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The Sociology of Health, Illness, and Health Care

A Critical Approach

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The Sociology of Health, Illness, and Health Care

A Critical Approach

E I G H T H E D I T I O N

ROSE WEITZ Arizona State University

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Printed in the United States of America Print Number: 01 Print Year: 2019

The Sociology of Health, Illness, and Health Care: A Critical Approach, Eighth Edition Rose Weitz

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In memory of my mother, Lilly Weitz, with love

Brief Contents

PA RT I Social Factors and Illness 1 Chapter 1 The Sociology of Health, Illness, and Health Care 3

Chapter 2 The Social Sources of Modern Illness 18

Chapter 3 The Social Distribution of Illness in the United States 46

Chapter 4 Illness and Death in the Less Developed Nations 69

PA RT II The Meaning and Experience of Illness 93 Chapter 5 The Social Meanings of Illness 95

Chapter 6 The Experience of Disability, Chronic Pain, and Chronic Illness 116

Chapter 7 The Sociology of Mental Illness 139

PA RT III Health Care Systems, Settings, and Technologies 169 Chapter 8 Health Care in the United States 170

Chapter 9 Health Care Around the Globe 195

Chapter 10 Health Care Settings and Technologies 221

PA RT IV Health Care, Health Research, and Bioethics 247 Chapter 11 The Profession of Medicine 248

Chapter 12 Other Mainstream and Alternative Health Care Providers 276

Chapter 13 Issues in Bioethics 303

GLOSSARY 325

REFERENCES 340

INDEX 381

vii

Contents

PREFACE xvi

ABOUT THE AUTHOR xxvi

PA RT I Social Factors and Illness 1

Chapter 1 The Sociology of Health, Illness, and Health Care 3

The Sociology of Health, Illness, and Health Care: An Overview 5

The Sociological Perspective 6

A Critical Approach 8

A Brief History of Disease 10

The European Background 10

Disease in the New World 11

The Epidemiological Transition 11

Understanding Research Sources 13

Evaluating Research Sources 13

Evaluating Research Data 14

Summary 15

Review Questions 16

Critical Thinking Questions 17

Chapter 2 The Social Sources of Modern Illness 18

An Introduction to Epidemiology 20

The Modern Disease Profile 22

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The New Rise in Infectious Disease 22

Today’s Top Killers 23

The Social Sources of Premature Deaths 24

Diet, Exercise, and Obesity 25

Tobacco 27

Medical Errors 28

Alcohol 29

Bacteria and Viruses 30

Toxic Agents and Risk Societies 31

Firearms 32

Motor Vehicles 32

Sexual Behavior 33

Illicit Drug Use 34

The Health Belief Model, Health Lifestyles, and Health “Projects” 37

The Health Belief Model 37

Health Lifestyles 37

Health Projects 40

Social Stress and Social Networks 40

Social Stress 40

Gender, Race, Class, and Social Stress 42

Social Networks 42

Implications 43

Summary 43

Review Questions 44

Critical Thinking Questions 45

Chapter 3 The Social Distribution of Illness in the United States 46

Social Class 48

Overview 48

The Sources of Class Differences in Health 49

Race and Ethnicity 52

African Americans 53

Hispanic Americans 56

Native Americans 57

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Asian Americans 57

Case Study: Environmental Racism 59

Age 59

Overview 59

Sex and Gender 60

Overview 60

Case Study: Intimate Partner Violence and Health 62

Transgender Health Issues 63

Intersex Health Issues 64

Social Capital 65

Implications 66

Summary 66

Review Questions 67

Critical Thinking Questions 68

Chapter 4 Illness and Death in the Less Developed Nations 69

Setting the Stage: Key Concepts 71

Understanding Development Patterns 71

Understanding Globalization 73

Understanding Global Health 73

Explaining Death and Disease in Less Developed Nations 74

Chronic Disease 74

Poverty, Malnutrition, and Disease 75

Infectious and Parasitic Diseases 77

Neglected Tropical Diseases 81

Infant Mortality 82

Maternal Mortality 83

Respiratory Diseases 86

War 87

Disasters 87

Structural Violence 88

Implications 89

Summary 90

Review Questions 91

Critical Thinking Questions 91

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PA RT II The Meaning and Experience of Illness 93

Chapter 5 The Social Meanings of Illness 95

Explaining Illness Across History 97

Models of Illness 98

The Medical and Sociological Models of Illness 98

Medicine as Social Control 102

Creating Illness: Medicalization 103

Genetic Research and Social Control 108

Social Control and the Sick Role 110

Implications 113

Summary 113

Review Questions 115

Critical Thinking Questions 115

Chapter 6 The Experience of Disability, Chronic Pain, and Chronic Illness 116

Understanding Disability 118

Defining Disability 118

People with Disabilities as a Minority Group 119

The Social Distribution of Disability 120

Understanding Chronic Pain 122

Living with Chronic Pain 122

Gender, Ethnicity, Class, and Chronic Pain 123

Living with Disability and Chronic Illness 123

Responding to Initial Symptoms 123

Managing Health Care and Treatment Regimens 126

Managing Social Relationships and Social Standing 131

Implications 135

Summary 136

Review Questions 137

Critical Thinking Questions 138

Chapter 7 The Sociology of Mental Illness 139

The Epidemiology of Mental Illness 141

The Extent of Mental Illness 141

Social Stress and Mental Illness 142

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Ethnicity, Gender, Social Class, and Rates of Mental Illness 142

Social Capital and Mental Illness 144

Defining Mental Illness 145

The Medical Model of Mental Illness 145

The Sociological Model of Mental Illness 146

The Problem of Diagnosis 148

The Politics of Diagnosis 149

A History of Treatment 150

Before the Scientific Era 150

The Rise and Decline of Moral Treatment 151

Freud and Psychoanalysis 153

The Antipsychiatry Critique 154

Deinstitutionalization 155

The Rise of Managed Care 157

The Remedicalization of Mental Illness 158

Mental Health and the Affordable Care Act 160

Recent Challenges to Medical Diagnoses and Treatment 160

The Experience of Mental Illness 161

Becoming a Mental Patient 161

Mental Illness and Identity 164

Implications 164

Summary 165

Review Questions 166

Critical Thinking Questions 167

PA RT III Health Care Systems, Settings, and Technologies 169

Chapter 8 Health Care in the United States 170

A History of U.S. Health Insurance 172

The Birth of U.S. Health Insurance 172

The Government Steps In 173

The Rise of Commercial Insurance 174

The Rise (and Partial Fall) of Managed Care 174

The Attempt at “Health Care Security” 175

The 2010 Patient Protection and Affordable Care Act 176

Passing the Affordable Care Act 176

Understanding the Affordable Care Act 176

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The ACA Under Attack 177

The Impact of the ACA 178

The Continuing Crisis in Health Care Costs 178

The Myths of Health Care Costs 178

Understanding Health Care Costs 180

Health Care Costs and the ACA 183

Health Care Costs and “Big Pharma” 183

The Continuing Crisis in Health Care Access 188

Uninsured Americans 188

Underinsured Americans 189

The Consequences of Underinsurance and Lack of Insurance 189

The Prospects for State-Level Reform 190

Implications 191

Summary 192

Review Questions 193

Critical Thinking Questions 194

Chapter 9 Health Care Around the Globe 195

Evaluating Health Care Systems 197

Universal Coverage 197

Portability 198

Geographic Accessibility 199

Comprehensive Benefits 200

Affordability 200

Financial Efficiency 201

Consumer Choice 201

Health Care in Other Countries 201

Germany: Social Insurance for Health Care 203

Canada: National Health Insurance 205

Great Britain: National Health Service 207

China: Promises and Perils 210

Mexico: Moving toward Equitable Health Care 213

Democratic Republic of Congo: When Health Care Collapses 216

Implications 217

Summary 218

Review Questions 219

Critical Thinking Questions 220

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Chapter 10 Health Care Settings and Technologies 221

The Hospital 223

The Premodern Hospital 223

Beginnings of the Modern Hospital 224

The Rise of the Modern Hospital 225

Hospitals Today 225

The Hospital–Patient Experience 226

The Shift Away from Hospitals 227

Nursing Homes 227

Gender, Age, Ethnicity, Class, and Nursing Home Usage 227

Financing Nursing Home Care 228

Working in Nursing Homes 229

Life in Nursing Homes 229

Hospices 231

Origins of Hospice 231

Modern Hospices 231

Use of Hospice 233

Outcomes of Hospice Care 234

Home Care 234

The Nature of Family Caregiving 235

Easing the Burdens of Caregiving 236

Health Care Technologies 237

The Nature of Technology 237

The Social Construction of Technology 239

The Technological Imperative 240

Technology and the Changing Nature of Health Care 241

Implications 242

Summary 243

Review Questions 245

Critical Thinking Questions 245

PA RT IV Health Care, Health Research, and Bioethics 247

Chapter 11 The Profession of Medicine 248

American Medicine in the Nineteenth Century 250

The Rise of Medical Dominance 253

The Flexner Report and Its Aftermath 253

Doctors and Professional Dominance 254

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The Threats to Medical Dominance 255

The Rise of Corporatization 255

The Rise of Government Control 256

The Decline in Public Support 258

The Decline of the American Medical Association and Countervailing Powers 258

The Continued Strength of Medical Dominance 259

Medical Education and Medical Values 261

The Structure of Medical Education 261

Ethnicity, Sex, Class, and Medical Education 262

Learning Medical Values 263

The Consequences of Medical Values 267

Patient–Doctor Relationships 268

Power and Paternalism 269

Ethnicity, Class, Gender, and Paternalism 269

Paternalism as Process 270

Shifting Patient Roles and the Decline of Paternalism 271

Reforming Medical Training 271

Implications 272

Summary 273

Review Questions 274

Critical Thinking Questions 275

Chapter 12 Other Mainstream and Alternative Health Care Providers 276

Mainstream Health Care Providers 278

Nursing: The Struggle for Professional Status 278

Osteopathy: A Parallel Profession 284

Dentistry: Maintaining Independence 288

Alternative Health Care Providers 289

Chiropractors: From Marginal to Limited Practitioners 290

Direct-Entry Midwives: Limited but Still Marginal 292

Curanderos 296

Acupuncturists 298

Implications 299

Summary 300

Review Questions 301

Critical Thinking Questions 302

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Chapter 13 Issues in Bioethics 303

History of Bioethics 305

The Nazi Doctors and the Nuremberg Code 306

The Rise of Bioethics 308

Contemporary Issues in Bioethics 311

Reproductive Technology 311

Enhancing Human Traits 312

Resource Allocation and the Right to Refuse to Treat 313

CRISPR Technologies 314

Athletes and Concussions 314

Institutionalizing Bioethics 316

Hospital Ethics Committees 316

Institutional Review Boards 316

Professional Ethics Committees 317

Community Advisory Boards 317

The Impact of Bioethics 317

The Impact on Research 318

The Impact on Medical Education 320

The Impact on Clinical Practice 321

Implications 322

Summary 323

Review Questions 324

Critical Thinking Questions 324

GLOSSARY 325

REFERENCES 340

INDEX 381

xvi

Preface

The sociology of health, illness, and health care has changed dramatically over the past few decades. The field was started primarily by sociologists who worked closely with doctors, taking doctors’ assumptions about health and health care for granted and primarily asking questions that doctors deemed important. By the 1970s, how- ever, the field had begun shifting toward a decidedly different set of questions. Some of these new questions challenged doctors’ assumptions, whereas others focused on issues that lay outside most doctors’ areas of interest or expertise such as how poverty affects health or how individuals develop meaningful lives despite chronic illness.

I entered graduate school during this shift, drawn by the opportunity to study how health and illness are socially created and defined and how gender, ethnicity, social class, and power affect both the health care system and individual experi- ences of health and illness. As a result, over the years I have researched such topics as how medical values affect doctors’ use of genetic testing, how midwives and doctors have battled for control over childbirth, and how social ideas about AIDS affect the lives of those who live with this disease.

Although I had no trouble incorporating this new vision of the sociology of health, illness, and health care into my research, I consistently found myself frus- trated by the lack of a textbook that would help me incorporate it into my teach- ing. Instead, most textbooks still seemed to reflect older ideas about the field and to take for granted medical definitions of the situation. Most basically, the books assumed that doctors define illness according to objective biological criteria, so they failed to question whether political and social forces underlie the process of defining illnesses. Similarly, most textbooks ignored existing power relationships rather than investigating the sources, nature, and health consequences of those relationships. For example, the textbooks gave relatively little attention to how doctors gained control over health care or how the power of the more developed nations has affected health in less developed nations. As a result, these textbooks used sociology primarily to answer questions posed by those working in the health

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care field, such as what social factors lead to heart disease and why patients might ignore their doctors’ orders. Consequently, these textbooks often seemed to offer a surprisingly unsociological perspective with their coverage of some topics differ- ing little from coverage of those topics in health education textbooks.

Because the textbooks available when I first began working on this book often avoided critical questions about health, illness, and health care, they seemed unlikely to encourage students to engage with the materials and to question either the presented materials or their own assumptions such as the belief that the United States has the world’s best health care system, that medical advances explain the modern rise in life expectancy, or that all Americans receive the same quality of health care regardless of their ethnicity, gender, or social class. Instead, the text- books primarily gave students already-processed information to memorize.

My purpose in writing this textbook was to fill these gaps by presenting a critical approach to the sociology of health, illness, and health care. This did not mean presenting research findings in a biased fashion or presenting only research that supported my preexisting assumptions, but it did mean using critical skills to interpret the available research and to pull it together into a coherent “story” in each chapter. In addition, I hoped to tell these stories in a manner that would en- gage students—whether in sociology classes, medical schools, or nursing schools— and encourage them to learn actively and think independently. These remain the primary goals of this eighth edition. Both of these goals led me to decide against trying to please all sides or cover all topics because I believe such a strategy leads to a grab-bag approach that makes textbooks hard to follow and to an intellectual homogenization that makes them seem lifeless.

THE CRITICAL APPROACH

The critical approach, as I have defined it, means using the “sociological imag- ination” to question taken-for-granted aspects of social life. For example, most of the available textbooks in the sociology of health, illness, and health care still view patients who do not comply with prescribed medical regimens essentially through doctors’ eyes, starting from the assumption that patients should comply. More broadly, previous textbooks have highlighted the concept of a sick role—a concept that embodies medical and social assumptions regarding “proper” illnesses and “proper” patients and downplays all aspects of individuals’ lives other than the time they spend as patients.

In contrast, I emphasize recent research that questions such assumptions. For example, I discuss patient compliance by examining how patients view medi- cal regimens and compliance, why doctors sometimes have promoted medical treatments (such as hormone therapy for menopausal women) that later proved dangerous and how doctors’ tendency to cut short patients’ questions can foster patient noncompliance. Similarly, this textbook explains the concept of a sick role but pays more attention to the broader experience of illness—a topic that has gen- erated far more sociological research than the sick role has over the past 20 years.

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CHAPTER ORGANIZATION

This textbook demonstrates the breadth of topics included in the sociology of health, illness, and health care. Part I discusses the role that social factors play in fostering illness and in determining which social groups experience which ill- nesses. Chapter 1 offers an introduction to the field, the sociological approach, and the history of disease. Chapter 2 describes the major causes of preventable deaths in the United States, demonstrating how social as well as biological factors affect health and illness. Building on this basis, Chapter 3 describes how age, sex, gender, social class, race, and ethnicity affect the likelihood, nature, and consequences of illness in the United States. Finally, Chapter 4 explores the nature and sources of illness in the poorer countries of Asia, Africa, and Latin America.

Part II analyzes the meaning and experience of illness and disability in the United States. Chapter 5 explores the social meanings of illness and social ex- planations for illness as well as the social consequences of defining behaviors and conditions as illnesses. With this as a basis, Chapter 6 first explores the meaning of disability and then offers a sociological overview of the experience of living with chronic pain, chronic illness, or disability, including the experience of seeking care from both medical doctors and alternative health care providers. Finally, Chapter 7 provides a parallel assessment of mental illness.

Part III moves the analysis to the macro level. Chapter 8 describes the U.S. health care system, the battles surrounding the 2010 Patient Protection and Affordable Care Act, and the continuing crises in health care costs and accessibil- ity. Chapter 9 offers some basic measures for evaluating health care systems and then uses these measures to evaluate the systems found in Canada, Great Britain, Germany, the People’s Republic of China, Mexico, and the Democratic Republic of Congo. Finally, Chapter 10 examines four common health care settings— hospitals, hospices, nursing homes, and family homes—and provides a social analysis of the technologies used in those settings.

Part IV shifts the focus from the health care system to health care providers. Chapter 11 analyzes the nature and source of doctors’ professional status as well as the threats to that status. The chapter also describes the process of becoming a doctor, the values embedded in medical culture, and the impact of those values on doctor–patient relationships. Chapter 12 describes the history and social position of various health care occupations, including dentistry, nursing, osteopathy, and acupuncture. Finally, Chapter 13 presents a sociological overview of bioethics.

COVERAGE

Although I have tried in this book to present a coherent critical view, I have not sacrificed coverage of topics that professors have come to expect. Consequently, this book covers essentially all the topics that have become standard over the years, including doctor–patient relationships, the nature of the U.S. health care system,

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and the social distribution of illness. In addition, I include several topics that until recently received relatively little coverage in other textbooks in the field, includ- ing bioethics, mental illness, the medical value system, the experience of illness and disability, and the social sources of illness in both more and less developed nations. As a result, this text includes more materials than most teachers can cover effectively in a semester. To assist those who choose to skip some chapters, each important term is printed in bold the first time it appears in each chapter, alerting students that they can find a definition in the book’s Glossary. (Each term is both printed in bold and defined the first time it appears in the book.)

In addition, reflecting my belief that sociology neither can nor should exist in isolation but must be informed by and in turn inform other related fields, several chapters begin with historical overviews. For example, the chapter on health care institutions discusses the political and social forces that led to the development of the modern hospital, and the chapter on medicine as a profession discusses how and why the status of medicine grew so dramatically after 1850. These discussions provide a context to help students better understand the current situation.

CHANGES IN THE EIGHTH EDITION

Throughout the textbook, I have worked to update statistics as well as reviews of topical issues and theoretical issues. Two-thirds of references in this new edition are from the last 10 years, and fewer than 10% are from books or articles written be- fore 1990—a level of timeliness that significantly surpasses that of most textbooks. The reader can thus safely assume that, wherever possible, the statistics, policy summaries, and legal information are the latest available.

New and Updated Chapter Topics

Chapter 2 ■ E-cigarettes ■ Distracted driving and rise in automobile fatalities and distracted driving ■ The opioid epidemic ■ Updated discussion of premature causes of death

Chapter 3 ■ Climate change, poverty, and ill health ■ Transgender health ■ Mass incarceration and health

Chapter 4 ■ Neglected tropical disease ■ Zika virus

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Chapter 7 ■ Recent challenges to psychiatric diagnosis ■ Mental health and the Affordable Care Act

Chapter 8 ■ The impact of the ACA ■ The ACA under attack

Chapter 9 ■ Updated statistics and descriptions of health care in five nations

Chapter 10 ■ Technology, terrorism and public health ■ Updated statistics on hospice care, hospitals, nursing homes, and home care

Chapter 11 ■ “Boutique medicine”

Chapter 12 ■ Updated statistics on each health care occupation

Chapter 13 ■ CRISPR technologies

New or Revised Tables and Figures ■ Map 2.1 Overdose Deaths Per 100,000 Persons, United States ■ Table 2.1 Main Causes of Deaths, 1900 and 2016 ■ Table 2.2 Underlying Causes of Premature Death in the United States, 2010 ■ Figure 3.1 Life Expectancy by Race and Ethnicity and Sex ■ Table 3.1 Infant Mortality Rates in Different Nations and U.S. Ethnic Groups ■ Table 3.2 Top Causes of Death by Ethnicity ■ Table 4.1 Life Expectancy and Infant Mortality by Development Level ■ Table 4.2 Leading Causes of Death around the World ■ Table 6.1 Percentage of Americans with Basic Activity Limitations ■ Table 7.1 Sex, Ethnicity, and Social Class Groups with the Highest Lifetime

Risks of Specific Mental Illnesses ■ Figure 7.1 Antidepressant Use in the Past 30 Days, United States ■ Figure 8.1 Health Expenses and Inpatient Days in Acute Care Hospitals in

30 Nations ■ Figure 8.2 Health Expenses and Number of Doctor Visits in 30 Nations ■ Figure 8.3 Health Expenses and Life Expectancy in 30 Nations ■ Table 9.1 Characteristics of Health Care Systems in Seven Countries ■ Figure 11.1 Median Salaries by Percentage Women in Specialty

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PEDAGOGICAL FEATURES FOR STUDENTS

Learning Objectives

Each chapter opens with a list of learning objectives matched to the chapter’s main sections. These objectives help students focus their studying by alerting them to the chapter’s main themes. The objectives also can help students demonstrate their ability to apply what they have learned and can help both students and faculty assess students’ understanding.

Chapter Openings

Unfortunately, many students take courses only to fill a requirement. As a result, the first problem professors face is interesting students in the topic. For this reason, the main text of each chapter begins with a vignette taken from a sociological or literary source that is chosen to spark students’ interest by demonstrating that the topic has real consequences for real people—that, for example, stigma is not simply an abstract concept but something that can cost ill persons their friends, jobs, and social standing.

Chapter “Road Maps”

To help orient students to the chapters, each chapter’s introductory section ends with a brief overview of what is to come.

Contemporary Issues

To further raise student interest and add to their knowledge, most chapters include a boxed discussion of a relevant topic taken from recent news reports. Topics in- clude the debate over full-body computed tomography scans and the decline of primary care. These boxes should spark student interest while helping them make connections between textbook topics and the world around them.

Ethical Debates

To teach students that ethical dilemmas pervade health care, most chapters include a discussion of a relevant ethical debate. The debates are complex enough that stu- dents must use critical thinking skills to assess them; teachers can use these debates for classroom discussions, group exercises, or written assignments.

Key Concepts

To help students understand particularly important and complex topics, such as the difference between the sociological and medical models of illness or the strengths and weaknesses of the sick role model, I have included Key Concepts tables or boxes in several chapters.

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Implications Essays

Each chapter ends with a brief essay that discusses the implications of the chapter and points the reader toward new questions and issues. These essays should stimu- late critical thinking and can serve as the basis for class discussions.

Chapter Summaries

Each chapter ends with a detailed, bulleted summary that will help students to review the material and identify key points.

Review Questions and Critical Thinking Questions

Each chapter includes both Review Questions that take students through the main points of the chapter and Critical Thinking Questions that push students to extrapolate from the chapter to other issues or to think more deeply about issues discussed within the chapter.

Glossary

The book includes an extensive Glossary that defines all important terms used in the book. Each Glossary term is printed in bold and defined the first time it appears in the text. In addition, each term is also printed in bold the first time it appears in each chapter, so students will know that they can find a definition in the Glossary.

SUPPLEMENTAL AND PEDAGOGICAL FEATURES FOR FACULTY

Instructor’s Manual with Test Bank

For each chapter, the Instructor’s Manual contains a detailed summary, a set of multiple-choice questions, and a list of relevant books, narrative films, and docu- mentaries. In addition, the Instructor’s Manual includes several questions for each chapter that require critical-thinking skills to answer and that teachers can use for essay exams, written assignments, in-class discussions, or group projects. The manual also includes for each chapter a set of Internet exercises designed both to familiarize students with materials available on the Web and to facilitate critical reading and use of those materials. Finally, the manual lists for each chapter a few relevant nonprofit organizations. Organizations listed in the manual can serve as sources for more information or as sites for out-of-class assignments.

The Test Bank contains up to 20 multiple-choice questions, five true/false questions, and five essay questions per chapter, all fully updated according to match the eighth edition’s content.

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To guarantee the quality of the Instructor’s Manual with Test Bank, I wrote ev- erything in it rather than relying on student assistants. The manual is available for downloading at http://login.cengage.com.

PowerPoint Lectures

PowerPoint lectures for each chapter, including all tables and figures, can be down- loaded from http://login.cengage.com. These lectures should prove useful both for new adopters and for past users who would like to incorporate more visual materials into their classrooms. As with the Instructor’s Manual, I put these lectures together myself to ensure their quality.

Critical Thinking

In this textbook, I have aimed not only to present a large body of data in a coher- ent fashion but also to create an intellectually rigorous textbook that will stimulate students to think critically. I have tried to keep this purpose in mind in writing each chapter. Debates discussed within the chapters, as well as the various chapter features, all encourage students to use critical thinking, and all serve as resources that teachers can use in building their class sessions.

ACKNOWLEDGMENTS

In writing this textbook, I have benefited enormously from the generous assis- tance of my colleagues. I am fortunate to have had several exceptional scholars as colleagues over the years—Victor Agadjanian, Jill Fisher, Verna Keith, Bradford Kirkman-Liff, Jennie Jacobs Kronenfeld, and Deborah Sullivan—who shared my interest in health issues and helped me improve various chapters. I am also excep- tionally fortunate to have had the assistance of several research assistants—Natasha McLain, Allex Raines, Ashley Fenzl, Allison Hickey, Ann Jensby, Melinda Konicke, Christopher Lisowski, Stephanie Mayer, Leslie Padrnos, Zina Schwartz, Diane Sicotte, Lisa Tichavsky, Caroleena Von Trapp, and especially Karl Bryant, Lisa Comer, and Amy Weinberg, who worked on the first edition.

Because, of necessity, this textbook covers a wealth of topics that range far beyond my own areas of expertise, I have had to rely heavily on the kindness of strangers in writing it. One of the most rewarding aspects of writing this book has been the pleasure of receiving information, ideas, critiques, and references from individuals I did not previously know. This edition was undoubtedly improved by suggestions from Ellen Annandale (University of York), Maria Dolores Corona (Universidad Autónoma de Nuevo León), Georgiann Davis (University of Nevada, Las Vegas), Victoria Fan (University of Hawai`i at Mānoa), Siegfried Geyer (Hannover Medical School), Lei Jin (Chinese University of Hong Kong), Tey Meadow (Harvard University), Melissa A. Milkie (University of Toronto), Jiong Tu (Sun Yat-sen University), Carla A. Pfeffer (University of

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South Carolina), Helen Rosenberg (University of Wisconsin-Parkside), Ian Shaw (University of Nottingham), Lisa Strohschein (University of Alberta), and Diane Kholos Wysocki (formerly of University of Nebraska–Kearney).

In addition, I would like to once again thank those who gave me the ben- efit of their expert advice on previous editions: Astrid Eich-Krohm (Uni- versity Hospital Magdeburg), Krista Hodges (University of Hawaii), Michael Polgar (Penn State University), Jennifer Schumann, Ian Shaw (University of Nottingham), Julia Stumkat, and Wei Zhang (University of Hawaii), Emily Abel (University of California–Los Angeles); James Akré (World Health Organization); Ellen Annandale (University of Leicester); Ofra Anson (Ben Gurion University of the Negev); Judy Aulette (University of North Carolina; Charlotte); Miriam Axelrod; James Bachman (Valparaiso University); Kristin Barker (University of New Mexico); Paul Basch (Stanford University); Phil Brown (Brown Univer- sity); Peter Conrad (Brandeis University); Timothy Diamond (California State University–Los Angeles); Luis Durán (Mexican Institute of Social Security); Elizabeth Ettorre (University of Liverpool); Michael Farrall (Creighton Uni- versity); Kitty Felker; Arthur Frank (University of Alberta); María Hilda García- Pérez (Arizona State University); Alya Guseva (Boston University); Frederic W. Hafferty (University of Minnesota–Duluth); Harlan Hahn (University of Southern California); Ida Hellander (Physicians for a National Health Program); Paul Higgins (University of South Carolina); Allan Horwitz (Rutgers University); David J. Hunter (University of Durham); Joseph Inungu (Central Michigan University); Michael Johnston (University of California–Los Angeles); Stephen J. Kunitz (University of Rochester); Donald W. Light (University of Medicine and Dentistry of New Jersey); Judith Lorber (City University of New York); William Magee (University of Toronto); Judy Mayo; Peggy McDonough (Uni- versity of Toronto); Jack Meyer (Economic & Social Research Institute); Cindy Miller; Jeanine Mount (University of Wisconsin); Marilynn M. Rosenthal (Univer- sity of Michigan); Beth Rushing (Kent State University); C. J. Schumaker (Walden University); Wendy Simonds (Georgia State University); Teresa Scheid (University of North Carolina at Charlotte); Clemencia Vargas (Centers for Disease Con- trol and Prevention); Olaf von dem Knesebeck (University of Hamburg); Robert Weaver and his students, especially Cheryl Kratzer (Youngstown State University); Daniel Whitaker; David R. Williams (University of Michigan); Irving Kenneth Zola (Brandeis University); and Robert Zussman (University of Massachusetts– Amherst). This book undoubtedly would have been better if I had paid closer attention to their comments. I apologize sincerely if I have left anyone off this list.

Similarly, I am deeply grateful for the advice received from reviewers of this edition: Andrew Bedrous (Kansas Wesleyan University), DeAnna Gore (Univer- sity of South Carolina, Aiken), Muhammad Haque (McNeese State University), Caroline Hartnett (University of South Carolina), Marta Jankowska (San Diego State University), Yushi Li (Northern Kentucky University), Elgin Mannion (Western Illinois University), Jewrell Rivers (Abraham Baldwin Agricultural College), Sharon Sassler (Cornell University), and Paul Sutton (University of Denver).

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I also remain grateful for the suggestions from reviewers on previous edi- tions: Jennifer Bulanda (Miami University), Benjamin Drury (Indiana Univer- sity at Columbus), Jamie Gusrang (Community College of Philadelphia), David Mullins (University of Saint Francis), Claire Norris (Xavier University of Louisiana), Michael Polgar (Penn State University), Richard Scotch (University of Texas at Dallas), Nicole Vadino (Community College of Philadelphia, Thomas Allen (Uni- versity of South Dakota), Karen Bettez (Boston College), Linda Liska Belgrave (University of Miami), Pamela Cooper-Porter (Santa Monica College), Karen Frederick (St. Anselm College), Stephen Glazier (University of Nebraska), Linda Grant (University of Georgia), Janet Hankin (Wayne State University), Heather Hartley (Portland State University), Alan Henderson (California State University– Long Beach), Simona Hill (Susquehanna University), Frances Hoffman (Uni- versity of Missouri), Joseph Kotarba (University of Houston), Lilly M. Langer (Florida International University), Christine Malcom (Roosevelt University), Keith Mann (Cardinal Stritch University), Phylis Martinelli (St. Mary’s College of California), Dan Morgan (Hawaii Pacific University), Larry R. Ridener (Pfeiffer University), Susan Smith (Walla Walla University), Kathy Stolley (Virginia Wesleyan College), Deborah Sullivan (Arizona State University), Gary Tiedman (Oregon State University), Diana Torrez (University of North Texas), Linda Treiber (Kennesaw State University), Robert Weaver (Youngstown State University), and Diane Zablotsky (University of North Carolina–Charlotte).

Finally, I would like to express my appreciation to the current and former Cengage staff who made the process of revising this book for its eighth edition as smooth as possible: Sharib Asrar, Mike Bailey, Julie Dierig, Deanna Ettinger, Ava Fruin, Jayne Stein, Wendy Huska, and Jenny Ziegler.

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About the Author

Rose Weitz received her doctoral degree in sociology from Yale University in 1978. Since then, she has carved an exceptional record as both a scholar and a teacher. She is the author of numerous scholarly articles, the book Life with AIDS, and the book Rapunzel’s Daughters: What Women’s Hair Tells Us About Women’s Lives. She also is coauthor of Labor Pains: Modern Midwives and Home Birth and coeditor of The Politics of Women’s Bodies: Appearance, Sexuality, and Behavior.

Professor Weitz has won several teaching awards (including the Pacific So- ciological Association’s Distinguished Contributions to Teaching Award, the ASU Last Lecture Award, and the ASU College of Liberal Arts and Sciences Outstand- ing Teaching Award) and has served as director of ASU’s graduate and under- graduate sociology and gender studies programs. In addition, she has served as president of Sociologists for Women in Society, as chair of the Sociologists AIDS Network, and as chair of the Medical Sociology Section of the American Socio- logical Association.

PA RT

Social Factors and Illness

Chapter 1 The Sociology of Health, Illness, and Health Care

Chapter 2 The Social Sources of Modern Illness

Chapter 3 The Social Distribution of Illness in the United States

Chapter 4 Illness and Death in the Less Developed Nations

Illness is a fact of life. Everyone experiences illness sooner or later, and everyone eventually must cope with illness among close friends and relatives.

To the ill individual, illness can seem a purely internal and personal experi- ence. But illness is also a social phenomenon with social roots and social conse- quences. In this first part, we look at the role that social factors play in fostering illness within societies and in determining which groups in a given society will experience which illnesses with which consequences.

Chapter 1 introduces the sociological perspective and illustrates how sociol- ogy can help us understand issues related to health, illness, and health care. The chapter also provides a brief history of disease in the Western world, which high- lights how social factors can foster disease. In the subsequent chapters, we explore the role social forces play in causing disease and in determining who gets ill in the modern world. In Chapter 2, we review the basic concepts needed to discuss diseases and look at modern patterns of disease. After that, we look at the social sources of illness in the contemporary United States and at some social factors that help predict individual health and illness. In Chapter 3, we investigate how four social factors—age, sex and gender, social class, and race or ethnicity—affect the

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distribution of illness in the United States and explore why some social groups bear a greater burden of illness than others. Finally, in Chapter 4, we analyze the very different pattern of illnesses found in poorer countries and explain how social forces—from the low status of women to the rise of migrant labor—can foster illness in these countries.

C H A P T E R

The Sociology of Health,

Illness, and Health Care

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ag es

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LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Describe the sociological perspective. ● Identify the difference between sociology in medicine and sociology

of medicine. ● Understand how social changes have historically affected the health

of populations. ● Evaluate research methods and sources.

Shortly before her 46th birthday, my friend Lara found a lump in her breast. A mammogram (a type of x-ray) soon identified the lump as potentially cancerous, and so a surgeon removed part of the lump for further testing. A few days later, Lara learned that she did indeed have breast cancer. That week, she got her affairs in order and signed a “living will,” specifying the circumstances in which she would want all treatment stopped, and a “medical power of attorney” giving me legal authority to make medical decisions for her if she could not do so herself. These two documents, she hoped, would protect her from aggressive medical treatments that might prolong her suffering without improving her quality of life or chances of survival.

Two weeks after the initial tests, her surgeon removed the rest of the lump as well as the lymph nodes under her arm (where breast cancer most often spreads). The surgery went well, but the subsequent laboratory tests showed that the cancer had spread to her nodes.

Yet in many ways, Lara was fortunate. Her breast cancer was detected at an early stage, improving her odds of surviving. Although she had neither husband nor children to turn to, her friends proved uniformly supportive. She received health insurance through her employer and had no fears of losing either her job or her insurance.

Nevertheless, cancer changed Lara’s life irrevocably, making it, at times, a nightmare. Having breast cancer shook Lara’s faith in her body and changed her sense of her physical self. At the same time, her illness threatened her relationships with others. Despite the supportive responses she received from friends and coworkers, she feared that they would drift away as her illness continued or that she would chase them away with her all-too-reasonable complaints, worries, and needs.

Meanwhile, even though she had better health insurance than many Americans have, her debts for items not covered by insurance mounted. In addition, she had to spend hours fighting her insurance company to obtain relaxation training and expensive but effective anti-nausea drugs to cope with chemotherapy’s side effects. Without the drugs, chemotherapy made her so

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ill that she could barely function, let alone fight her insurance company. In addition, chemotherapy proved so toxic that it damaged her veins with each painful intravenous treatment. As a result, her doctors suggested inserting a semi-permanent plastic tube into her chest wall so they could instead administer the chemotherapy through the tube. Although doing so would have reduced her pain, Lara rejected the suggestion because she felt that, with this sign of her illness physically attached to her body, cancer would become part of her very self rather than merely one aspect of her life.

After a year of surgery, chemotherapy, and radiation, Lara’s physical traumas ended, although it took another year before she regained her former energy.

Lara’s story demonstrates the diverse ways that illness affects individuals’ lives, as well as the diverse range of topics that sociologists of health, illness, and health care can study. This chapter opens with an overview of those topics, the sociolog- ical perspective, and the critical approach within sociology. We then look briefly at the history of disease, which helps put sociological research on health into con- text, before exploring the research sources used by sociologists.

THE SOCIOLOGY OF HEALTH, ILLNESS, AND HEALTH CARE: AN OVERVIEW

Sociologists’ research into health, illness, and health care falls into three main cat- egories. First, some sociologists study how social forces promote health and illness and why some social groups suffer more illness than others. For example, research- ers have explored whether working conditions in U.S. factories help explain why poorer Americans get certain cancers more often than wealthier Americans. Simi- larly, sociologists can study how historical changes in social life can explain changes in patterns of illness. To understand why rates of breast cancer have increased, for example, researchers have studied the possible impact of environmental pollution, increased meat consumption, and women’s changing work lives.

Second, instead of studying broad patterns of illness, sociologists can study the experiences of people like Lara who live with illness each day—exploring, for exam- ple, how illness affects individuals’ sense of identity, relationships with family, or ideas about what causes illness. Similarly, sociologists can study the experiences of health care providers. Some sociologists have analyzed how doctors’ status and power have shifted over time, and others have investigated how power affects interactions among doctors, nurses, and other health care workers. Still others have examined interactions between health care workers and patients, asking, for example, how doctors maintain control over patients or whether doctors treat male and female patients differently.

Third, sociologists can analyze the health care system as a whole. Sociologists have examined how health care systems have developed, compared the strengths and weaknesses of different systems, and explored how systems can be improved.

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For example, some have studied how U.S. health insurance companies can make it difficult for people like Lara to get needed care, explored why European countries do better than the United States at providing health care to all who need it, and examined whether European health care policies could work in the United States.

The topics researched by sociologists of health, illness, and health care overlap in many ways with those studied by health psychologists, medical anthropologists, public health workers, and others. What most clearly differentiates sociologists from these other researchers is the sociological perspective. The next section describes that perspective.

THE SOCIOLOGICAL PERSPECTIVE

The sociological perspective is a view of the world that focuses on social patterns rather than individual behaviors. Whereas a psychologist might help a battered wife develop a greater sense of her own self-worth so she might eventually leave her abusive husband, a sociologist likely would consider therapy a useful but inefficient means of addressing the root causes of wife abuse. Most battered wives, after all, don’t have the time, money, or freedom to get help from psychologists. Moreover, even when therapy helps, it takes place only after the women have experienced physical and emotional damage. The sociologist would not deny that individual personalities play a role in wife battering but would find it more useful to explore whether social forces can explain why wife battering is much more common than husband battering or why battered wives so often remain with abusive husbands. Consequently, whereas the psychologist hopes to enable the individual battered wife eventually to leave her husband, the sociologist hopes to uncover the knowl- edge needed by legislators, social workers, activists, and others to prevent wife abuse in the first place.

As this example demonstrates, using the sociological perspective means framing problems as public issues rather than as simply personal troubles. According to C. Wright Mills (1959:8–9), the sociologist who first drew attention to this dichotomy:

[Personal] troubles occur within the character of the individual and within the range of his immediate relations with others; they have to do with his self and with those limited areas of social life of which he is directly and personally aware. Accordingly, the statements and the resolutions of troubles properly lie within the individual as a biographical entity and within the scope of his immediate milieu. … [In contrast, public] issues have to do with matters that transcend these local environments of the individual and the range of his inner life. They have to do with the organization of many such milieus into the institutions of an historical society as a whole.

For example, whenever a child is diagnosed with severe brain damage, it is a tragedy and personal trouble for the child’s family. If, on the other hand, several

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children in a neighborhood receive the same diagnosis during the same year, it could suggest a broader public issue such as a contaminated water system—as hap- pened in Flint, Michigan, in 2016. A sociologist would be likely to look for such a pattern and explore why, for example, polluting industries are more likely to build factories in poor, minority neighborhoods than in affluent, white neighborhoods. The sociological perspective, then, departs radically from the popular American belief that individuals create their own fates and that anyone can succeed if he or she tries hard enough.

The sociological perspective can help us identify critical research questions that might otherwise go unasked. For example, in the book Forgive and Remember: Managing Medical Failure, sociologist Charles Bosk (2003:62–63) described a situ- ation he observed one day on rounds, the time each day when recently graduated doctors (known as residents) and more senior doctors jointly examine the patients on a service or ward:

Dr. Arthur [the senior doctor] was examining the incision [surgical cut] of Mrs. Anders, a young woman who had just received her second mastectomy. After reassuring her that everything was fine, everyone left her room.

We walked a bit down the hall and Arthur exploded: “That wound looks like a walking piece of dogshit. We don’t close wounds with continuous suture on this service. We worked for hours giving this lady the best possible operation and then you screw it up on the closure. That’s not how we close wounds on this service, do you understand? These are the fine points that separate good surgeons from butchers, and that’s what you are here to learn. I never want to see another wound closed like that. Never!”

Arthur then was silent, he walked a few feet, and then he began speaking again: “I don’t give a shit how Dr. Henry [another senior doctor] does it on the Charlie Service or how Dr. Gray does it on Dogface: When you’re on my service, you’ll do it the way I want.”

Dr. Arthur and the residents he supervised undoubtedly viewed this situa- tion as a personal trouble requiring a personal solution—the residents seeking to appease Dr. Arthur, and Dr. Arthur seeking to intimidate and shame the residents into doing things the way he considered best. Similarly, depending on their view- point, most observers probably would view this as a story about either careless resi- dents or an autocratic senior doctor. Sociologists, however, would first ask whether residents and senior doctors typically interact like this. If they do, sociologists then would look for the social patterns underlying such interactions rather than focus on the personalities of these particular individuals. So, for example, based on his observations in this and other cases, Bosk discovered that cultural expectations within the medical world regarding authority, medical errors, and the importance of personal, surgical experience gave Dr. Arthur and the other supervising doctors power and allowed them to humiliate residents publicly and to set policies based more on personal preferences than on scientific data.

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Whereas Charles Bosk studied relations among doctors, sociologist Kristin Barker (2008) looked at interactions among individuals who believe they have fibromyalgia. Fibromyalgia is a relatively new disease label given to individuals who experience a wide variety of disabling symptoms. Because there are no bio- logical tests for fibromyalgia, many doctors doubt whether it should be considered a disease.

To explore what it means to live with fibromyalgia, Barker looked at posts to an online fibromyalgia support group. In a typical post, a woman named Sarah wrote:

My new doctor appointment was today. Was not good!! First of all she is four months out of medical school. She looked over my chart and immediately wanted to change all medications that I am taking. … [Then she said,] “Now about your fibromyalgia, I will not prescribe pain killers for fibro.” I sat there with my mouth open. She went on to tell me the fresh-out-of-med-school approach to fibro is exercise, diet. I said what about the pain? She proceeded to tell me the pain was “ALL IN MY HEAD, THERE IS NO PAIN, YOU JUST IMAGINE THERE IS.” My first thought was [to] jump up out of this chair and slap the B——!! Instead I said “You are an idiot”!! Then I walked out.

Depending on one’s perspective, Sarah’s post suggests either an ignorant and in- sensitive doctor or a rude patient with delusions of grandeur. To a sociologist, how- ever, this post raises several questions that go beyond these individuals and therefore requires looking at the surrounding culture and social structure. Barker, for example, explored how the online support group increased patients’ power to negotiate with their doctors, how the broader social structure nevertheless allowed doctors to control most interactions with patients, and how these struggles between doctors and patients reflected wider social questions regarding what constitutes an illness.

In sum, the sociological perspective shifts our focus from individuals to social groups and institutions. One effect of this shift is to highlight the role of power. Power refers to the ability to get others to do what one wants, whether willingly or unwillingly. Power is what allowed Dr. Arthur to treat his residents so rudely and what allowed Sarah to reject her doctor’s advice. Because sociologists study groups rather than individuals, the sociological analysis of power focuses on why some social groups have more power than others, how groups use their power, and the consequences of differential (that is, unequal) access to power rather than on how specific individuals get or use power. For example, sociologists have examined how doctors use their power in negotiations with hospitals over working conditions and how lack of power exposes poor persons to unhealthy living conditions.

A CRITICAL APPROACH

Although the concept of power underlies the sociological perspective, sociologists don’t necessarily emphasize power in their research and writing. For example, some sociologists have researched unhealthy eating patterns among poor people

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without exploring how a lack of power may force individuals to work two jobs and leave them without enough time to prepare healthy meals.

Those sociologists, on the other hand, who focus on the sources, nature, and consequences of power relationships can be said to use a critical approach. Critical sociologists recognize that, regardless of how power is measured, men typically have more power than do women, adults more power than children, whites more power than African Americans, heterosexuals more power than those who are not heterosexual, and so on. Critical sociologists who study health, illness, and health care have raised issues such as how differing levels of power affects individuals’ access to health care and healthy living conditions.

Critical sociologists also emphasize how social institutions and popular beliefs can reflect or reinforce the existing distribution of power. For example, many researchers who study the U.S. health care system have looked simply for ways to improve access to care within that system such as by providing subsidies to doctors who practice in low-income neighborhoods. Those who use a critical approach have asked instead whether we could provide better care to more people if we changed the basic structure of the system such as by removing the profit motive from health care to reduce the costs of care for everyone.

Similarly, critical sociologists have drawn attention to how doctors’ power enables them to shape our ideas about health, illness, and health care. Most basi- cally, these sociologists have questioned the very terms health, illness, and disability and have explored how these terms can reflect social values as well as physical characteristics.

In any sociological field, therefore, those who adopt a critical approach will ask quite different research questions than will others. Within the sociology of health, illness, and health care, this approach translates largely to whether so- ciologists limit their research to questions about social life that doctors consider useful—a strategy referred to as sociology in medicine—or design their research to answer questions of interest to sociologists in general—a strategy referred to as the sociology of medicine (Straus, 1957). Research using the latter strategy often challenges both medical views of the world and existing power relationships within health care.

To understand the difference between sociology in medicine and sociology of medicine, consider the sociological literature on patients who don’t follow their doctors’ advice. Reflecting doctors’ views of such patients as problematic, many sociologists (practicing sociology in medicine) have explored ways to encourage patients to comply with medical advice. In contrast, sociologists of medicine have looked at the issue of compliance through patients’ eyes. As a result, they have learned that patients sometimes ignore medical advice not out of foolishness but because their doctors did not clearly explain the prescribed regimens or because the emotional or financial costs of following that advice seem to outweigh the potential benefits. Similarly, whereas those practicing sociology in medicine have studied the experience of patienthood, those practicing sociology of medicine in- stead have studied the broader experience of illness, which includes but is not limited to the experience of patienthood. The growing emphasis on sociology of medicine and on the critical approach has led to a proliferation of research on the

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many ways illness affects everyday life and on how ill individuals, their families, and their friends respond to illness.

A BRIEF HISTORY OF DISEASE

One of the most important questions raised by critical sociologists is, how do social conditions cause disease? Their research (along with research conducted by historians and others) demonstrates that, across history, social factors such as poverty, urbanization, and living conditions have fostered illness. This section pro- vides a brief overview of disease throughout Western history, highlighting the role played by social forces.

The European Background

To understand health in the modern world, it helps to begin with the Middle Ages (approximately a.d. 800 to 1300), when commerce, trade, and cities began to swell (Kiple, 1993). These shifts sparked a devastating series of epidemics. The term epidemic refers to both any significant increase in the numbers affected by a disease and the first appearance of a new disease. In the fledgling European cities, people lived in close and filthy quarters, along with rats, fleas, and lice—perfect conditions for transmitting infectious diseases such as bubonic plague and smallpox. In addition, because cities lacked sewer systems, families would dump human waste into the streets, where it eventually would be washed into local rivers. As a result, typhoid, cholera, and other waterborne diseases that live in human waste flourished. Simulta- neously, the growth of long-distance trade helped epidemics spread to Europe from the Middle East, where cities had long existed and many diseases were endemic (established within the population at a fairly stable level). In addition, religious pil- grimages and crusades to Jerusalem helped spread diseases to Europe.

The resulting epidemics ravaged Europe. Waves of disease—including bubonic plague, leprosy, and smallpox—swept the continent. The worst of these was bubonic plague, popularly known as the “Black Death,” which killed at least 25 million Europeans—as much as half the population—between 1347 and 1351 (Gottfried, 1983; J. Kelly, 2005).

Although the great pandemics (worldwide epidemics) began diminishing during the 15th and 16th centuries, average life expectancy increased only slightly, for malnutrition continued to threaten health (Kiple, 1993). By the early 1700s, however, life expectancy began to increase. This change can’t be attributed to any developments in health care, for folk healers had nothing new to offer, and medical doctors and surgeons (as will be described in more detail in Chapter 11) harmed at least as often as they helped. For example, U.S. President George Washington died after his doctors, following contemporary medical procedures, “treated” his sore throat by cutting into a vein and draining much of his blood.

If advances in medicine did not cause the 18th-century increase in life expec- tancy, what did? Historians commonly trace this change to a combination of social

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factors (Kiple, 1993). First, changes in warfare moved battles and soldiers away from cities, protecting citizens from both violence and the diseases that followed in an army’s wake. Second, the development of new crops and new lands improved people’s diets and their ability to resist disease. Third, women began to have fewer children at later ages, increasing both women’s and children’s chances of survival. Fourth, women less often spent long hours in exhausting fieldwork and so were more often strong enough to survive childbirth. Infants, too, more often survived because mothers could more easily keep their children with them to breastfeed. (This would change soon, however, for the many women who would become workers in emerging factories.)

Disease in the New World

In the New World, meanwhile, colonization by Europeans was decimating Native Americans (Kiple, 1993). The colonizers brought with them more than a dozen new diseases—including influenza, measles, and smallpox—for which the Native Americans had no natural immunities. These diseases ravaged the Native Ameri- can population, in some cases wiping out entire tribes (Crosby, 1986). Conversely, life expectancy increased for those who emigrated from Europe to the colonies be- cause the New World’s vast lands and agricultural resources protected them against the malnutrition and overcrowding common in Europe.

The Epidemiological Transition

As industrialization and urbanization increased, many—especially the urban poor—began dying at younger ages. The main killer was tuberculosis, followed by influenza, pneumonia, typhus, and other infectious diseases. Except for tubercu- losis, these diseases are all considered acute diseases—that is, diseases that strike suddenly and disappear quickly, sometimes killing their victims, sometimes causing only mild illness. By the late 19th century, however, deaths during infancy and childhood and deaths at all ages from infectious disease began to decline rapidly. Between 1900 and 1930, life expectancy—the average number of years individ- uals can expect to live—increased from 47 to 60 years for whites and from 33 to 48 years for African Americans (Arias, 2003).

As infectious diseases declined in importance, chronic diseases gained impor- tance. Chronic diseases are those that typically last several years or more such as muscular dystrophy and asthma. During this period, heart disease, stroke, arthritis, and diabetes became major causes of illness and disability. Increasingly, too, these conditions shifted from primarily diseases of the affluent (formerly the only peo- ple likely to enjoy long lives) to disproportionately diseases of the poor.

The shift from a society characterized by infectious and parasitic diseases and low life expectancy to one characterized by degenerative and chronic diseases and high life expectancy is referred to as the epidemiological transition (McKeown, 2009). This transition seems to occur around the world once a nation’s mean per capita income reaches a threshold level (in 2017 dollars) of around $11,900 (Wilkinson, 1996). (See “Key Concepts: The Epidemiological Transition,” p. 12)

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Contrary to conventional wisdom, medical interventions such as vaccinations, new drugs, and new surgical techniques played little role in the epidemiological transition (Leavitt and Numbers, 1985; McKeown, 1979; McKinlay and McKin- lay, 1977). For example, deaths from tuberculosis, scarlet fever, and typhoid were all declining steadily by the early 1900s, even though doctors had no effective treatments for these diseases until the 1940s (McKinlay and McKinlay, 1977). The same was true for most other infectious diseases of that era. Similarly, historians and other scholars suggest that medical care explains no more than one-sixth of the overall increase in life expectancy during the 20th century and no more than 10% of the risk of dying in any given year (Bunker, Frazier, and Mosteller, 1994; McGinnis, Williams-Russo, and Knickman, 2002; Schroeder, 2007).

How, then, can we explain the epidemiological transition? The answer appears to lie in changing social conditions. Even though doctors at the time misunder- stood the causes of various diseases, public health measures such as the devel- opment of clean water supplies and sanitary sewage systems virtually eliminated waterborne diseases like typhoid. These measures also reduced the number of mi- nor infections individuals acquired, increasing their overall health and reducing the risks of dying from diseases such as pneumonia and tuberculosis. Cleaner water systems accounted for almost half of the overall rise in life expectancy and two- thirds of the decrease in deaths among infants between 1900 and 1940 (Cutler and Miller, 2005). Similarly, as living conditions and access to healthy foods improved, so did the ability of individuals to resist infection and survive if they became infected.

The Epidemiological Transition

The epidemiological transition refers to the point in a society’s history when deaths from infectious and parasitic diseases fall significantly; life expectancies increase significantly; and, consequently, degenerative and chronic diseases become more common. For example:

Transition Stage

Stage Indicators

Pre-Transition: United States, 1850

In Transition: India, 2018

Post-Transition: United States, 2018

Life Expectancy 40 years for whites 23 for African Americans

69 years 78 years for whites 75 for African Americans

Deaths from parasitic and infectious diseases

Frequent Less frequent than in the past, rare among the growing middle and upper classes

Rare

Deaths from chronic diseases

Rare Increasingly frequent Frequent

KEY CONCEPTS

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All these forces reduced the likelihood that babies would die young. As a result, parents no longer needed to have many children to ensure that one or two would survive long enough to support them in old age. At the same time, as adults increasingly shifted to working in factories—some of which offered pensions—their need to have numerous children to help on the farm or care for them in old age declined. As a result, adults had fewer children and could devote more resources to each child, further increasing their children’s chances of survival.

UNDERSTANDING RESEARCH SOURCES

The preceding discussion on the history of disease, as well as numerous other discussions you will read in this book, may well challenge your previous ideas about health and illness. To respond intelligently to these challenges, you need to understand how researchers evaluate research sources and data. “Contemporary Issues: ‘Scienciness’” (p. 13) explores some of the problems that may arise when the public lacks the tools to evaluate research data.

Evaluating Research Sources

In any field, scholars give the most credibility to research that is published in the most prestigious journals. In the sociology of health, such journals include the Journal of the American Medical Association, the New England Journal of Medicine, the American

CONTEMPORARY ISSUES

“Scienciness”

The rise of the Internet has made it particularly easy for individuals and corporations to use “scienciness”—the aura of scientific research—to sell the public on highly dubious measures for treating or preventing illness. For example, the first webpage identified in a November 3, 2010, Google search for “cure cancer” declared, “Cancer can be cured and prevented naturally and scientifically. . . . [These are] facts that have been proven in scientific labs, by doctors” (www.1cure4cancer.com). The main purpose of the site is to convince viewers to buy laetrile, an extract typically made from apricot or almond pits. To do so, the website uses “scientific” language (“Laetrile is a decomposition product resulting from the hydrolysis of amygdalin”) and “scientific credentials” (mentioning the names and university affiliations of doctors who, it claims, have proven laetrile’s effectiveness).

In reality, no true scientific research has ever found evidence that laetrile works, and no reputable scientific journals have ever published articles in favor of laetrile. Studies have, however, found that cyanide found naturally in apricot and almond pits can cause liver damage, coma, and even death (National Cancer Institute, 2010). Meanwhile, a vast number of other websites use scientific-looking charts, “doctors” with degrees in art history, and self-published “journal articles” to sell useless or potentially dangerous treatments for everything from acne to acquired immunodeficiency syndrome (AIDS) to individuals who don’t understand how to evaluate research sources and data (Goldacre, 2010).

14 C H A P T E R 1

Journal of Sociology, and the Journal of Health and Social Behavior. These journals are held in high esteem because each has existed for a long time, has a large readership, publishes only a small percentage of the manuscripts it receives, and uses peer re- view (that is, has several scholars review each manuscript before the journal decides whether to publish it).

Similarly, scholars are most likely to trust data that come from reliable nonprofit and nonpartisan sources. Thus this book draws heavily on statistics collected by the U.S. government and by nonprofit groups such as the Mayo Clinic, the Kaiser Foun- dation, and the World Health Organization (WHO), a United Nations orga- nization charged with documenting health problems and improving world health. Because these statistics are collected by bureaucrats whose employment typically con- tinues regardless of shifts in the political climate rather than by groups with a partic- ular political agenda, they are generally regarded as the most objective data available. This holds true whether the data are found in print sources or on the Internet.

Box 1.1 suggests some long-standing Internet sites that provide particularly useful information about health issues.

Evaluating Research Data

Both medical and sociological studies can be broadly divided into two research categories: qualitative and quantitative. In qualitative studies, researchers may spend months conducting in-depth interviews or observing a community. Qual- itative research is evaluated most highly if the researcher actively sought data that might support or challenge his or her preconceived notions and if the data the researcher offers seem to logically support the conclusions he or she draws from that data. Qualitative research is most useful for helping us understand how people

Useful Internet SourcesB o x 1.1

■ www.healthfinder.gov: Run by the United States Department of Health and Human Services, this site offers a wide range of health information as well as an extensive set of links to other government and nongovernmental health-related sites.

■ www.nlm.nih.gov: This site provides access to both published and unpublished materials available at the National Library of Medicine, the largest medical library in the world.

■ www.mayoclinic.org: Run by the nonprofit Mayo Clinic, this site offers consumer health information plus the opportunity to e-mail questions to physicians.

■ www.gapminder.org: Gapminder is a Swedish nonprofit organization that provides free access to international health-related data and software for vividly displaying that data.

■ www.who.int: WHO’s website provides a vast array of information about health, illness, and health care around the world.

■ Scholar.google.com: This branch of the Google search engine takes viewers only to scholarly journal articles, on health as well as other topics. This is an excellent starting point for finding reputable information on any topic.

15T H E S O C I O L O G Y O F H E A LT H , I L L N E S S , A N D H E A LT H C A R E

understand their lives, why people behave or think in specific ways, and how social interaction works.

In contrast, quantitative research aims to understand people, nature, and so- ciety by finding ways to turn observations into numbers and statistics. It is most useful for assessing how often something occurs and how one thing may cause another. Quantitative research is especially useful when based on large samples be- cause such data are more likely to reflect trends among the population as a whole. Research based on random samples is held in particularly high regard. In a ran- dom sample, each member of a population has an equal chance of being selected (such as when names are drawn out of a hat), so researchers can be more confident that selected individuals will be representative of the population as a whole.

Quantitative research is regarded most highly when the researchers control for the potential influence of extraneous factors—that is, they use statistical techniques to eliminate the possibility that something else caused whatever the researchers are studying. For example, compared to nonsmokers, Americans who smoke cigarettes are more likely to get lung cancer and to be white. To determine whether smoking or race causes lung cancer, researchers could divide their sample into four groups—white smokers, white nonsmokers, nonwhite smokers, and nonwhite nonsmokers—and then see what percentage of each group gets cancer. (In fact, among both whites and nonwhites, those who smoke are more likely to get lung cancer.)

One important recent trend in quantitative research is the rise of big data: huge studies that pull together multiple sets of data from entire populations. For example, researchers were able to combine two national Danish registries—one of every case of brain cancer in Denmark and one of every person who owned a cell phone, beginning when cell phones were first introduced to the country—to con- vincingly argue that cell phone use does not cause brain cancers (Frei et al., 2011).

Research based on big data is particularly convincing because it reflects virtu- ally the entire population, so research results are likely to apply to everyone in that population. In addition, because big data were typically collected initially for some other purpose, they are less likely to be biased (as might happen, for example, if a pharmaceutical company collects data on the effects of a drug it produces). Big data are likely to play a growing role in sociological and medical research in com- ing years, especially as doctors and health care systems increasingly record patient data electronically (Bates et al., 2014).

SUMMARY

1. Topics in the sociology of health, illness, and health care include the nature of the health care system; how social forces promote health and illness; the experience of living with illness or disability; and the status, power, training, and values of health care providers.

2. The sociological perspective sets sociologists apart from other health and social researchers. This perspective focuses on explaining social patterns rather than individual behavior and on identifying and resolving public issues rather than personal problems.

16 C H A P T E R 1

3. Sociology in medicine refers to sociological research that focuses on answering questions that doctors consider useful.

4. Sociology of medicine focuses on how power affects health, illness, and health care. Sociology of medicine is a branch of critical sociology that focuses more generally on the sources, nature, and consequences of power.

5. Although disease has always accompanied human life, patterns of diseases have varied over time and place for both social and biological reasons.

6. Epidemics refer to any significant increase in the numbers affected by a disease or to the first appearance of a new disease. Pandemic diseases are worldwide epidemics, such as HIV/AIDS currently. Endemic diseases are those that continue to appear in a population at a relatively stable rate.

7. Devastating epidemics accompanied the rise of cities in medieval Europe. By the early 18th century, however, life expectancy began to increase, primarily because of improved living and working conditions, later and less frequent childbirth, and changes in military strategies that separated soldiers and civilians.

8. Life expectancy increased further in the late 19th century, primarily because of improvements in nutrition, living conditions, and public sanitation rather than medical advances. Still, as in previous eras, the main causes of death were infectious and parasitic diseases.

9. Currently, the main causes of death in Western nations are chronic illnesses of middle and old age. The shift from a society characterized by low life expectancy and infectious and parasitic diseases to one characterized by high life expectancy and chronic diseases is known as the epidemiological transition.

10. To evaluate printed or online sources, readers must ask whether their data come from a reputable source, were peer reviewed or otherwise checked for quality and bias, were based on a representative sample of reasonable size, and were controlled statistically for possible confounding factors.

REVIEW QUESTIONS

1. What is the sociological perspective?

2. How do the questions sociologists ask differ from those asked by psychologists?

3. What does this textbook mean by a critical approach?

4. What is the epidemiological transition?

5. What is the difference between acute and chronic diseases?

6. What factors caused the decline in mortality between the 19th and early 20th centuries?

7. What are some ways a reader can tell whether a journal article or Internet website is a reliable source of data?

17T H E S O C I O L O G Y O F H E A LT H , I L L N E S S , A N D H E A LT H C A R E

CRITICAL THINKING QUESTIONS

1. How can knowing the history of disease help us to understand both current health problems and how health patterns might change in the future?

2. Write three research questions about the causes of cancer. The first should be a question a doctor might ask, the second a question a psychologist might ask, and the third a question a sociologist might ask.

3. Assume you have found a website that argues for vitamin C as a cure for the common cold. List three questions you would want to ask before deciding whether to believe the website.

C H A P T E R

The Social Sources

of Modern Illness

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19T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Use key epidemiological terms to describe the health of a population. ● Describe the modern disease profile in Western nations. ● Understand how social factors can lead to preventable deaths. ● Analyze the social processes that encourage or discourage healthy

behaviors. ● Identify the impact of social networks and social stress on health.

Judy Cude and her daughter Jenny live in the small city of Dickson, Tennessee. When Jenny was about to give birth to her first child, Judy went with her to the hospital. At first, everything seemed fine:

The attending physician kept up a cheerful, reassuring stream of talk as he assisted Jenny with her labor. “Peyton came out face down. When Dr. Booker turned [the baby] over, he stopped talking,” Judy recalled. “He had his back to us, but when the nurse gave him a shove, he turned around, and he had tears running down his cheeks.”

The baby’s face was badly disfigured with a cleft lip and a bilateral cleft palate. And though they did not know it immediately, Peyton also had a damaged heart, a valve that failed to close properly. . . .

Two weeks after Peyton was born, Jenny was given the name of another mother in Dickson whose child, born a couple of months earlier, also had a cleft lip and palate. Then a woman called Judy at her day care center and asked if she could accommodate children with special needs because ultrasound tests found that her child was about to be born with a cleft palate. “That made three,” Judy said. She and the other mothers kept a tally. Soon they had counted six. Judy placed a newspaper advertisement asking families with similar defects to contact her. And, as it turned out, 19 children had been born in Dickson with a cleft lip and palate in a little over two years. The odds against such a series of identical birth defects were almost certainly too high to be coincidental. [Moreover,] within a brief period, four babies were born with a rare brain malformation, where the two hemispheres of the brain are not connected. There have been a large number of cases of hypospadias, a condition in male children where the urethra is inverted. Dickson families also reported a high incidence of heart defects and leukemia among their babies.

Eventually Judy would learn that most of the affected children lived near the Dickson County landfill and that toxic wastes, including chemicals known to cause cancers and birth defects, had been dumped there for years. (Shabecoff and Shabecoff, 2010:4–5)

20 C H A P T E R 2

At one level, disease is a biological process existing within an individual body. As Judy’s story suggests, however, disease can stem from social conditions as well as from individual biology. In this chapter, we explore the social sources of disease. After reviewing the basic concepts needed to discuss diseases, we review modern disease patterns. Then we focus on the major social sources of premature death in the United States today (including environmental toxins). Finally, we explore social factors that affect whether people will adopt healthier behaviors and whether individuals will remain healthy regardless of their behaviors.

AN INTRODUCTION TO EPIDEMIOLOGY

The first essential concepts that students of health and illness need to understand are disease and illness. To researchers and clinicians working with physical health problems, disease refers to biological problems within organisms. In contrast, illness refers to the social experience and consequences of living with a disease. Using these terms, we might say that a man who is infected with the poliomyelitis virus must adapt to physical disability caused by the disease called polio and to changes in how others view him because he has the illness called polio. (Chapter 5 will discuss the meaning of illness in more detail, and Chapter 7 will discuss how these concepts are applied a bit differently to mental health problems.)

The study of the distribution of disease within a population is known as epidemiology. This chapter and the next focus more specifically on social epide- miology, or how social behaviors and factors (such as social class or use of tobacco) affect the distribution of disease within a population. For example, whereas biolo- gists might investigate whether heart disease is more common among those with high cholesterol levels, social epidemiologists might investigate whether it is more common among those with high incomes.

But what do we mean when we say a disease is “more common” among one group than another? Data on infection with the human immunodeficiency virus (HIV), the virus that in its later stages causes acquired immunodefi- ciency syndrome (AIDS), provide a useful example. (This book uses the term HIV/AIDS to refer to the full range of illness from the earliest stages of infection with HIV to full-blown AIDS.)

As of 2014 (the latest data available as of 2018), more than twice as many Bra- zilians have HIV/AIDS as do Botswanans (Population Reference Bureau, 2014). At first glance, this might suggest that HIV/AIDS is a much greater problem in Brazil than in Botswana. However, Brazil’s population is much larger than that of Botswana. To take this difference into account, epidemiologists typically look at the rate rather than the number of HIV/AIDS cases in a population. Rate refers to the proportion of a specified population that experiences a given circumstance. For example, to learn the rate of a HIV/AIDS in Brazil, we would divide the number of people in Brazil who have the disease into the total number of people in the country. In 2013, the rate of HIV/AIDS among adults was 3 per 1000 adults in Brazil compared with 234 per 1000 adults in Botswana (Population Reference

21T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

Understanding Rates

Concept Example Advantages and Disadvantages

Raw number

Around 10,000 Americans get tuberculosis each year.

Hard to interpret on its own: 10,000 out of 100,000 would be much scarier than 10,000 out of 300 million (the size of the U.S. population).

Incidence rate

The incidence of tuberculosis in the United States is currently 3 per 100,000: there were 3 new cases last year for every 100,000 Americans. In contrast, 10 years ago the incidence of tuberculosis was 6 per 100,000.

Provides overview of the increase or decrease of a disease, behavior, or condition: how many new cases have been identified.

Prevalence rate

The prevalence of arthritis in the United States is 230 per 1000: out of every 1000 U.S. residents, 230 have arthritis (whether diagnosed recently or years ago).

Provides overview of the magnitude of a disease, behavior, or condition: how many people have it now, regardless of when they got it.

KEY CONCEPTS

Bureau, 2014). This tells us that HIV/AIDS affects a greater proportion of the popu- lation in Botswana than in Brazil. It also demonstrates the advantage of using rates rather than raw numbers.

Two particularly useful types of rates are incidence and prevalence rates. Inci- dence refers to the number of new occurrences of an event (disease, births, deaths, etc.) within a population during a specified period. Prevalence refers to the total number of cases within a population at a specified time—both those newly diag- nosed (incidence) and those diagnosed in previous years but still living with the condition under study. “Key Concepts: Understanding Rates,” p. 21, provides a helpful comparison.

In general, incidence better measures the spread of acute disease. The term incidence also better measures rapidly spreading diseases such as HIV/AIDS. For example, to see how HIV/AIDS has spread, we might compare its incidence in 1981 with its incidence today. Prevalence, on the other hand, better measures the frequency of chronic diseases.

Two final terms often used in epidemiology are morbidity and mortality. Morbidity refers to symptoms, illnesses, and impairments; mortality refers to deaths. To assess the overall health of a population, epidemiologists typically calcu- late the rate of serious morbidity in a population (i.e., the proportion with serious illness) and the rates of infant mortality and maternal mortality (i.e., the propor- tion of infants and childbearing women who die during or soon after childbirth). In addition, they typically calculate life expectancy (the average number of years individuals born in a certain year are likely to live).

22 C H A P T E R 2

But what if one population is much older than another? Because younger people have decidedly different health risks than older people, it would be mis- leading to compare these populations without taking this into account. For ex- ample, Arizona’s population is younger on average than North Dakota’s, so we would expect Arizona to have more deaths from skydiving and fewer from heart disease than North Dakota. To deal with this issue, epidemiologists use age- adjusted rates. These rates are calculated using standard statistical procedures that, as Chapter 1 described, control for the effect of age differences among populations.

The next section uses epidemiological concepts and data to describe current disease patterns.

THE MODERN DISEASE PROFILE

As the previous chapter discussed, patterns of disease had shifted markedly by the beginning of the 20th century. No longer did most people in Western nations die young of infectious or parasitic diseases (even though such diseases still rav- aged poorer nations). Instead, most children survived childhood without major illnesses, and most adults died in old age of chronic disease. Yet infectious disease is on the rise once again.

The New Rise in Infectious Disease

The rising threat from infectious diseases first made medical news in 1981 when the first cases of what would become known as HIV/AIDS were identified. Since then, other new infectious diseases (such as Zika and Ebola virus diseases) have been identified, long-established diseases (such as cholera and streptococcus) have become deadlier, and previously harmless microorganisms (such as the virus that causes avian influenza or so-called bird flu) have caused important disease out- breaks (Armelagos and Harper, 2010; Oldstone, 2010).

The renewed dangers posed by infectious disease partly reflect basic principles of natural selection. Just as natural selection favors animals whose camouflaging coloration hides them from predators long enough to reproduce, natural selection favors microorganisms that can resist drug treatments. As doctors prescribed anti- biotics more widely, often under pressure from patients who feel cheated if they don’t receive a prescription each visit, the drugs killed all susceptible variants of disease-causing microorganisms while allowing variants resistant to the drugs to flourish. Similarly, drug-resistant tuberculosis is increasing in nations where HIV/ AIDS and poverty leave individuals both more susceptible to infection and less able to afford consistent, effective treatment. Meanwhile, the growing use of an- tibiotics in everything from cutting boards to kitty litter, chicken feed, and soaps also encourages the rise of drug-resistant bacteria.

Other forces also promoted the rise in infectious diseases (Oldstone, 2010). In the same way that population growth and the rise of cities once fostered the spread of infectious diseases in Europe, they are now causing new epidemics in

23T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

rapidly growing cities in Africa, Asia, and Latin America (Armelagos and Harper, 2010). Meanwhile, older cultural traditions often erode among those who move to these cities, making health-endangering activities such as tobacco smoking and sexual experimentation more likely. At the same time, industrial plans and cities are growing into former forests and farmlands, bringing wild animals increasingly into contact with humans. As a result, microorganisms that previously had infected only animals now have the opportunity to infect humans as well (Quammen, 2013).

All of these factors have been heightened by globalization, the process through which ideas, resources, people, and trade increasingly operate in a worldwide rather than local framework. The erosion of cultural traditions in Asia, Africa, and Latin America reflects, among other things, the increasingly global spread of Western ideas by tourists, the mass media, businesspeople, and nongovernmental organizations such as the United Nations and the International Monetary Fund. Similarly, environmen- tal changes that encourage disease partly stem from actions taken by Western-based industries and corporations, which now find it easy to operate internationally be- cause of various international trade agreements. In addition, the globalization of business investment and tourism has globalized disease simply by increasing the number of people traveling from one region to another (Oldstone, 2010).

Finally, the rise in infectious disease reflects political decisions as well as bi- ological realities. For example, providing clean needles to those who use illegal drugs is a proven way of controlling the spread of HIV/AIDS and does not seem to lead to greater use of drugs (Holtgrave and Curran, 2006). Yet only in 2016 did the United States end a federal ban on funding needle-exchange programs. Simi- larly, the Russian government’s policy of imprisoning large numbers of individuals in miserable conditions has led to a rapid increase in tuberculosis in prisons and then in society at large whenever prisoners are released (Goozner, 2008).

Today’s Top Killers

Despite the recent reemergence of infectious diseases, however, such diseases still play a relatively small role in U.S. mortality rates. Table 2.1 shows the top 10 causes of death in the United States in 2016 (the latest data available as of 2018) and illustrates how these causes have changed since 1900.

As the table demonstrates, the top killers in 1900—influenza, pneumonia, and tuberculosis—were infectious diseases that could strike at any age. Most of today’s top killers—including heart disease, cancer, Alzheimer’s, and diabetes—are chronic diseases primarily associated with older populations. These diseases now far out- pace infectious diseases as causes of death.

But infectious diseases have not disappeared. Influenza and pneumonia remain significant causes of death, although mostly they kill elderly people already in poor health. In addition, HIV/AIDS remains a significant cause of death among African Americans, who are less likely than others to have access to highly ef- fective drugs for treating and preventing the disease (National Center for Health Statistics, 2017a). Finally, Table 2.1 illustrates the role that social factors play in mortality rates. Accidental deaths mostly stem from motor vehicle accidents (many

24 C H A P T E R 2

of them linked to alcohol use), whereas tobacco use is the main cause of chronic respiratory disease and is a common contributor to heart disease, cancer, and cere- brovascular disease (strokes). Similarly, diabetes (which is a main cause of kidney disease) largely reflects diet and exercise patterns. Each cause of death reflects social behaviors rooted in social conditions. The remainder of this chapter discusses the role social forces play in mortality and morbidity.

THE SOCIAL SOURCES OF PREMATURE DEATHS

In a widely cited article titled “A Case for Refocusing Upstream,” sociologist John McKinlay (1994) offered the following oft-told tale as a metaphor for the modern doctor’s dilemma:

Sometimes it feels like this. There I am standing by the shore of a swiftly flowing river and I hear the cry of a drowning man. So I jump into the river, put my arms around him, pull him to shore and apply artificial respiration. Just when he begins to breathe, there is another cry for help.

So I jump into the river, reach him, pull him to shore, apply artificial respiration, and then just as he begins to breathe, another cry for help. So back in the river again, reaching, pulling, applying, breathing, and then another yell. Again and again, without end, goes the sequence. You know, I am so busy jumping in, pulling them to shore, applying artificial respiration, that I have no time to see who the hell is upstream pushing them all in. (McKinlay, 1994: 509–510)

Main Causes of Deaths, 1900 and 2016TABLE 2.1

1900 Rate per 100,000 2016

Rate per 100,000

Influenza and pneumonia 202 Heart disease 166

Tuberculosis 194 Cancer 156

Diarrhea, enteritis, intestinal ulcers 143 Accidents 47

Disease of the heart 137 Chronic lower respiratory diseases

Cerebrovascular diseases (strokes) 107 Cerebrovascular diseases (strokes)

Chronic kidney disease 89 Alzheimer’s disease 30

Accidents 72 Diabetes 21

Cancer 64 Influenza and pneumonia 14

Senility 50 Suicide 14

Diphtheria 40 Kidney disease 13

SOURCE: National Center for Health Statistics (2018)

25T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

This story illustrates the traditional emphasis within medicine on diagnos- ing and treating illness and disability rather than preventing it. Moreover, even when doctors, researchers, and others do focus on preventing illness, they typically look only far enough upstream to see how individual psychological characteristics (such as poor impulse control) or biological characteristics (such as a gene) may make some people more susceptible than others to disease or unhealthy behaviors. In contrast, although sociologists agree that biological and psychological factors affect health, they also recognize that these factors don’t operate in a vacuum. For example, adolescents are most likely to drink alcohol dangerously if their friends and family do so. Similarly, the high rates of diabetes found among contemporary Native Americans partially reflect individual decisions regarding exercise and diet. But they also reflect the effects of living on reservations with ready access to fatty and sugary foods, limited access to fresh fruits and vegetables, and high rates of poverty, which can lead to poor nutrition and in the long run to diabetes (Be- nyshek, Martin, and Johnston, 2001). In both cases, to blame unhealthy behavior patterns on individual choices seems simplistic.

As these examples suggest, truly refocusing upstream requires us to look be- yond individual behavior or characteristics to what McKinlay refers to as the manufacturers of illness: those groups that promote illness-causing behaviors and social conditions. These groups include alcohol distributors, auto manufactur- ers that fight against vehicle safety standards, and politicians who vote to subsidize tobacco production.

One way to refocus upstream is to examine data on the underlying causes of premature deaths—that is, deaths caused by neither old age nor genetic disease (McGinnis, 2015). Table 2.2 shows these causes and their prevalence (listed not by disease but by the factors that cause disease). The next section looks at these 10 causes of illness.

Diet, Exercise, and Obesity

According to McGinnis (2015) and many others, a high-fat diet and sedentary modern lifestyles have led to soaring rates of obesity across all age groups. In turn, they argue, obesity has led to premature deaths from cardiovascular disease, strokes, certain cancers, and diabetes. Moreover, even when obesity doesn’t kill, it can lead to heart conditions, diabetes, sleep difficulties, and other problems that diminish individuals’ quality of life (CDC, 2012).

The Obesity Myth? At the same time, however, research has accumulated suggesting that the dangers of excess weight have been overstated (Campos, 2004; Gibbs, 2005). The best current research (Flegal et al., 2005, 2013) strongly suggests that death rates (after controlling for smoking, illness, and other factors) are indeed highest among those who are obese (e.g., 5' 6" and more than 180 pounds). But death rates are second highest among those who are underweight (e.g., 5' 6" and less than 112 pounds). Moreover, death rates are lowest in those who are overweight, but not obese; those considered normal weight have the second lowest death rates.

26 C H A P T E R 2

Why have studies disagreed so dramatically about the impact of weight on mortality? Earlier studies were based on narrow populations (such as middle-aged nurses), relied on self-reported weights and heights, controlled statistically for few variables, and may not have reflected current conditions. In addition, many of the studies that stressed the health risks of obesity were funded by the diet industry, which may have colored the findings. In contrast, recent studies that have ques- tioned the dangers of overweight and obesity were conducted by government researchers whose research studies were primarily federally funded. Finally, con- siderable research suggests that the real danger is not obesity but physical activity and fitness (Blair and Church, 2004): Those who are obese but physically fit have half the death rate of those who are normal weight but unfit.

“Supersizing” Americans Why have Americans gained so much weight over the past generation? To answer this question, we need to look at how biology, economics, and politics interact (Critser, 2003).

Biologically, humans naturally desire sweet and fatty foods. In past eras, when food was scarce, these cravings helped humans stay alive. Now, though, most Amer- icans have plentiful access to food and eat more calories than their bodies can use, leading in the long run to weight gain. In addition, the rapid adoption by food manufacturers of high-fructose corn syrup (an inexpensive sweetener) and palm oil (an inexpensive fat) may have spurred rapid weight gains because the former is metabolized by the body differently than are other sugars, and the latter is an especially saturated fat (Critser, 2003).

Underlying Causes of Premature Death in the United States, 2010

TABLE 2.2

Cause Percentage of All Deaths

Diet or activity patterns 18%

Tobacco 15

Medical errors in hospitalsa,b 3–13

Alcohol 3

Bacteria and virusesc 2

Toxic agents 2.5

Firearms 1.5

Motor vehiclesd 1

Sexual behavior 1

Illicit use of drugs 1

Total 48

aEstimates vary. bOnly includes reported deaths from medical error. cDoes not include deaths related to HIV, tobacco, alcohol, illicit drugs, or infections caused by nonmicrobial diseases. dIncludes motor vehicle accidents linked to drug use but not to alcohol use.

SOURCE: James (2013); Makary and Daniel (2016); National Research Council, Institute of Medicine (2015)

27T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

To these changes in what Americans eat were added changes in how much Americans eat. Longer work weeks and the increase in two-earner and single- parent families have led Americans to eat out more than ever before: Between 1970 and 2012, the percentage of Americans’ food expenditures devoted to eat- ing out increased from 25% to 43% (U.S. Department of Agriculture, 2017). Yet restaurant foods typically include far more fat and sugar than do homemade meals. Moreover, since the 1970s, restaurants increasingly have offered “supersized” por- tions, buffet tables, and packaged “value meals.” Unfortunately, few individuals can restrict their calorie intake when offered large, varied meals, so this trend has increased calorie consumption. For these reasons, the rise in eating away from home has increased Americans’ calorie consumption by an average of 1400 calo- ries per person per week (Critser, 2003:33). For example, teenage boys who eat at fast-food restaurants three or more times a week consume 800 more calories per day than do those who avoid fast food (French et al., 2001).

Food manufacturers and the fast-food industry have used advertising to fur- ther encourage Americans to eat a sweet, fatty, high-calorie diet. Because manu- facturers earn far less money selling healthy foods (such as fruits and vegetables) than by selling highly refined products loaded with fat, sugar, and salt (such as soft drinks and convenience foods), they spend 30 times more money on adver- tising the latter foods (Nestlé, 2002:22). Such advertising has grown increasingly insidious and now pervades every sphere of our society—especially those where children can be found. Soft-drink companies, for example, encourage children to drink soda by subsidizing soda machines in schools and advertising on television, in magazines, on the Internet, and via iPad apps, cell phones, and video games (Scharf and Deboer, 2016). Consumption of sugar-sweetened soft drinks is directly and substantially related to obesity and diabetes among both adults and children (Scharf and Deboer, 2016).

Meanwhile, as caloric consumption has increased, physical exercise has de- creased. Because of budget cuts, only around one-third of U.S. states require any time spent in physical education, and many of those have only minimal require- ments (Shape America, 2016). And at home, few children these days are allowed to spend their afternoons running free or playing nonorganized sports. Instead, poor children are admonished to stay indoors to stay safe, and more affluent children are shepherded from tutors to classes, to the occasional sports activity. Finally, few chil- dren or adults nowadays commute by foot or bicycle to work, play, or shopping, so physical activity is no longer built into most Americans’ daily lives.

Tobacco

As Table 2.2 shows, tobacco is a highly important source of preventable deaths in the United States. Whether smoked, chewed, or used as snuff, tobacco can cause an enormous range of disabling and fatal diseases, including heart disease, strokes, emphysema, and numerous cancers. As many as half of all smokers will die because of their tobacco use, losing an average of 15 years from their normal life expectancy. Tobacco use also increases morbidity and mortality among “passive smokers,” those who live and work around smokers (WHO, 2017a). Similarly,

28 C H A P T E R 2

both active and passive smoking can cause birth defects and infant mortality. Un- fortunately, quitting smoking is difficult because nicotine (the active ingredient in tobacco) is highly addictive.

Given nicotine’s addictiveness, it’s easy to understand why individuals con- tinue smoking once they have started. But why do individuals begin smoking in the first place, especially when many initially find tobacco vile tasting and even nauseating? To answer this question, we need to look at the role played by tobacco manufacturers.

Since the 1960s, when research first proved the link between smoking and lung cancer, tobacco manufacturers have labored to convince the public—especially youths, women, and minorities—to associate tobacco with positive attributes rather than with death and disability (Luke, Esmundo, and Bloom, 2000). To target youths and minorities, manufacturers have advertised in movie theaters and at sports events. To target women, manufacturers have played on women’s desire for equality, excitement, personal fulfillment, and weight loss. This strategy was exem- plified by the campaign for Virginia Slims—the name was not accidental—and its slogan, “You’ve come a long way, baby.”

Since the 1990s, successful legal attacks on tobacco manufacturers and ad- vertisers have eroded their ability to attract new customers. For example, tobacco companies can no longer use cartoon characters in advertisements and now must limit their sponsorship of sports and entertainment events. Public health cam- paigns have also had an impact. Partly because of these campaigns, Americans in- creasingly support the idea of “smoke-free” areas and a smoke-free culture (Givel and Glantz, 2004; National Center for Health Statistics, 2014a).

As cigarettes have become less popular, however, tobacco manufacturers have begun promoting electronic cigarettes (commonly known as e-cigarettes) as a safer and “cooler” alternative. “Vaping” e-cigarettes has become widely popular, espe- cially among adolescents attracted in part by flavors such as bubble gum that are targeted at their age group (Jarmul et al., 2017; Wahowiak, 2017). Unfortunately, although e-cigarettes seem clearly safer than regular cigarettes and can help people stop smoking the latter, they still contain nicotine and still can lead to addiction. More research is needed before we can fully assess their benefits and harms.

Medical Errors

Surprisingly, recent research suggests that medical errors are one of the top causes of preventable deaths (James, 2013; Makary and Daniel, 2016). Medical errors include conducting surgery on the wrong patient, giving a patient two drugs that interact dangerously, or misdiagnosing and hence mistreating a patient.

When errors occur, it is natural to focus on identifying who is to blame. Yet most errors occur despite the best efforts of health care workers (Kohn, Corrigan, and Donaldson, 1999). Consequently, most researchers argue that we need to shift our focus from individual errors to problematic systems (Makary and Daniel, 2016; Singer and Vogus, 2013). For example, many hospitals stock certain drugs only at full strength, even though the drugs must be diluted to use safely. Stock- ing these drugs in diluted form would eliminate this source of death much more

29T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

effectively than trying to identify every doctor or nurse who might administer the wrong dosage. Similarly, fatal errors can easily occur when different drugs have similar names: Someone with epilepsy, for example, who receives the antifungal drug Lamisil instead of the antiepileptic Lamictal can die if his seizures continue unabated. As this suggests, most fatalities result from the combination of human error with systems that facilitate errors.

The lack of a system for identifying deaths caused by medical errors has ham- pered efforts to prevent such deaths. During the 1950s and 1960s, hospitals rou- tinely autopsied around half of the patients who died in their care. Now, because of a combination of economic costs and fear that identifying errors might lead to malpractice claims, hospitals autopsy only around 5%, thus virtually eliminating one of medicine’s most basic tools for identifying medical errors (Burton and Collins, 2014).

Medical culture, too, makes it difficult to control medical errors. Research consistently finds that doctors rarely focus on identifying such errors (Bosk, 2003; Orlander and Fincke, 2003; Pierluissi et al., 2003). Instead, because of professional etiquette, the need to maintain good relations with colleagues, and a medical culture that values individual doctors’ right to make their own decisions, most errors are ignored, labeled unavoidable, blamed on nonmedical staff, or blamed on doctors in other divisions (Pierluissi et al., 2003).

Awareness of these problems has sparked efforts to improve the situation. For example, Veterans Administration hospitals now use a computerized record system that gives nurses and doctors access to comprehensive information on their pa- tients. In addition, the record system generates bar-coded strips that are attached to each nurse, patient, and medication. Before administering medications, nurses must scan their own bar code, their patients’ bar codes, and the medications’ bar codes into a computer. The computer then checks that the nurse has the right drug for the right patient and that the drug won’t interact dangerously with any other drug taken by that patient. The federal government now provides this record system for free to all U.S. doctors who treat patients under Medicare, the federally funded insurance program for elderly and permanently disabled individuals.

Alcohol

Like tobacco, alcohol kills far more people than do all illegal drugs combined. Heavy alcohol use can cause irreversible brain damage, hepatitis, heart disease, cirrhosis of the liver, and cancers of the digestive system while reducing the body’s ability to fight infections such as tuberculosis and pneumonia. In addition, by diminishing individuals’ ability to make rational choices, alcohol use contributes to deaths from drownings, fires, violence, and accidents, and it increases the odds of engaging in unsafe sexual behavior. Yet the U.S. government’s “War on Drugs” targets only illegal drugs.

To ensure that the government continues to treat alcohol as a beverage rather than a drug, alcohol manufacturers contribute heavily to political campaigns (Center for Responsive Politics, 2017). Manufacturers also have worked to define the individual drinker rather than alcohol itself as the problem by promoting

30 C H A P T E R 2

the idea that alcoholism only affects susceptible individuals, funding research on presumed biological roots of alcoholism, supporting laws that make it illegal for minors to drink, and opposing laws that would make it illegal to sell alcohol to minors (Mosher, 1995).

At the same time, alcohol manufacturers have endeavored to sell drinking to the public as a pleasurable “lifestyle.” Much of this marketing either directly or indirectly targets youths. For example, manufacturers are most likely to advertise in magazines, on television and radio shows, during athletic events that attract large youth audiences, and at popular spring break destinations [Centers for Disease Control and Prevention (CDC), 2006; Kwate, Jernigan, and Lee, 2007; Zwarun, 2006]. In addition, alcohol manufacturers have increased sales to youths by de- veloping “alcopops”: extra-sweet, fruit-flavored alcoholic beverages such as Hard Lemonade, Blast, and Skyy Blue. Advertisements for these and other alcoholic beverages typically associate alcohol with adulthood, sexual adventure, status, free- dom, excitement, and pleasure. Although in recent years alcohol manufacturers have responded to public and governmental pressure and reduced their advertising to youths, on average young people are still more often exposed to alcohol ads than are adults (Ross, Henehan, and Jernigan, 2017).

Bacteria and Viruses

Bacteria and viruses surround us all the time. Yet only rarely do individuals be- come infected, and even more rarely do these infections lead to deaths. Under what conditions do these deaths occur?

First, individuals won’t develop fatal diseases if they are vaccinated against them. Virtually all U.S. children are vaccinated before they begin school—but not nec- essarily by the recommended ages (National Center for Health Statistics, 2017a).

Second, even in the absence of vaccinations, individuals exposed to micro- organisms may not become infected unless they already are physically weakened. For example, a significant percentage of all persons admitted to hospitals—a pop- ulation that obviously is already physically vulnerable—develop infections while in the hospitals, some of them life threatening. Similarly, individuals are far more susceptible to infection if age, malnutrition, poor housing, insufficient clothing, or other difficulties weaken their bodies. This explains why American tourists rarely contract tropical diseases when they travel to countries where disease is endemic, even if they don’t get vaccinated and don’t take drugs to prevent infection.

Third, the same factors that leave some people susceptible to infection help explain why, among those who do become infected with a given disease, some die whereas others experience only minor health problems. Measles, for example, is a minor childhood disease in the United States but a major killer in poorer coun- tries (as described in Chapter 4).

Fourth, among those who become ill, death or long-term disability may not occur if individuals have ready access to good health care. For example, doctors can cure most bacterial infections in otherwise healthy individuals, and simply providing intravenous nutrition and fluids can save the lives of many infants who experience life-threatening diarrhea.

31T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

Toxic Agents and Risk Societies

McGinnis (2015) traces 2.5% of premature deaths to toxic agents: substances that can harm or kill people or other organisms. These agents can be divided into occupational hazards and environmental pollutants. In “light” industries such as electronics, workers are often exposed to a wide variety of potentially toxic solvents, such as trichloroethylene. In traditional industries such as mining and construction, welders often face substantially increased risks of lung cancer caused by toxic levels of chromium and nickel. Similarly, agricultural workers are often exposed to dangerous pesticides (as described in Chapter 3).

Unlike occupational hazards, environmental pollution most threatens children because of their still-growing bodies and immune systems, the time they spend playing outdoors, and their tendency to play on the ground and put things in their mouths (U.S. Environmental Protection Agency, 2008). Toddlers are often tempted to eat flakes of lead paint that fall on the floor in old houses or apartments and that can cause mental retardation, learning disabilities, hearing deficiencies, hyperactivity, and other problems. Pesticides on fruits and vegetables or in the air near farm fields can cause cancers and other disabilities. Air pollution can lead to asthma, bronchitis, and other respiratory problems. And hazardous waste sites and contaminated water can cause birth defects, bacterial infections, and other health problems.

In the long run, the greatest environmental health threat may be climate change. During the past quarter century, emission of carbon dioxide from fossil fuels used in industrial manufacturing and modern technologies has mushroomed. According to the Intergovernmental Panel on Climate Change (2014), a joint venture of the World Meteorological Organization and the United Nations En- vironment Programme, this change has damaged the ozone level surrounding the planet and has caused increased smog, dangerously erratic rainfall patterns, and extreme temperature changes—both up and down—around the globe. As a result, the risk of deaths from fire, floods, and malnutrition when crops fail has already risen. The same is true of disease spread when algae and bacteria grow in water supplies, when warmer climates extend the season for mosquitoes to spread disease and for bacteria to grow in improperly cooled food.

All of these hazards posed by toxic agents result directly from the modern risk society. Sociologists use the term risk society to refer to any society that depends so heavily on potentially dangerous modern technologies that the risks from such technologies become commonplace and accepted (Beck, 1992, 2006).

Individuals who become ill because of these risks face an uphill battle in gaining recognition for their illnesses (Brown et al., 2002; Brown, Kroll-Smith, and Gunter, 2000). By definition, these risks stem from technologies deemed cru- cial to a society such as the production of oil, chemical fertilizers, and biological weapons. Because these technologies bring considerable wealth and power to gov- ernments and corporations, those institutions have a vested interest in maintaining the status quo. As a result, individuals can find it exceptionally difficult to win acknowledgment for their health problems, especially when they have access only to doctors who work for the government or corporations.

32 C H A P T E R 2

Firearms

According to McGinnis (2015), firearms account for 1.5% of all premature deaths in the United States: 16,586 suicides, 10,801 homicides, 776 acciden- tal deaths, and 270 shooting deaths by police. Death rates from firearms have shown little change over the last few decades and are almost six times higher in the United States than in other high-income nations (Wintemute, 2015). Although many believe that they can protect themselves from violence by own- ing a gun, numerous studies have found that a gun in the home significantly increases the odds of suicide, homicide, and unintentional shooting deaths (Wintemute, 2015).

Those who support firearm ownership typically argue that guns protect hon- est citizens from attacks by criminals. Yet guns are used far more often against non- criminals than against criminals. Furthermore, U.S. crime statistics demonstrate that only a tiny percent of crime victims even try to use a gun in self-defense, and that those who do are no more likely than others to avoid injury (Hemenway and Solnick, 2015).

Although interest in gun control rises sharply after each mass murder (such as the 2016 shooting in which 49 people were killed and 50 injured in a Flor- ida nightclub), this interest has not translated into widespread legislative changes. Those favoring gun control face heavy financial odds because the “gun rights” lobby routinely donates around 10 times more to federal candidates than does the “gun control” lobby (Center for Responsive Politics, 2017).

Motor Vehicles

McGinnis (2015) attributes 1% of all premature deaths to motor vehicle acci- dents (including accidents involving drug but not alcohol use). These deaths are not a necessary by-product of modern life. Rather, they reflect in part a series of decisions regarding the design of automobiles and transportation systems.

Motor vehicles have become considerably safer since 1966 when Congress established the National Highway Traffic Safety Administration to regulate motor vehicle design and oversee highway safety programs. Changes in street and high- way design, greater enforcement of drunk driving laws, and public education cam- paigns against drunk driving have reduced the number of accidents. Meanwhile, mandatory changes in car design, coupled with laws requiring seat belts and child car seats, have increased safety for passengers and drivers.

Unfortunately, automobile manufacturers have continued to oppose in- expensive improvements that could save thousands of lives yearly, such as strengthening bumpers or covering instrument panels with softer materi- als to prevent head injuries. Equally important, legislators and government regulators have continued to exempt vans, multipurpose vehicles, and light trucks—which now account for more than 50% of all noncommercial vehicle sales—from passenger car safety regulations, even though most consumers use these vehicles as family cars.

33T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

Another key reason Americans die so often in motor vehicle accidents is simply that they drive so much. In fact, even though increasing numbers of young people now rely on public transportation or ride-sharing apps rather than driving, overall more people drive more miles than ever before. As a result, even with the increased safety of motor vehicles, per capita rates of injuries and deaths from vehicles barely changed between 1966 and 2013—when they spiked higher as more people bought cell phones and began using them while driving (Leonhardt, 2017; Litman, 2013). To date, legislators have failed to out- law the use of hands-free cell phones (which are almost as dangerous as other cell phones). Similarly, both vehicle and cell phone manufacturers have failed to install available technologies that by default restrict the use of cell phones inside moving vehicles, even though those technologies allow users to override the default settings.

Finally, Americans are particularly at risk from motor vehicle accidents be- cause they have far fewer transportation options than do citizens of other wealthy nations. Through a series of local and federal decisions, public transportation in this country has declined significantly since its apex in the 1920s (Hayden, 2003). Trains and railroad tracks have decayed while federal dollars have subsidized high- way construction and motor vehicle production. Long-distance bus systems run for profit have eliminated money-losing connections to many smaller communi- ties. Meanwhile, cities spend billions for parking facilities, road construction, and road maintenance but offer bus service only to limited locations, during limited hours, and on a limited schedule. Consequently, whereas a French citizen can use publicly subsidized trains or buses to go to any town or city in France on any given day and probably at several different times, an American citizen often has no way to go by public transportation from one town to the next. For example, Phoenix, Arizona, is the sixth largest city in the United States but has no passenger rail service.

Sexual Behavior

McGinnis (2015) attributes 1% of premature deaths to sexual behavior, primarily via hepatitis B, HIV/AIDS, and cervical cancer. The first two are directly trans- mitted through sex, and the last is most often caused by human papillomavirus, a sexually transmitted virus. McGinnis (2015) also includes in this category infant mortality after unplanned and unwanted pregnancies.

No “manufacturer of illness” benefits from convincing people to engage in sexual activity without protecting themselves against disease or pregnancy, but social conditions can encourage such behavior. First, those forced by economic necessity to turn to prostitution to support themselves, whether male or female, often find that they can’t suggest safer sex to clients without losing business or risking violence. Similarly, those whose intimate relationships are not based on mutual respect and equality sometimes find that suggesting safer sex to their ro- mantic partners results in violence or abandonment (Wingood and DiClemente, 1997). Finally, those who have learned to have little hope for the future—a senti- ment particularly common among youths in communities wracked by racism and

34 C H A P T E R 2

poverty—sometimes believe they have little to lose by engaging in unsafe sexual activity (Plotnick, 1992).

Other sexually active individuals, however, do fear sexually transmitted diseases (STDs) and pregnancy but lack knowledge about safer sexual prac- tices or access to birth control. Only half of U.S. states require that schools teach sex education (Guttmacher, 2017a). In addition, half of all states require that abstinence be stressed if sex education is taught, even though research overwhelmingly suggests it doesn’t work (Kohler, Manhart, and Lafferty, 2007). Such education delays individuals’ first sexual intercourse by only around three months while significantly reducing the odds that condoms will be used.

Meanwhile, access to birth control and abortion has declined. Cuts in pub- lic funding for contraceptive services have reduced options for teenagers and low-income women, the groups most at risk for unplanned pregnancies and infant mortality. Similarly, the federal government will pay for abortions for women on Medicaid (the government-funded health insurance program for poor persons) only if the woman’s life is endangered. Meanwhile, cutbacks in government funding for abortions, strict new laws and regulations, and harass- ment or even violence against abortion providers have reduced the number and geographic distribution of abortion providers. Moreover, few medical schools now teach students how to perform abortions, making it the only medical pro- cedure that doctors can refuse to learn. Currently, 39% of U.S. women live in counties without any abortion provider (Allan Guttmacher Institute, 2017b). Other restrictions such as requiring waiting periods or parental consent before abortions also limit access, especially for poor and young women. Yet despite these restrictions, abortion remains common: An estimated one-third of all U.S. women will have an abortion at some time during their lives (Allan Gutt- macher Institute, 2010). As a result, preserving the safety of abortion services is an important health issue.

Illicit Drug Use

Although far less deadly than tobacco or alcohol, illicit drug use (including intentional overuse of drugs initially prescribed for pain relief) nevertheless ranks among the top 10 causes of premature death. Illicit drug use can kill users through overdose, suicide, motor vehicle injury, HIV infection, pneu- monia, hepatitis, and endocarditis (heart infections). In addition, illicit drug use can kill nonusers by contributing to homicide and birth. Similarly, illicit drug use can contribute to dangerous behaviors. “Contemporary Issues: The Opioid Epidemic,” p. 35, addresses the sharp rise in death and disease linked to opioid drugs.

The Impact of Illegality Added to the inherent dangers of illicit drug use are the dangers caused by its illegality. As mentioned earlier, when drug users

35T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

CONTEMPORARY ISSUES

The Opioid Epidemic

Currently, most deaths from drug use in the United States are caused by opioids, including heroin, OxyContin, and Fentanyl. The latter has played an especially large role in deaths because it is 50 times stronger than heroin (National Institute on Drug Abuse, 2016, 2017). Although opioids cause no direct damage to the human body, an overdose can lead to death, usually by suppressing the natural inclination to breathe. Map 2.1 shows the distribution of overdose deaths around the U.S.

Illicit use of opioids has increased steadily since at least 2002 (National Institute on Drug Abuse, 2017). Many individuals began using drugs like Fentanyl and OxyContin on the advice of doctors, who believed manufacturers’ claims that these drugs were less addictive than older opioids—a claim that was quickly disproved. Ironically, African Americans were less affected than others by this trend because they had less access to health care and were more often refused pain medicine by doctors (Hansen and Netherland, 2016).

Over time, many who became addicted to drugs initially prescribed by doctors for pain relief have found that their doctors will no longer fill those prescriptions, whether because the doctors now view them as addicts or because the doctors fear prosecution under new laws designed to prevent overprescription of opioids. As a result, many who started on prescription opioids now use illegal opioids such as heroin.

Fortunately, easily administered nasal sprays of the drug nalaxone are now available that can quickly counteract overdoses of opioids and prevent death. These sprays have been used successfully by police forces and emergency medical providers around the country, and they will soon be available by prescription to individuals as well. Unfortunately, many people oppose their use for fear they will increase addiction.

can’t obtain clean needles legally, they are likely to share needles and thus increase their risks of HIV/AIDS, hepatitis, and other infections. Similarly, users who buy drugs on the street can’t know how powerful the drugs are. For example, individuals who typically inject heroin that is 30% pure can die if they accidentally buy heroin that is 60% pure, thus doubling their usual dosage.

Similarly, individuals who must purchase drugs at the extraordinarily high prices charged by illegal sellers are quickly ground into poverty. Once they no longer can afford proper food, clothing, or shelter, their vulnerability to all sorts of illnesses increases. Moreover, the high prices of illegal drugs can pressure users to engage in crime, including violent crimes that can damage the health of others.

Research consistently shows that prevention and treatment programs are both cheaper and more effective than criminal sanctions in reducing the use and so- cial costs of illegal drugs (Frakt, 2017). Unfortunately, most government funding for drug control goes to the criminal justice system rather than to prevention or treatment.

36 C H A P T E R 2

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37T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

THE HEALTH BELIEF MODEL, HEALTH LIFESTYLES, AND HEALTH “PROJECTS”

It is no secret that tobacco, guns, and sex without condoms can kill. So why do some people engage in behaviors that place their health at risk? Conversely, why do others make maintaining their health an all-consuming project? To address these questions, sociologists turn to the concepts of the health belief model, health lifestyles, and health projects.

The Health Belief Model

Within the health care world, compliance refers to individuals’ willingness to follow medical advice. The most commonly used framework for studying com- pliance to medical advice is the health belief model (Becker, 1974, 1993; Rosenstock, 1966). The model was developed to explain why healthy individuals adopt healthy behaviors. According to the model, four factors affect these deci- sions: Individuals must believe (1) that they are susceptible to a particular health problem, (2) that the problem is serious, (3) that adopting preventive measures will reduce their risks significantly, and (4) that no significant barriers make it difficult for them to adopt those measures. For example, people are most likely to adopt a low-fat diet if they believe that otherwise they will face high risks of heart disease, that heart disease will substantially decrease their life expectancy, that a low-fat diet will substantially reduce their risk of heart disease, and that such a diet won’t be too costly, inconvenient, or unpleasant. In turn, according to the health belief model, these four factors are affected by demographic variables (such as the indi- vidual’s gender and age), psychosocial variables (such as personality characteristics and peer group pressures), structural factors (such as access to knowledge about the problem and contact with those who experience the problem), and external cues to action (such as media campaigns about the problem or doctors’ advice). “Key Concepts: The Health Belief Model,” p. 38, outlines how this model works.

Although this model recognizes that social factors as well as individual psy- chological factors affect health decision making, in practice it is most often used to explain individual choices. In other words, researchers who use this model tend to emphasize agency—individual free will to make choices—over structure—social forces that limit the choices individuals realistically can make (Cockerham, 2005). As a result, such researchers, along with most policy makers, more often promote policies such as educating consumers about the dangers of smoking than policies such as banning smoking in public places. The debate over the relative impor- tance of agency and structure—sometimes referred to as “life choices” versus “life chances”—is at the center of many theoretical discussions within sociology and, even more so, between sociology and other fields such as psychology and medicine.

Health Lifestyles

All human behavior is affected by both agency and structure. No one blindly fol- lows every social rule and expectation. Nor is anyone fully free of socialization,

38 C H A P T E R 2

cultural expectations, and social limitations on what options are truly available. Nevertheless, knowing the social groups that individuals belong to helps us predict their odds of adopting various health behaviors: Lower-class citizens are far more likely than upper-class citizens to smoke, men are far more likely than women to drink heavily, and so on. Consistent patterns such as these led sociologist William Cockerham to propose the health lifestyle theory. This theory acknowledges both agency and structure but emphasizes group rather than individual behaviors. Compared with the health belief model, this new theory offers a more com- prehensive analysis of why healthy behaviors are or are not adopted (see “Key Concepts: Health Lifestyle Theory,” p. 39).

Cockerham (2005:55) defines health lifestyles as “collective patterns of health-related behavior based on [life] choices from options available to people ac- cording to their life chances” (emphasis added). According to this theory, decisions about healthy and unhealthy behavior begin with demographic circumstances, cultural memberships, and living conditions. These factors directly affect individu- als’ life chances, such as whether they have the education needed to avoid physically dangerous jobs. In addition, demographic circumstances, cultural memberships, and living conditions indirectly affect life choices through their effect on socialization and life experiences. Those who grow up with parents who consider all alcohol use immoral, for example, will be less likely to drink as adults than those whose parents considered alcohol to be just another beverage.

At the same time, life choices affect life chances and vice versa. For example, those who choose to drive safely (a life choice) are more likely to avoid injury

The Health Belief Model

People Are Most Likely to Adopt Healthy Behaviors When They:

Example: Adopting Healthy Behaviors Likely

Example: Adopting Healthy Behaviors Unlikely

Believe they are susceptible

40-year-old smoker with chronic bronchitis who believes he is at risk for lung cancer

16-year-old boy who believes he is too healthy and strong to contract an STD

Believe risk is serious Believes lung cancer would be painful and fatal and does not want to leave his young children fatherless

Believes that STDs can all be easily treated

Believe compliance will reduce risk

Believes he can reduce risk by stopping smoking

Doesn’t believe that condoms really prevent sexual diseases

Have no significant barriers to compliance

Friends and family urge him to quit smoking, and he can save money by so doing

Enjoys sexual intercourse more without condoms

KEY CONCEPTS

39T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

(a life chance). Conversely, those who live in poverty (a life chance) may choose to drive fast (a life choice) because doing so is a cheap source of fun and they don’t expect to live long anyway. As this theory suggests, life choices and life chances come together to create habitual dispositions toward health behaviors—rou- tine, almost instinctual ways of thinking about whether certain behaviors are or are not worth adopting. These dispositions are crucial to the health lifestyles adopted by individuals and groups.

Finally, Cockerham notes, not only do dispositions affect health lifestyles, but also health lifestyles affect dispositions. As people’s ways of thinking about behav- iors such as smoking change, so do their behaviors. And as their behaviors change, so do their dispositions.

Health Lifestyle Theory

Demographic circumstances (includes class, age, sex,

ethnicity)

Cultural memberships (includes religious, social, political

groups)

Living conditions (includes housing, food, neighborhood

safety)

Life chances Life choices

Habitual dispositions toward health behaviors

Health lifestyles: pattern of healthy and unhealthy behaviors

Socialization and life experiences

KEY CONCEPTS

SOURCE: Cockerham (2005)

40 C H A P T E R 2

Health Projects

One outgrowth of the health lifestyle currently common among middle- and upper-class Americans is the rise of the “health project.” The idea of a health project draws on the idea of a body project. As originally developed, the latter term referred to the intense focus that many young women now bring to shap- ing their bodies and to the ways that those activities are now considered both important work and central to individual identity (Brumberg, 1997). Similarly, we can speak of a modern health project, which is common among many affluent Americans, that requires individuals to actively protect their health and defines this as important work central to individual identity (Shilling, 2002). This health project reflects both the modern emphasis on appearance and the long-standing American emphasis on the virtues of hard work.

Embedded in the concept of the health project is the idea that good health comes not from God, nature, or genes but from individual hard work. Similarly, the health project is based on the assumption that the body is both unfinished and highly malleable, so individuals can always choose to shape and control it (Dworkin and Wachs, 2009). Conversely, the health project suggests that those who don’t take on this work are “slackers,” less morally worthy than those who do so. For this rea- son, it’s not at all unusual to hear lawyers, businesspeople, and others offhandedly mention their various athletic injuries, not only to elicit sympathy but also to subtly suggest their “moral” worth. These ideas are reinforced by a wide range of media (television shows, magazines, advertisements, and others) that constantly exhort us to work on our diets, “abs,” and cholesterol levels (Dworkin and Wachs, 2009).

SOCIAL STRESS AND SOCIAL NETWORKS

Even among those who smoke, drink, or engage in other risky behaviors, some individuals are more likely to survive to old age than others. And even among those who do everything “right,” some will die earlier than others, even if those others share their genes, physical environment, and living conditions. To under- stand this paradox, sociologists have looked at the concepts of social stress and social networks.

Social Stress

The term stress has three major meanings. First, stress refers to situations that make individuals feel anxious and out of balance. Second, stress refers to the emotions that result from exposure to such situations. Finally, stress refers to the bodily changes that occur in response to these situations and emotions. For example, a fight with a friend is a stress that can produce the emotion of stress and lead to the physical stress of tensed muscles, rapid heartbeats, and heavy breathing. Stress can be either acute (such as the death of a spouse) or chronic (such as long-term loneliness or financial difficulties resulting from a spouse’s death). Importantly, stress is often

41T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

cumulative. An individual’s cumulative stress burden—the sum of acute and chronic stresses that one has experienced—is a powerful predictor of ill health (Thoits, 2010).

Stress is a natural, unavoidable, and sometimes beneficial part of life. Thou- sands of years ago, hunters experienced stress as they anxiously prepared to track wild animals. That emotional stress put physical stress on their bodies, but it also kept their minds focused on their tasks. If, for example, a wild animal suddenly attacked, a hunter might survive because the emotional stress resulted in the physical stress response known as the fight-or-flight syndrome. The same quick heartbeat we experience while fighting with a friend could have saved the life of someone fighting a lion, because these physical changes help our bodies produce additional energy and oxygen and hence respond more quickly and effectively to threats.

Although the fight-or-flight response works well for dealing with sudden threats such as rampaging lions, speeding cars, and last-minute quizzes, it is far less useful for dealing with less acute but chronic stresses such as poverty or an ill child. Each time the body responds to a threat, it uses muscles, energy, and other resources. Over the long run, such stresses can wear out the body and lead to heart disease, diabetes, and other illnesses as well as encourage individuals to adopt unhealthy behaviors such as smoking tobacco or having sex without condoms (Avison and Thomas, 2010; Sapolsky, 2004).

The impact of the stress, however, depends heavily on the nature of the stress: Studying for a short quiz, for example, is less stressful than failing a final exam. Stress is particularly likely to affect health when it stems from a “fateful loss,” is physically exhausting, or disrupts social support systems (Avison and Thomas, 2010). For example, an accountant who loses his job, has to work exhausting double shifts as a cashier to replace his lost income, and no longer has the time or money to hang out with friends will likely experience dangerous levels of stress. As this suggests, chronic stress is especially important, diminishing individuals’ abilities to ward off infections, depression, and other health problems (Avison and Thomas, 2010; House, 2002; Siegrist, 2010).

But even when exposed to similar levels of stress, some individuals are more susceptible to illness than others. The likelihood that stress will affect health de- pends in part on how individuals appraise the stress and how they cope with the stress. In turn, both responses to stress depend on the social resources individuals bring to the situation (Avison and Thomas, 2010). For example, flunking an exam is far more stressful for a student who risks losing his scholarship than for other students. It will also be less stressful if the student copes by quickly seeking out a good tutor rather than by getting high or blaming her grade on an incompetent teacher. But the student’s ability to respond effectively will also be determined in part by her social resources: Has she learned from a young age to turn to alcohol as a coping measure? Do her friends encourage her to continue trying or to drop out? Does she have the funds needed to hire a tutor and the contacts needed to find a good one? The answers to these questions will affect whether this acute stress leads to chronic stress and, in the end, to ill health.

42 C H A P T E R 2

Gender, Race, Class, and Social Stress

As this suggests, the likelihood of experiencing traumatic social stress depends in part on one’s position in society (a topic described in more detail in Chapter 3). Men, for example, more often experience traumatic physical injuries on the job, but women more often experience chronic stress from holding jobs while raising children. Women, however, typically have a greater cumulative stress burden, which may explain their higher rates of disability (Thoits, 2010).

Minorities, too, have higher cumulative stress burdens and resulting ill health. That stress burden includes the emotional burden of living with racist discrimi- nation and prejudice (Thoits, 2010). In addition, discrimination and prejudice in- crease the odds that such individuals will be poor and (even if not poor) will live in neighborhoods characterized by poverty, neglect, crime, and pollution—all factors that can contribute to stress, illness, and injury. Immigrants, too, may face similar problems, especially if they belong to a stigmatized minority or have entered the country illegally.

Similarly, individuals with lower incomes and education levels experience more stress overall than do more affluent, better-educated individuals (Thoits, 2010). Poverty exposes individuals to a wide range of stresses, including hunger, worries over bills, poor living conditions, and physically exhausting work. More- over, poor people are far more likely to hold jobs that combine high demand—bosses constantly pressuring workers to produce more and faster—with low control— bosses who offer workers few choices, even over seemingly small issues such as when to take bathroom breaks. Such working conditions are particularly likely to result in dangerous levels of stress (Siegrist, 2010).

Social Networks

Whereas social stress can lead to ill health regardless of individuals’ behaviors, social networks can either increase or worsen health (Smith and Christakis, 2008; Thoits, 2010). Social networks are the webs of social relationships that link peo- ple to each other, whether as friends, relatives, acquaintances, or coworkers or in some other way. Because most social networks are relatively homogeneous— primarily linking people who share ethnicity, social class status, personality traits, political views, and so on—they tend to amplify the advantages and disadvantages that different social groups already experience.

Social networks affect health in various ways. Among other things, social net- works offer individuals access to social support, financial assistance, health infor- mation, and other forms of aid that can help them stay (or become) healthy. In general, people with smaller social networks, only weak ties to others in their networks, or networks that tie them to poor and marginalized individuals will be less able to avoid or recover from illness, injury, or substance abuse (Smith and Christakis, 2008).

Networks also affect health by exposing individuals to specific social norms. If, for example, several individuals in a social network smoke tobacco or engage in violent fights, others who join that network may conclude that those behaviors are

43T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

acceptable and therefore start doing the same (Bond and Bushman, 2017; Kaplan et al., 2001). Conversely, joining new social networks can reduce individuals’ health risks when, for example, a student from a poor family transfers to a middle-class school and gains access to a new social group that frowns on tobacco use or encourages athletic activity.

IMPLICATIONS

Recent years have seen an increasing tendency to blame individuals for their own health problems (a topic discussed further in Chapter 5). As we have seen, how- ever, patterns of disease stem from social conditions as much as if not more than from individual behaviors or biological characteristics. As Marshall Becker, a so- ciologist and one of the researchers who has done the most to help elucidate why people engage in health-endangering activities, writes:

I would argue, first, that health habits are acquired within social groups (i.e., family, peers, the subculture); they are often supported by powerful elements in the general society (e.g., advertising); and they have proven to be extremely difficult to change. Second, for most people, personal behavior is not the primary determinant of health status and it won’t be very effective to intervene at the individual level without concomitant attempts to alter the broader economic, political, cultural, and structural components of society that act to encourage, produce, and support poor health. (1993:4)

In sum, to improve the public’s health we must look beyond individual behav- ior and personal troubles to structural issues and, in C. Wright Mills’s terms, public issues. Such a change in focus will enable us to address the underlying causes of illness and to ensure that national health policy is driven by concern for the public rather than concern for special interests.

SUMMARY

1. Epidemiology refers to the distribution of illness in a population. Epidemiologists rely on concepts such as life expectancy, mortality and morbidity rates, incidence, and prevalence. Incidence refers to the number of new occurrences of an event (disease, births, deaths, etc.) within a specified population during a specified period. Prevalence refers to the total of both new cases existing in a population at a given time and older cases that are still surviving.

2. Infectious illnesses again have become a growing source of illness and death in the Western world, partly because of the overuse of antibiotics, changing physical environments, and globalization. HIV/AIDS is an example of the resurgence of infectious diseases.

44 C H A P T E R 2

3. Sociologists suggest that to improve the population’s health, we should look beyond individual behavioral choices to the manufacturers of illness: groups that promote illness-causing behaviors and social conditions.

4. Research suggests that 10 factors account for at least 50% of all preventable deaths. In order of importance, these are diet and activity patterns, tobacco, medical errors, alcohol, bacteria and viruses, toxic agents, firearms, motor vehicles, sexual behavior, and illicit drugs. The dangers posed by toxic agents reflect life in a risk society, one in which dangerous modern technologies and the risks they pose have become commonplace and accepted.

5. The health belief model predicts that individuals will be most likely to adopt healthy behaviors if they believe they are susceptible to a problem, believe the problem is serious, believe changing their behaviors will decrease the risk, and face no significant barriers to so doing. Health lifestyle theory offers a more comprehensive analysis of why healthy behaviors are adopted by emphasizing social structure as well as personal agency.

6. Many middle- and upper-class Americans now focus intently on protecting their health and consider such work—known as a health project—central to their identity.

7. Social stress has three meanings: (a) situations that make individuals feel anxious and out of balance, (b) the emotions that result from exposure to such situations, and (c) the bodily changes that occur in response to these situations and emotions. Social stress, especially when chronic, can cause physical and mental health problems.

8. The likelihood that stress will affect health depends on how individuals appraise the stress and on how they cope with the stress, both of which depend on individuals’ social resources. It also depends on individuals’ position in society.

9. Social networks are the webs of social relationships that link people to each other. Health risks are greatest among those with small social networks, only weak ties to others in their networks, or networks that tie them to poor, marginalized individuals.

REVIEW QUESTIONS

1. What is the difference between morbidity and mortality and between incidence and prevalence?

2. What factors have caused the recent increases in infectious diseases?

3. How is globalization affecting rates of disease?

4. How have the “manufacturers of illness” increased deaths caused by tobacco? By alcohol? By toxic agents? By diet?

5. How have social forces and political decisions increased deaths caused by sexual behavior? By illegal drugs?

45T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

6. What system-level factors help to explain medical errors? How does medical culture keep doctors from identifying medical errors?

7. Think of someone you know who smokes or engages in another unhealthy behavior. Use the health belief model to explain what would have to change for him or her to change this behavior. Then use health lifestyle theory to explain why you do or don’t have a generally healthy lifestyle.

8. What are the benefits of the modern health project? What problems does the health project cause for those who adopt it? For those who don’t?

9. How does social stress affect health? How do gender, race, and class affect average levels of social stress?

10. How can social networks reduce individuals’ health risks? How can they increase those risks?

CRITICAL THINKING QUESTIONS

1. What are the political consequences of focusing on how social factors cause illness rather than focusing on biological factors?

2. This text identifies tobacco and alcohol as two of the most important underlying causes of premature death in the United States. What social policies would help stop the manufacture of illnesses by alcohol and tobacco in the first place? (Be sure you do not confuse this with policies that would stop individuals from using these substances or would treat the health consequences of using these substances.)

3. Think of something you do (or believe you should do) to protect your health such as wearing seat belts, wearing bike helmets, drinking alcohol only moderately, eating fruits and vegetables, or flossing your teeth. Use the health belief model to explain why you do or don’t take these precautions. (If you can’t think of an example from your own experience, use an example from a friend or relative’s life.)

4. First, use each of the four elements of the health belief model to explain why so few Americans eat five portions of fruits and vegetables daily. Second, explain why policy makers who want to improve Americans’ diets need to additionally pay attention to one element from health lifestyle theory (you can choose any element).

5. Think of someone you know whose health is poor. How might social stress have worsened his or her health? How might this person’s health problems have increased his or her stress?

6. Think of a social network you belong to (such as a fraternity, religious organization, athletic team), and discuss the effect of that social network on your health and health behaviors.

C H A P T E R

The Social Distribution of

Illness in the United States

M ar

ka /A

la m

y St

oc k

Ph ot

47T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand how social class affects health and illness. ● Compare the major health issues faced by different ethnic groups in the

United States. ● Analyze the combined impact of poverty and ethnicity on health. ● Assess the impact of age on health and illness. ● Describe how sex and gender can affect health and illness. ● Evaluate how social capital can affect health and illness.

Meat and poultry processing is one of the most dangerous jobs in the United States, with injury and death rates several times higher than in other occupations. These are jobs that only the poor will take, and these are increasingly jobs filled only by undoc- umented Hispanic immigrants, many of whom barely speak English. One worker interviewed by observers from the nonprofit Human Rights Watch (2005) said:

The [meat processing] line is so fast there is no time to sharpen the knife. The knife gets dull and you have to cut harder. That’s when it really starts to hurt, and that’s when you cut yourself. I cut my hand at the end of my shift, around 10:30 at night. . . . I went to the clinic the next day at 11:00 a.m. They gave me stitches and told me to come back at 2:30 before the start of my shift to check on the stitches. They told me to go back to work at 3:00. I never stopped working. (Human Rights Watch, 2005:35)

Another man, with fingers swollen and bent nearly into claws, said:

I hung the live birds on the line. Grab, reach, lift, jerk. Without stopping for hours every day. Only young, strong guys can do it. But after a time, you see what happens. Your arms stick out and your hands are frozen. Look at me now. I’m twenty-two years old, and I feel like an old man. (Human Rights Watch, 2005:36)

And a woman said:

I pull ribs with my fingers on the packing ribs line. My fingers and nails are in constant pain because the company won’t give us hooks to pull the ribs, and they won’t let us bring our own hooks. We need hooks to pull the meat more easily and to avoid injuries. But they say that meat gets lost using hooks, and using fingers pulls more meat, so no hooks. (Human Rights Watch, 2005:45)

Complaints from workers about conditions at processing plants are few be- cause those who complain are usually fired or reported to immigration author- ities and then deported. And medical care is usually unavailable except from

48 C H A P T E R 3

company doctors whose jobs depend on minimizing rather than treating workers’ health complaints.

Although the conditions faced by meat and poultry workers are extreme, they illustrate how social class and ethnicity can leave individuals vulnerable to illness, injury, and death. In this chapter, we explore how these factors as well as age, sex, and gender result in an unequal distribution of health and illness across the population.

SOCIAL CLASS

Overview

Social class refers to individuals’ position within a society’s economic and social hierarchy. Most often, it is measured by looking at individuals’ education, income, or occupational status, with some researchers using only one of these indicators and some combining two or more. Other researchers have argued for additional measures, with wealth perhaps the most important. Wealth refers to the total financial resources an individual or family owns, including cash, houses, pensions, and investments, among other things. For example, imagine two students who work together at Starbucks, earning the same income each week. Now imagine that one girl’s parents can pay her tuition each year from their savings, while the other’s parents took out a second mortgage on their house but could still pay only could pay a quarter of their daughter’s tuition. These students have the same income, education, and occupation but some would say that they differ in social class because they differ in family wealth.

The link between social class and ill health is strong and consistent (Adler and Rehkopf, 2008; Hadler, 2008; Lahelma, 2010). For example, the food, shelter, and clothing available to poor Americans 200 years ago differed greatly from that available to poor Americans now, which in turn differs greatly from that available to poor Brazilians these days. Even so, in each place and era and for almost all illnesses, poor persons experience more illness than wealthier persons do. Because of this especially strong link between social class and health across time, place, and disease, some sociologists label social class a “fundamental cause” of disease (Link and Phelan, 2010; Phelan et al., 2004).

Fundamental-cause theory argues that even though the common diseases and their causes may change over time and place, in each situation those with greater access to resources will experience better health because those resources help protect their health. For example, Link and Phelan write:

[A] person with many resources can afford to live in a high-status neighborhood where . . . enormous clout is exerted to ensure that crime, noise, violence, pollution, traffic, and vermin have been kept at a minimum and the best health-care facilities, parks, playgrounds, and food stores are conveniently located nearby. Once a person has used [social class-based] resources to locate in an advantaged neighborhood, a host of health-enhancing circumstances comes along as a package deal. (2010:6)

49T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

In such circumstances, wealthier individuals can increase their odds of good health without even trying.

The impact of social class on health is obvious: Around the world, in every age group and racial or ethnic group, those with higher social class status have lower rates of morbidity and mortality (Adler and Rehkopf, 2008; Lahelma, 2010; Marmot, 2002, 2004). The relationship between social class and health holds true for all major and most minor causes of death and illness, regardless of how researchers measure social class (Picket and Wilkinson, 2015; Wilkinson, 1996, 2005). For example, in the United States heart disease occurs three times as often and arthritis twice as often among low-income persons compared to more affluent persons. Moreover, these health differences appear across the en- tire income scale, with each group on the social class ladder having better health than the group just below it (Marmot, 2004; Wilkinson, 1996, 2005). And when researchers control for all known individual risk factors (such as obesity and smoking), the impact of social class on health declines only slightly (Wilkinson, 1996, 2005).

That impact begins at birth, with infant mortality significantly higher among the poor (Matthews and MacDorman, 2010; Olson et al., 2010). The evidence linking social class to health, then, is extremely strong. However, some sociologists (most notably Richard Wilkinson) have argued that income inequality—the gap in income between a nation’s poorest and wealthiest—rather than income itself, may best explain why some nations are healthier overall than others (Wilkinson, 1996, 2005). These theorists point, for example, to data showing that as income inequality declined in the United States from around 1960 to 1980, life expec- tancy rose among all social classes (Ezzati et al., 2008; Krieger et al., 2008). Other researchers, however, point to data suggesting that income alone affects health more than does income inequality (Mechanic, 2006). For example, since 1980, income inequality has soared in the United States, but life expectancy fell only for poorer Americans. This suggests that income affects health more than does in- come inequality (Ezzati et al., 2008; Krieger et al., 2008). More research is clearly needed to tease out how and whether income inequality affects health (Truesdale and Jencks, 2016).

The Sources of Class Differences in Health

How can we explain the link between poverty and illness? One explanation is that illness causes poverty: As people become disabled or ill, their ability to earn a living or attract an employed spouse declines, and they fall to a lower social status than that of their parents. This explanation is known as social drift theory. Studies that have tracked Americans over time, however, have found that social drift explains only a small proportion of illness among the poor (Adler and Rehkopf, 2008; Marmot, 2002, 2004). Instead, and far more often, poverty causes illness.

But how does poverty cause illness? As Chapter 2 discussed, social stress is a major cause of illness. Thus, one important reason why poorer persons suffer worse health than do wealthier persons is because poorer persons experience more

50 C H A P T E R 3

stress and have less control over that stress (Adler and Rehkopf, 2008; Phelan et al., 2004). For example, factory workers must keep pace with the production line but can’t control the speed of the line and can’t even choose when to take bathroom breaks. Numerous studies have found that workers who face high demands with little control over work conditions are particularly likely to experience stress that results in both physical and psychological illness (Marmot, 2004; North et al., 1996; Wilkinson, 2005).

As this suggests, stress amplifies the myriad health risks embedded in everyday aspects of lower-class life. First, the work available to poorly educated lower-class persons—when they can find it—can cause ill health or even death. A coal miner, for example, is considerably more likely than a mine owner to die from acciden- tal injuries or lung disease caused by coal dust. In addition, lower-status workers typically experience both demanding work conditions and low control over those conditions.

Second, environmental conditions place poor people at risk of illness and death. Chemical, air, and noise pollution all occur more often in poor neighbor- hoods than in wealthier neighborhoods because the cheap rents in neighborhoods blighted by pollution attract poor people and because poor people lack the money, votes, and social influence needed to keep polluting industries, waste dumps, and freeways out of their neighborhoods (Brulle and Pellow, 2006; Bullard, Warren, and Johnson, 2001). Such pollution can foster cancer, leukemia, high blood pressure, and other health problems as well as emotional stress.

Similarly, climate change is most likely to affect the health of poor people (McGill, 2016). Both extreme heat and extreme cold take their greatest toll on individuals who are homeless or who cannot afford to properly heat or cool their homes. In addition, rising temperatures make it easier for mosquitoes to breed, especially in poor neighborhoods where city health departments rarely spend money on mosquito control. And once mosquitoes appear, those who lack air conditioning and thus leave their windows open at night—when mosquitoes most often bite—are most at risk.

Third, inadequate, overcrowded, and unsafe housing increases the risk of in- juries, infections, and illnesses, including lead poisoning when children eat peeling paint, gas poisoning when families rely on ovens for heat, and asthma triggered by cockroach droppings, rodent urine, and mold (Brown et al., 2003; Krieger and Higgins, 2002).

Fourth, the food poor children eat—or don’t eat—affects their lifetime risk of illness. Federal researchers currently estimate that more than 20% of U.S. chil- dren sometimes go hungry (Seligman and Schillinger, 2010). These children get significantly more colds each year and are significantly more likely to experience poor health, lack sufficient iron, experience chronic headaches or stomachaches, or have a disability (Seligman and Schillinger, 2010). They are also more likely to miss school and to do poorly in school, thus increasing their chances—and their children’s chances—of remaining poor.

The foods available to poor children and adults also increase their health risks (Seligman and Schillinger, 2010). This diet relies heavily on fatty or sweet foods that satisfy hunger and provide energy inexpensively but offer little or no

51T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

nutrition. As Chapter 2 discusses, such a diet may lead to heart disease, diabetes, and other illnesses.

Lack of access to health care also fosters illness and disability among the poor, although its effect is relatively weak (Adler and Rehkopf, 2008; Williams et al., 2010). Despite recent health care reforms (discussed in Chapter 8), many Ameri- cans still lack health insurance. Others find it difficult to obtain health care because they can’t afford transportation to the doctor, time off from work to visit a doctor, or drugs or services not covered by their insurance. Even when poor or near poor people have health insurance, they are more than twice as likely as other insured adults to forgo needed medical care (Morbidity and Mortality Weekly Report, 2010). In these circumstances, small health problems can quickly mushroom, as when an unfilled cavity leads to a deadly brain infection. The prestigious, federally run Institute of Medicine (2002) estimates that undertreatment and low-quality treat- ment leave uninsured Americans 25% more likely than other Americans to die in any given year.

All these issues are pulled together by what is known as cumulative inequal- ity theory (Ferraro and Shippee, 2009; Goosby, 2013). This theory argues that inequality primarily results from social systems, rather than individual choices, and that it causes health problems that accumulate over the lifetime. This theory helps to further explain why those who grow up poor are more likely than others to be ill, disabled, or dead before they turn 60. So, for example, if a poor child who lives in a rural area breaks a bone in her arm, her parents might try setting it on their own because they can’t afford to pay a doctor, can’t afford the gas to drive to a doctor, or fear they will lose their job if they take time off to go to a doctor, especially if the only feasible care is at a public clinic where they might have to wait for hours. If the wound becomes infected or the bone doesn’t heal straight, the child might be left with chronic pain. That pain might make it harder for her to focus on her schoolwork and therefore less likely to finish high school, let alone college, especially if her parents need her to be earning a living and her teachers and guidance counselors assume she isn’t “college material.” If the only work she can find is cleaning houses or taking care of a sick elderly person, then the physical labor may worsen her pain and lead to depression. She might at that point con- clude that her best options are taking antidepressants, using prescription narcotics to dull her pain, and smoking cigarettes to increase her energy, all of which can bring further health complications. And throughout all of this, it’s likely that she has lived in low-quality housing with limited access to healthy foods. All of these problems add to her cumulative stress burden, which, as Chapter 2 described, can wear out the body, including its muscles and immune system. Thus, inequality and its health effects accumulate over a lifetime.

However, cumulative inequality theory also argues that these consequences are not set in stone. Although those who grow up poor have fewer ways to pro- tect their health and more cumulative exposure to health risks and stresses, there are ways to make a difference. The theory recognizes that individuals sometimes find the means to make healthier choices on their own, but if also suggests that broader social change will be needed to truly break the cycle of cumulative inequality.

52 C H A P T E R 3

RACE AND ETHNICITY

Race is a social construction with almost no biological basis. Research on the human genome has found almost zero support for the concept of race: All humans share virtually all the same genes (Epstein, 2007). Moreover, when researchers sort individuals according to their genetic variations, the resulting categories don’t match existing racial categories (Williams et al., 2010).

The social rules for identifying individuals’ race also suggest that the term has little meaning. For example, although these days everyone considers Irish people to be white, a century ago that was not the case (Jacobson, 1998). Similarly, most Americans consider individuals to be nonwhite if they have any known African ancestors even if most of their ancestors were European. For this reason, from this point on this textbook uses the term ethnicity, which suggests cultural rather than bio- logical differences, rather than the term race.

Although social class explains many observed health differences among ethnic groups, ethnicity nevertheless is an important and independent factor in predicting health status (Bradby and Nazroo, 2010). In this section, we look at health and ill- ness among African Americans (13% of the U.S. population), Hispanic Americans (18%), Asian Americans (6%), and Native Americans (1.0%). As Figure 3.1 shows,

FIGURE 3.1 Life Expectancy by Ethnicity and Sex

Males Females

100

Ethnicity

L if

e E

xp ec

ta n

Hisp an

W hit

e Non

-H isp

an ic

Afri ca

n A m

er ica

Non -H

isp an

Nat ive

A m

er ica

Asia n A

m er

ica ns

Hisp an

W hit

e Non

-H isp

an ic

Afri ca

n A m

er ica

Non -H

isp an

Nat ive

A m

er ica

Asia n A

m er

ica ns

All r ac

*Living on or near tribal lands. Data by sex not available.

SOURCE: Arias, Xu, and Jim (2014); National Center for Health Statistics (2017a)

53T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

life expectancy is shortest among Native Americans (living on or near tribal lands) and longest among Asian Americans. The remainder of this section explores in more detail some reasons for these and other ethnic differences in health.

African Americans

The impact of ethnicity on health stands out vividly when we look at infant mortality (National Center for Health Statistics, 2017a; Population Reference Bureau, 2018)). Not only is infant mortality twice as common among African Americans than among whites, but also as Table 3.1 shows, it is also more common among African Americans than among citizens of countries such as Turkey, Romania, and Costa Rica.

As we have seen, poverty is a major cause of infant mortality. Around two- thirds of African American children are either poor or near poor (Jiang, Granja, and Koball, 2017), which definitely helps explain high rates of African American infant mortality. However, even African American infants born to middle- and upper-class families are more likely to die than are white infants.

The same holds true for other health problems: At all income levels, African Americans have higher mortality and morbidity rates than do whites (Williams et al., 2010). One explanation for this is racism. First, research consistently shows that the experience of racial discrimination is highly stressful and affects both

Infant Mortality Rates in Different Nations and U.S. Ethnic GroupsaTABLE 3.1

Location Rate per

1000 Births Location Rate per

1000 Births

Japan 1.9 U.S. white non-Hispanic 4.9

Singapore 2.4 Iran 5.0

Sweden 2.5 U.S. Hispanic 5.0

Spain 2.6 United States, all births 5.8

Czech Republic 2.8 Chile 7.3

Italy 3.0 Romania 7.3

Austria 3.1 U.S. Native Americanb 7.7

Portugal 3.2 Costa Rica 7.9

Germany 3.3 Turkey 10.0

U.S. Asian or Pacific Islander

3.7 U.S. African American, non-Hispanic

10.9

Greece 4.0 Kosovo 12.0

Canada 4.3 Brazil 14.0

Cuba 4.3 Mexico 18.0

aBy mother’s ethnicity within the United States. bAnywhere in the United States, not only near tribal lands.

SOURCE: Population Reference Bureau (2018); National Center for Health Statistics (2017a)

54 C H A P T E R 3

physical and mental health (Bradby and Nazroo, 2010; Schnittker and McLeod, 2005; Williams et al., 2010). If, for example, pregnant women experience these stresses, they may be more likely to give birth prematurely. Second, racial discrimina- tion by landlords, realtors, or mortgage bankers can leave even middle-class African Americans unable to obtain decent housing in neighborhoods free from pollution and violence (Williams and Jackson, 2005; Williams et al., 2010). Other middle-class African Americans choose to live in poorer, segregated neighborhoods rather than face the daily hostility—or simply social discomfort—of white neighbors. Conse- quently, more-affluent African Americans sometimes live in conditions similar to those experienced by poorer African Americans, thus placing themselves and their families at risk. Finally, racial bias clearly helps explain why Hispanics are twice as likely and African Americans are three times as likely as whites to die during encounters with police, prison guards, and other legal authorities (Buehler, 2017).

Health disparities between African Americans and whites don’t end in in- fancy. Although ethnic gaps in life expectancy have declined, white, non-Hispanic women still live an average of 3 years longer than do their African American coun- terparts, and white, non-Hispanic men live 4.3 years longer (Figure 3.1).

Table 3.2 shows the top causes of death for each major ethnic group in the United States. Given their link to aging, it’s not surprising that heart disease and

Top Causes of Death by EthnicityTABLE 3.2

Non-Hispanic Whites

Non-Hispanic African Americans

Hispanic Americans

Asian Americans

Native Americans

Heart disease Heart disease Cancer Cancer Heart disease

Cancer Cancer Heart disease Heart disease Cancer

Chronic lower respiratory diseases

Stroke Accidents Stroke Accidents

Accidents Accidents Stroke Accidents Diabetes

Stroke Diabetes Diabetes Diabetes Chronic liver disease

Alzheimer’s disease

Chronic lower respiratory diseases

Alzheimer’s Alzheimer’s Chronic lower respiratory diseases

Diabetes Homicide Chronic liver disease

Influenza and pneumonia

Stroke

Influenza and pneumonia

Kidney disease Chronic lower respiratory diseases

Chronic lower respiratory diseases

Suicide

Suicide Alzheimer’s Kidney disease Kidney disease

Kidney disease

Kidney disease Septicemia Influenza and pneumonia

Suicide Influenza and pneumonia

SOURCE: National Center for Health Statistics (2017a)

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cancer are the top two causes for each group. For the remaining causes of death, however, the impact of social conditions is obvious. As noted previously, African Americans are disproportionately likely to be killed by police and other legal author- ities. Many other homicides among African Americans are linked to poverty and the despair that it brings (Heron, 2013). Poverty is also an underlying cause of diabetes (as Chapter 2 described). In turn, diabetes can lead to deaths from kidney disease.

Yet kidney disease need not kill if individuals can receive transplanted kidneys. However, African Americans are significantly less likely than whites to receive transplants. Doctors less often refer African Americans to transplant programs, less often put African Americans on wait lists for donated kidneys, and more often reject African Americans as transplant patients because they lack transportation to hospitals and aftercare facilities (Epstein et al., 2000; Malek et al., 2011). In late 2014, however, U.S. organ transplantation centers adopted a new system in which people receive transplants based in part on how long they have been on dialysis rather than how long they have been on a waiting list. Early data suggest that the new system has increased African Americans’ access to transplants (United Net- work for Organ Sharing, 2016).

Recently, attention has been brought to one other factor that helps explain high rates of disease and death among African Americans: mass incarceration. That issue is addressed in “Contemporary Issues: Mass Incarceration and Public Health,” p. 55.

CONTEMPORARY ISSUES

Mass Incarceration and Public Health

Since the 1960s, the rate of incarceration in the United States has increased fivefold (Cloud, 2014; Massoglia and Pridemore, 2015). As a result, a higher percentage of Americans are imprisoned than are citizens of any other country. African Americans and, to a lesser extent, Hispanics have been especially affected by this trend because they are far more likely than whites to be imprisoned unfairly and to receive unduly harsh sentences (Cloud, 2014; Massoglia and Pridemore, 2015).

Unfortunately, prisons are a perfect environment for breeding disease (Cloud, 2014; Massoglia and Pridemore, 2015). Most who enter prison come from poor communities where infectious diseases such as hepatitis, HIV disease, and tuberculosis are common. These diseases spread easily in overcrowded, unsanitary, prisons, where access to proper health care (let alone condoms) is rare. In addition, the stresses of prison life—including overcrowding, loss of privacy, incessant noise, constant threats of violence, and, especially, the use of solitary confinement—foster both mental illness and substance abuse.

Mass incarceration affects the health not only of prisoners but also of their families and communities (Cloud, 2014; Massoglia and Pridemore, 2015). Diseases contracted in prison can easily spread to others after prisoners are released (Johnson and Raphael, 2009). In addition, the stress of having a family member in prison increases wives’ and girlfriends’ risk of heart attacks, strokes, obesity, and poor overall health and increases children’s risk of depression, obesity, substance abuse, and poor overall health. For these and other reasons, many advocates have called for better health care and living conditions in prisons, better services for prisoners’ families, and an end to the policies that resulted in mass incarceration.

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Hispanic Americans

Like African Americans, Hispanic Americans experience an array of diseases linked to poverty and despair, including fatal accidents, diabetes, and chronic liver disease (usually caused by alcohol abuse). Hispanic Americans are twice as likely as non-Hispanic whites to live in poverty and are less than half as likely to have com- pleted college (Jiang, Granja, and Koball, 2017; National Center for Health Sta- tistics, 2017a). Hispanics are also twice as likely as whites to lack health insurance and almost twice as likely to have no usual source of health care (National Center for Health Statistics, 2017a). In addition, cultural and language barriers as well as discrimination can make it difficult for Hispanics to take advantage of health care resources even when they can afford them.

That said, recent research using data from a wide variety of sources suggests that compared with white non-Hispanics, Hispanics enjoy comparable rates of infant mortality and longer life expectancies (see Figure 3.1 and Table 3.1). This surprising finding is known as the Hispanic paradox. The three most com- mon explanations for this paradox are migration effects, cultural differences, and problems with the data (Arias, 2010). First, some researchers argue that Hispanic Americans have unusually good health because only the healthy migrate and be- cause migrants who fall ill often return home (Palloni and Arias, 2004). Second, some researchers argue that strong social networks—both within immigrant com- munities and within Hispanic families—protect Hispanic Americans from disease. This hypothesis is supported by data suggesting that the Hispanic health advantage declines with each generation after immigration (Williams and Sternthal, 2010). Conversely, other researchers argue that Hispanic Americans only appear to be healthier than white non-Hispanics because the former are often inaccurately identified as the latter on death certificates (Smith and Bradshaw, 2006). Currently, data are insufficient to fully support any of these three explanations (Arias, 2010).

At any rate, health status varies enormously among Hispanic Americans. Mi- grant farmworkers face especially high risks (Azevedo and Bogue, 2001; Green- house, 2001; National Center For Farmworker Health, 2015). Farmwork is physically hazardous, with long days of repetitive stooping and bending, heavy lifting, and exposure to toxic pesticides. Access to clean water and sanitary toilets is often limited, and workers are routinely exposed to extreme heat and cold. Living conditions for migrant workers are often poor, with many individuals crowded together in rooms that are poorly heated or cooled and lack sufficient water and toilets. In addition, low wages make it difficult for farmworkers to purchase nutri- tious foods. Finally, lack of transportation, cultural differences, and communication problems make it difficult for laborers and their families to obtain good health care. As a result, life expectancy is substantially reduced among migrant workers and their families, and chronic health problems, miscarriages, infant mortality, and infectious diseases (including tuberculosis, typhoid, and hepatitis) are several times more common than among the rest of the population (Gwyther and Jenkins, 1998; Sandhaus, 1998).

Immigrants from the poorer countries of Central America, too, are especially at risk, whether farmworkers or not. Because these migrants must cross more

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than 2000 miles plus at least two national borders to reach the United States, immigration from Central America is more dangerous and expensive than it is from Mexico. As a result, undocumented Central Americans are more likely than undocumented Mexicans to stay in low-paying, dangerous occupations such as trimming palm trees or roofing because they especially fear the scrutiny and po- tential for deportation that might accompany the search for new jobs.

Native Americans

As is true with any ethnic group, Native Americans are highly diverse. Native Americans in the United States belong to more than 500 different tribes, each with a distinct language and culture. Around 20% live in rural areas, 20% on res- ervations or other trust lands, and 60% in suburbs or cities (Office of Minority Health, 2014).

Life expectancy among Native Americans has increased steadily since the 1950s. However, it is still considerably lower than among other Americans, espe- cially when we look only at those who live on or near tribal lands (Arias, Xu, and Jim, 2014). (Statistics that include individuals who live away from tribal lands can be misleading because many who identify as Native American have few genetic or cultural ties to Native American peoples.) Similarly, Native Americans are con- siderably more likely than other Americans to live with disabilities and to report unmet health care needs (Barnes et al., 2010).

Infant mortality is a particularly crucial marker of the health problems faced by Native Americans. Compared to non-Hispanic whites, rates of infant mortality are 60% higher among Native Americans overall (see Table 3.1) and 240% higher among those living on South Dakota’s large and exceptionally poor Pine Ridge Reservation (Indianz.com, 2012).

These differences in infant mortality grow even starker when we separate neonatal infant mortality (deaths occurring during the first 27 days after birth) from postneonatal infant mortality (deaths occurring between 28 days and 11 months after birth). Neonatal infant mortality rates are essentially the same among Native Americans and whites, but postneonatal infant mortality is more than twice as high among Native Americans (Indian Health Service, 2014). Most postneo- natal deaths stem from poverty, malnutrition, maternal tobacco use, poor living conditions, and lack of health care for ill infants (Tomashek et al., 2006).

For Native Americans who survive past infancy, heavy alcohol use stands out as an especially serious health risk (see Table 3.2). Although alcohol-related deaths among Native Americans have decreased in recent years, deaths from liver disease, suicide, and accidents (often caused by alcohol use) remain strikingly common.

Asian Americans

Overall, Asian Americans enjoy far better health than do other American minority groups (see Figure 3.1). The largest Asian American groups (Chinese, Japanese, and Filipino) have life expectancies and infant mortality rates equal or superior to those of white Americans.

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These statistics, however, tell only part of the story. Since 1975, a substantial portion of Asian immigration has come from the war-torn countries of Southeast Asia. These immigrants typically have far lower income and education levels than those of established Asian Americans. In addition to having the health problems that always accompany poverty, they may experience unavoidable dietary changes, culture shock, tropical diseases for which diagnosis and treatment can prove elu- sive, and the long-lasting traumas of warfare and refugee life.

In addition, Southeast Asians living in the United States typically have less access to health care than do other Asian Americans (Association of Asian Pacific Community Health Organizations, 2008). Rates of health insurance coverage are low, and even those who have insurance sometimes find that linguistic or cultural barriers make it difficult to communicate with health care workers or obtain quality health care. As a result, Southeast Asians are less likely than are other Amer- icans to use Western health care (although some continue to use traditional Asian healers and therapies).

Writer Anne Fadiman poignantly describes the communication barriers be- tween new immigrants and their doctors and the problems these barriers create for both groups in her prize-winning book The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures (1997). Fadiman describes the completely divergent worldviews of American doctors and Hmong patients in Merced, California, where many Hmong refugees from Laos have settled:

Most Hmong believe that the body contains a finite amount of blood that it is unable to replenish, so repeated blood sampling [for lab tests] . . . may be fatal. When people are unconscious, their souls are at large, so anesthesia may lead to illness or death. If the body is cut or disfigured, or if it loses any of its parts, it will remain in a condition of perpetual imbalance, and the damaged person not only will become frequently ill but may be physically incomplete during the next reincarnation; so surgery is taboo. If people lose their vital organs after death, their souls can’t be reborn into new bodies and may take revenge on living relatives, so autopsies and embalming are also taboo. . . .

Not realizing that when a man named Xiong or Lee or Moua walked into the Family Practice Center with a stomachache he was actually complaining that the entire universe was out of balance, the young doctors of Merced frequently failed to satisfy their Hmong patients. How could they succeed? . . . They could hardly be expected to “respect” their patients’ system of health beliefs (if indeed they ever had the time and the interpreters to find out what it was), since the medical schools they had attended had never informed them that diseases are caused by fugitive souls and cured by (sacrificing) chickens. All of them had spent hundreds of hours dissecting cadavers . . . but none of them had had a single hour of instruction in cross-cultural medicine. To most of them, the Hmong taboos against blood tests, spinal taps, surgery, anesthesia, and autopsies—the basic tools of modern medicine—seemed

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like self-defeating ignorance. They had no way of knowing that a Hmong might regard these taboos as the sacred guardians of his identity, indeed, quite literally, of his very soul. (Fadiman, 1997:33, 61)

Growing recognition of problems like these has spurred some hospitals to begin working with traditional healers (Puno.com, 2017). Mercy Medical Center in Merced now allows shamans to hold healing ceremonies in the hospital, and both shamans and doctors participate in classes to learn about each others’ culture. Similarly, most medical schools now provide students with at least some training in working with culturally diverse populations, as Chapter 11 discusses in more detail.

Case Study: Environmental Racism

One health issue that cuts across America’s minority communities is environ- mental racism. The term environmental racism refers to the disproportionate bur- den of environmental pollution experienced by ethnic minorities—from Hispanic farmworkers exposed to dangerous pesticides to Navajo communities poisoned by deadly uranium mines and inner-city African Americans plagued by asthma- inducing air pollution (Brulle and Pellow, 2006; Bullard et al., 2001; Taylor, 2014). Lead is the most important of these environmental hazards, because it is so wide- spread and devastating and found in polluted air, contaminated soil, and the paints and pipes of older residences. African American children are twice as likely as white children to have dangerous levels of lead in their blood (National Health and Nutrition Examination Survey, 2016.) Similarly, a recent study found that Af- rican Americans and Hispanics living in California were six times more likely than whites to live in areas polluted by carbon monoxide, ozone, sulfur, pesticides, and other toxic substances—and found that ethnicity predicted exposure to environ- mental hazards better than did poverty (Cushing et al., 2015).

Environmental racism is a consequence of “everyday” racism. Racial dis- crimination keeps members of minority groups in segregated communities and enables industrialists, with the tacit approval of government bureaucrats and pol- iticians, to place environmental hazards in those communities without worrying that residents will have the political power or financial resources to resist (Taylor, 2014). Poverty and lack of other job opportunities can even encourage minority communities to welcome polluting industries for the jobs they will bring. This doesn’t mean, however, that those who make decisions about where to locate en- vironmental hazards intend to discriminate against minorities. Certainly those who make these decisions would argue that they decide solely on economic and tech- nical considerations. Nevertheless, their actions have the effect of discriminating.

AGE

Overview

Not surprisingly, age is the single most important predictor of mortality and mor- bidity. As noted in Chapter 2, deaths during the first year of life were common in the United States until the 20th century. Although far less common now, infant

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mortality remains an important issue because so many years of productive life are lost when an infant dies and because infant mortality is often preventable.

Once individuals pass the danger zone during and immediately after birth, mortality rates drop precipitously. Those rates begin to rise significantly beginning at around age 40 and escalate with age. For those who survive past age 65, chronic diseases rather than acute diseases make up the major health problems, often bringing years of disability in their wake.

The American population is aging steadily, with the population above age 85 growing the fastest. Although most middle-aged and older persons are rela- tively healthy, rates of illness, disability, and mortality nevertheless are rising as the population ages. Similarly, both the total costs for health care and the percentage of health care dollars spent on the elderly—already greatly disproportionate to the size of that population—are bound to increase. At the same time, as young persons become a smaller proportion of the population, the pool of persons who can provide or pay for the care needed by the elderly is shrinking. Consequently, in the future, it will become more difficult to provide services to all the elderly persons who will need health care or assistance with daily tasks such as shopping or cooking.

These problems are amplified by the feminization of aging—the steady rise in the proportion of the population who are female in each older age group so that women constitute a larger proportion of the elderly than of the young and middle aged. Because elderly women more often than elderly men are poor and lack a spouse who can or will care for them and because (as we will see in the next section) women, in general, experience more illness than men, the feminization of aging will increase the costs of providing health and social services to the elderly.

SEX AND GENDER

Overview

Both sex and gender strongly affect health status. Sex refers to the biological cat- egories of male and female to which we are assigned based on our chromosomal structure, genitalia, hormones, secondary sexual characteristics such as facial hair, and so on; those with two X chromosomes and a vagina are sexually female, and those with one X chromosome, one Y chromosome, and a penis are sexually male. (Later in this section, we will consider those who don’t fit neatly into these categories.) In contrast, gender refers to the social categories of masculine and feminine and to the social expectations regarding masculinity and femininity that we are expected to follow based on our assigned sex. Because these categories are social, they vary across time and across culture.

Basic epidemiological data show that both sex and gender affect health (Bird and Rieker, 2008; Read and Gorman, 2010; Rieker, Bird, and Lang, 2010). For example, before the 20th century, complications of pregnancy and childbirth often cut short women’s lives, so women died younger than men on average. These days, however, American women (regardless of race) live longer than men, as Figure 3.1

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showed—even though the same diseases (including heart disease, cancer, and cerebrovascular disease) eventually kill most people. The differences between men’s and women’s life expectancies suggest that sex may directly affect health, but the changes in these differences across time suggest that gender affects health: Women now live longer than men not because their biology has changed, but because their social position has changed.

Mortality differences tell only part of the story. If we look only at life expec- tancy, we might conclude that women are biologically hardier than men. When we look at morbidity rates, however, the picture blurs. At each age, men have higher rates of mortality and fatal diseases, even though women have higher rates of mor- bidity and nonfatal disease (Bird and Rieker, 2008; Read and Gorman, 2010). Ar- thritis, for example, is the most common chronic, nonfatal condition among both men and women older than age 45 years, but it strikes women around 50% more often than it does men. In addition, at each age, women experience a 20% to 30% greater incidence of acute conditions (not including health problems related to their reproductive systems). In sum, women live longer than men but experience more illness and disability, whereas men experience relatively little illness but die more quickly when illness strikes.

How can we explain these paradoxical findings? Some researchers have hy- pothesized that women’s higher rates of illness are more apparent than real—that women don’t actually experience more illness than men but simply label them- selves ill and seek health care more often. Most research, however, suggests that the health differences between men and women are real (Bird and Rieker, 2008; Read and Gorman, 2010). These differences stem from both the biological differences of sex and the socially reinforced differences of gender.

Sex does seem to offer females some biological health benefits (Bird and Rieker, 2008; Read and Gorman, 2010). Around the globe, more females than males survive at every stage of life from fetus to old age as long as they receive adequate nutrition. Although the exact mechanisms through which this works are unknown, some theorize that estrogen and other “female” hormones (which, in fact, also occur in males but in lower proportions) somehow protect the heart and other organs from fatal disease.

Gender, too, protects women from fatal disease and injury (Bird and Rieker, 2008; Read and Gorman, 2010; Rieker, Bird, and Lang, 2010). Most important is that female gender roles lead women to abuse alcohol less often than men, drive more safely, avoid dangerous sports, and so on. Women are also less likely than men to work in dangerous industries such as agriculture or commercial fishing. In ad- dition, women’s gender roles often bring them into routine contact with medical care, whether for themselves or for children or elderly parents. Finally, unlike men, who are socialized to downplay physical problems as signs of weakness, women are more comfortable seeking health care when they experience problems. As a result, women are more likely to have health problems identified and treated early enough to make a difference.

Sex and gender may also help explain why, despite women’s lower rates of mortality, they have higher rates of morbidity than do men. Research on this topic, however, is far less conclusive (Barker, 2005). Most commonly, theories suggest

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that women are more susceptible to nonfatal illnesses because of their hormones (a sex effect) or because of their relatively high stress levels coupled with low control over their lives (a gender effect). The latter theory gains support from an article published in the prestigious American Sociological Review and based on na- tional data collected from random samples over a 30-year period (Schnittker, 2007). The article found that women’s self-reported health (a measure of mor- bidity) had improved considerably from 1974 to 2004 and that almost all of the improvement was explained by women’s increased educational attainment, which in turn increased their employment and income. Increased education apparently gives women more power over their lives and therefore improves their health.

These changes are part of a broader move toward gender convergence (An- nandale, 2010). Gender convergence refers to the growing similarities in ex- pectations for how men and women should behave in their everyday lives. This gender convergence may well result in greater convergence in men and women’s patterns of health, illness, and mortality. For example, women’s new freedom to join the Marines may increase their health risks, whereas men’s new freedom to feel comfortable marrying women who earn high incomes may reduce men’s health risk by reducing their economic and psychological stress.

Case Study: Intimate Partner Violence and Health

One health issue in which gender plays an especially critical role is violence by in- timate partners. Although neither health care workers nor the general public typ- ically thinks of partner violence as a health problem, it is a major cause of injury, disability, and death among American women—as it is among women worldwide.

Data on intimate partner violence is now collected regularly by the Centers for Disease Control and Prevention (CDC), the federal agency responsible for tracking and preventing the spread of diseases in the United States. According to CDC data collected through a large, national, random sample, around 20% of women (compared to some 2% of men) have been raped by a spouse, ex-spouse, lover, or date at some point in their lives (Smith et al., 2017). In addition, 22% of women report being severely beaten by a partner during their lifetime, com- pared to 14% of men. These numbers, however, probably understate women’s risks compared to men’s, given that women more often use violence only in self- defense, more often are hospitalized or develop posttraumatic stress syndrome after an attack, and are three times as likely as men to be killed by intimate partners (Caldwell, Swan, and Woodbrown, 2012; Stuart et al., 2006; Tjaden and Thoennes, 2000). Almost all intimate partner violence is perpetrated by men: 98% of attacks against women and 87% of attacks against men are perpetrated by men (Smith et al., 2017).

That assaults by men far surpasses assaults by women should not surprise us. Sources ranging from pornographic magazines to religious teachings that give husbands the responsibility to “discipline” their wives continue to teach men that violence is an acceptable response to stress and that women are acceptable targets for that violence (Dobash and Dobash, 1998). Although most men resist these messages, enough men absorb these messages to make woman battering a major

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social problem. Moreover, women typically have less access to money than do their male partners and so often find themselves financially unable to leave if a relation- ship turns violent. These same ideas and circumstances can leave some men at risk of violence by their male partners.

Intimate partner violence most often occurs when men believe that their power within the family is threatened, such as men who have less education than their wives (Tjaden and Thoennes, 2000). In addition, violence occurs most often among men who have a high need for power and who support traditional gender roles. Taken together, these data tell us that intimate partner violence is not only an individual response to social stress but also a form of social control: a way of reinforcing social expectations and power relationships. Most often, intimate vi- olence against women operates as social control by reinforcing men’s power over women and women’s inferior position within society. Consequently, as long as gender inequality remains the norm, such violence will persist.

Recognition of intimate partner violence as a health risk has led various health-related organizations to enter the fight against it. During the past decade, the CDC has begun funding research on the causes, consequences, and preven- tion of intimate partner violence. In addition, the U.S. Public Health Service has developed violence-prevention programs, trained health professionals and others in violence prevention, and encouraged health care workers to learn how to iden- tify battered women in hospital emergency departments. Similarly, the American College of Obstetricians and Gynecologists now requires medical schools to teach how to identify and respond to battered women and publishes materials designed to help health professionals do so.

Transgender Health Issues

So far, we have been talking about sex and gender as if each was a binary category— one with only two possibilities: male or female in the case of sex, masculine or feminine in the case of gender. Life, however, is more complicated.

The term transgender refers to people whose sense of their own gender does not match the physical sex (male or female) they were assigned at birth. This term is used to describe two groups. The first consists of individuals who would like to change their bodies to better fit the physical sex that matches their sense of their true selves. The second consists of those whose gender identity crosses cultural boundaries that divide masculinity from femininity but who have little interest in changing their bodies to fit within those boundaries.

Currently, around 1 of every 200 persons in the United States identifies as transgender (Crissman et al., 2017). This statistic, however, undoubtedly under- states the size of the transgender population, because many fear identifying them- selves as such even to researchers. Others may no longer identify as transgender because they have used surgeries and hormones to change their bodies and have fully transitioned to the sex they always believed themselves to be.

Unfortunately, obtaining proper health care remains difficult for many trans- gender people (Dickey, 2017; Program for LGBTI Health, 2017). Medical schools typically provide almost no education regarding the needs of transgender patients.

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As a result, doctors might not understand, for example, that calling patients by their birth names rather than their chosen names might lead patients to distrust their doctors. Nor might doctors realize that an individual who has transitioned to living as a man might still have ovaries that need to be periodically checked for disease. On the other hand, getting access to sex-transition surgeries and medical care is easier than it was 20 years ago because of both technological advancements and increasing acceptance of interventions among doctors, insurance companies, and the general public. That said, there are still many who object to providing such care; as of 2017, for example, the state of Wisconsin officially excludes sex- transition health care from the health insurance it offers to state employees.

At the same time, this change in attitudes reinforces the idea that anyone who does not fit into one and only gender is biologically and psychologically defective (Davis, Dewey, and Murphy, 2016). Indeed, doctors seem to regard their inter- ventions as a success only if their former patients now closely match stereotypical ideas about what a man or woman should be like. Such attitudes continue to stigmatize transgender people who cannot or will not seek medical interventions (Davis, Dewey, and Murphy, 2016).

Whether or not transgender individuals are comfortable living outside our society’s gender expectations, they often face harrowing levels of stigma and dis- crimination (Bockting et al., 2013). As a result, as a group they are less likely to attend college and more likely to attempt suicide, experience poverty, suffer from poor health, or face difficulty obtaining health care (Meyer et al., 2017).

Intersex Health Issues

Whereas transgender refers to individuals’ sense of their gender, intersex refers to the biology of individuals’ sex. Intersex refers to individuals who are born with physical markers of sex (such as genitalia, chromosomes, or gonads) that are nei- ther clearly male nor clearly female (Davis and Preves, 2017). Intersexuality can be caused by hormonal factors, chromosomal factors, or both. Up to 1.7% of babies are intersex (United Nations, 2017).

Since the 1950s, surgery and hormonal manipulation have been the standard medical responses to the birth of intersex infants in the United States (Kessler, 1998). Doctors typically urge parents to have the infants surgically “corrected” to more clearly fit into one sex category as soon as possible on the assumption that this will help children develop into the “appropriate” gender. Most often, doctors assign babies to a sex based on the size of the babies’ phalluses. If the doctors con- sider the phalluses to be large enough, the babies are assigned to be boys. If not, they are assigned to be girls.

Once this decision is made, parents are instructed to strictly socialize the chil- dren to their new gender. Parents may also be told to place the child on a steady diet of hormones to better match their assigned sex. In addition, surgeons “create” girls by removing or reducing clitorises (if larger than average), removing testes (if present), and creating artificial vaginas (if absent). All these surgeries involve removing healthy tissue, and all can impair or eliminate individuals’ ability to reproduce or to experience sexual pleasure.

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More recently, however, this standard medical treatment has come under con- siderable attack from both scholars and activists, some of whom experienced sex assignment as children. Opponents of sex assignment point out that this treatment is based not on scientific evidence but on gender beliefs: that small penises are “un- manly,” that large clitorises are frightening, that children need strict socialization into “appropriate” gender behaviors, and that a vagina “works” if it allows penile penetration, even if it lacks natural lubrication, elasticity, or the ability to provide female sexual pleasure (Kessler, 1998; Preves, 2003). Moreover, opponents argue, sex assignment reinforces children’s sense of difference and often depends on webs of deception among children, parents, and doctors that can create their own psy- chological nightmares (Kessler, 1998; Preves, 2003).

These critiques have had some impact. In 2006, a series of discussions be- tween medical experts and activists led to an important but controversial consen- sus statement published by the American Academy of Pediatrics. That statement urged doctors to refrain from surgically altering the bodies of intersex babies for at least a few months after birth to give parents time to consider other options. It also stated that surgery should not be performed solely for cosmetic reasons—except for girls whose clitorises are exceptionally large (Accord Alliance, 2014; Davis, 2015). Finally, it recommended replacing the term intersex (which some consider pejorative) with a new diagnosis of disorders of sex development.

Although some activists approved of these recommendations, others do not believe that intersex is a disease (or “disorder”) and therefore reject the idea that intersex bodies need changing. Similarly, in 2015 the United Nations declared that medical and surgical procedures performed on intersex children constitute a violation of basic human rights. Meanwhile, however, surgery continues to be the norm.

SOCIAL CAPITAL

Social capital refers to the resources available to an individual through his or her social network (Lutfey and Grace, 2016; Song et al., 2010). It is typically measured by some combination of the number of people with whom one has close personal relationships and the resources one can access through those relationships. Those resources can take many forms. For example, your social networks might (or might not) offer you access to expert advice, useful skills, or a good apartment to rent. Although one’s social capital is typically linked to one’s social class, each affects health independently. In addition, social capital also varies, depending on one’s ethnicity, gender, and age, among other factors. Thus, social capital pulls together the advantages (and disadvantages) built into all of the social statuses discussed in this chapter.

Social capital affects health in several ways (Song et al., 2010). Among other things, individuals with higher social capital typically have better access through their networks to high-quality information. For example, individuals who have doctors as friends are more likely to learn of the dangers of popular new drugs. In addition, social capital can offer individuals the emotional and practical support

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needed to preserve their health such as encouragement to stop smoking or a loan to cover the costs of an operation. At a broader level, social capital can protect health by providing power and political influence. For example, because affluent neighborhoods typically include not only doctors but also lawyers, politicians, and business leaders, social networks in those neighborhoods have the resources needed to fight against highways, polluting factories, or anything else that might harm the health of individuals in those neighborhoods.

IMPLICATIONS

Far from being purely biological conditions reflecting purely biological factors, health and illness are intimately interwoven with social position. In the United States, as elsewhere, those who are poor or are targets of racial discrimination die younger than others do. Sex and gender have more complex health consequences: Women enjoy longer life spans than men do, but they are subject to more illness and disability. Importantly, each of these factors (along with age) interacts with the oth- ers, leaving some individuals at much greater risk of illness and injury than others.

Given that social forces as well as biological factors affect health, understand- ing social trends can help us predict future health trends. For example, as wom- en’s social roles have changed, their rates of tobacco use and lung cancer have approached those of men, and their ability to protect themselves from the health consequences of male violence has increased. Similarly, if economic and ethnic inequality either increase or decrease, we are likely to see changes in the health status of currently disadvantaged economic and ethnic groups.

SUMMARY

1. The causes and types of illness in the United States vary dramatically according to social class, ethnicity, age, sex, and gender.

2. Social class strongly affects rates of mortality and morbidity. Poor persons are substantially more likely than others to experience illness and disability and to die young. These social class differences primarily reflect lower-class persons’ exposure to environmental hazards, unsafe working conditions, inadequate housing, poor nutrition, and psychological stress.

3. Ethnicity also affects health status. Infant mortality rates are especially high among African Americans and Native Americans. African Americans, Hispanic Americans, and Native Americans are all more likely than white Americans to die of conditions linked to poverty and despair, including liver disease and diabetes. In contrast, health is generally excellent among Asian Americans except for recent poor immigrants from Southeast Asia.

4. Environmental racism refers to the disproportionate burden of environmental pollution experienced by racial and ethnic minorities.

67T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

5. For those who survive infancy, mortality rates rise significantly beginning at around age 40. For those who survive past age 65, chronic illnesses rather than acute illnesses comprise the major health problems.

6. The American population is aging steadily. As a result, future years will see higher rates of illness, disability, and mortality as well as increased health care costs.

7. The United States is experiencing the feminization of aging—that is, each age cohort has a higher percentage of women than the next younger cohort. As a result, in the future more Americans will likely need health care, and fewer will be able to afford it.

8. Although men have higher rates of fatal diseases and die younger, women experience higher levels of nonfatal, chronic conditions. These differences stem from both sex differences (such as hormone levels) and gender differences (such as levels of risk taking).

9. The term transgender refers to people whose sense of their own gender does not match the physical sex they were assigned at birth. Transgender individuals face additional health risks because of stigma and discrimination. As the medical world becomes more willing to surgically and medically change individuals’ bodies to better fit individuals’ sense of their own gender, it may reinforce the idea that anyone who does not fit into one and only gender is biologically and psychologically defective.

10. The term intersex refers to individuals born with characteristics of both sexes. Until recently, intersex was treated solely as a medical and surgical problem based on social ideas about gender.

11. Social capital refers to the resources available to an individual through his or her social network. Although social capital is closely linked to social class, both independently affect health.

REVIEW QUESTIONS

1. How and why does social class affect people’s health?

2. What are the special health problems of migrant farmworkers?

3. How does ethnicity affect health separately from social class? How does social class affect health separately from ethnicity?

4. How and why do the particular health problems of African Americans, Hispanic Americans, Native Americans, and Asian Americans differ from those of whites?

5. What is environmental racism?

6. What are the health care consequences of an aging population and the feminization of aging?

7. Why do men have higher mortality rates than women but lower morbidity rates?

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8. What are the sources and consequences of intimate partner violence? Why do some health care workers consider it to be a serious health problem?

9. Everyone has social capital, regardless of their social class. Give an example of the social capital that a working-class person might have, and how that social capital might help him or her stay healthy.

CRITICAL THINKING QUESTIONS

1. Explain why poor persons become ill more often and die younger than wealthier persons.

2. Assume that over the next 20 years both men and women increasingly adopt behavior patterns now associated with the other gender. What changes would you expect to see in the health of men and women? Explain your answer.

3. Assume that 20 years from now, African Americans are as likely as whites to graduate from college. Why and in what ways would you expect the health of the African American population to improve? Why and in what ways would you expect it to remain the same?

C H A P T E R

Illness and Death in the

Less Developed Nations

C H A P T E R

Ja ke

Ly el

l/A la

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St oc

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LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Explain the differences between more, less, and least developed nations. ● Assess the ways that globalization affects health around the world. ● Understand the changing patterns of disease in less developed nations. ● Identify the main types and causes of disease in the less developed nations.

Mahabouba Muhammad grew up in a small village in Ethiopia. Many Ethiopian girls receive little education and have few rights, but Mahabouba’s situation was particularly poor: Her parents had divorced and left her with an aunt who treated her like a servant. As a result, Mahabouba eventually ran away to the nearest town to find work as a maid in exchange for room and board:

“Then a neighbor told me he could find better work for me,” Mahabouba recalled. “He sold me for eighty birr [10 dollars]. He got the money, I didn’t. I thought I was going to work for the man who bought me, in his house. But then he raped me and beat me. . . . I was about 13.”

The man, Jiad, was about 60 years old and had purchased Mahabouba to be his second wife. In rural Ethiopia, girls are still sometimes sold to do manual labor or to be second or third wives. . . .

[Jiad and his first wife] wouldn’t let Mahabouba out of the house for fear she might run away. Indeed, she tried several times, but each time she was caught and thrashed with sticks and fists until she was black, blue, and bloody. Soon, Mahabouba was pregnant, and as she approached her due date, Jiad relaxed his guard over her. When she was seven months pregnant, she finally succeeded in running away. . . .

Unable to afford a midwife when she went into labor, Mahabouba tried to have the baby by herself. Unfortunately, her pelvis hadn’t yet grown large enough to accommodate the baby’s head, a common occurrence with young teenagers. She ended up in obstructed labor, with the baby stuck inside her birth passage. After seven days, Mahabouba fell unconscious and at that point someone summoned a birth attendant. By then the baby’s head had been wedged there for so long that the tissues between the baby’s head and Mahabouba’s pelvis had lost circulation and rotted away. When Mahabouba recovered consciousness, she found that the baby was dead and that she had no control over her bladder or bowels. She also couldn’t walk or even stand, a consequence of nerve damage that is a frequent by- product of [obstructed pregnancies]. (Kristof and WuDunn, 2010:93–94)

Mahabouba’s story—rape, beatings, pregnancy too young, unattended childbirth—is all too common in much of the world. As this suggests, the sources

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and patterns of illness and death in poorer countries differ dramatically from those found in more affluent countries—and often reflect social conditions as well as biological forces. In this chapter, we first compare some of these differences. We then focus on explaining the main sources of death and disease (including illness and death in childbirth), focusing on the role played by social, economic, and political conditions and forces.

SETTING THE STAGE: KEY CONCEPTS

A few key concepts are needed to understand disease patterns around the world. This section lays out those concepts.

Understanding Development Patterns

In making international comparisons, politicians, social scientists, medical research- ers, and others typically divide the world into two broad groups: the more devel- oped nations and the less developed nations. Essentially, this division reflects the economic status of the various nations. The more developed nations are primarily defined by their relatively high gross national income (GNI) per capita compared with the less developed nations. In addition, the more developed nations are char- acterized by diverse economies made up of many different industries, whereas the less developed nations have far simpler economies, and in some cases still rely heavily on extractive industries such as mining or logging or a few agricul- tural products such as rubber or bananas. These economic differences—primarily resulting from centuries of exploitation by political and economic powers in the more developed nations—have left the less developed nations with high infant and maternal mortality, low life expectancies, and damaging levels of infectious and parasitic diseases.

That said, the less developed nations also differ substantially from each other. Sociologists and other researchers use the term least developed nations to refer to those less developed nations that suffer from the least diverse economy and low- est GNIs and life expectancies. For example, life expectancy in Ethiopia is only 65 years, and gross national product per capita is only $1,730 (Population Reference Bureau, 2017). Table 4.1 compares life expectancies and infant mortality rates in the least, less, and more developed nations. As is common in the field, except when directly comparing the less and least developed nations, this textbook uses the former term to refer to both groups.

Although dividing the globe into least, less, and more developed nations is a useful analytic tool, it is important to recognize that development level is a scale, not a dichotomy. Mexico and Thailand, for example, fall near the border between the more and less developed nations: Each has both complex industries and tra- ditional agricultural crops, and each enjoys infant mortality rates and life expec- tancies approaching those found in the United States. And although infectious and parasitic diseases remain more common in Mexico and Thailand than in the

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United States, chronic diseases are now the most common cause of death in all three nations (World Health Organization, 2010).

This terminology also should not keep us from recognizing that social conditions and hence health patterns vary from community to community and from social group to social group within each nation. Thus, conditions in central Detroit in some ways resemble those in Bangladesh, whereas condi- tions in wealthy sections of Bangkok resemble those in Beverly Hills. Within the less developed nations, the income gap—and consequently the “health gap”—between rich and poor has increased in the past two decades. These growing gaps in income and health largely stem from “structural adjustment” policies that have been heavily promoted by international organizations based in the most developed nations. These policies pressed developing nations to

Life Expectancy and Infant Mortality by Development LevelTABLE 4.1

Country Life Expectancy at Birth Infant Mortality per 1000 Births

Most Developed

Japan 84 1.9

Italy 83 3.0

France 82 3.5

Germany 81 3.3

Denmark 81 3.1

United States 79 5.8

Less Developed

Mexico 77 18

Chinaa 77 10

Philippines 70 21

Thailand 76 10

Bolivia 69 39

India 69 37

Least Developed

Haiti 64 48

Ethiopia 65 48

Somalia 56 74

Sierra Leone 52 92

Afghanistan 64 60

aDoes not include Hong Kong, which only became part of China in 1997 and operates under a separate political structure.

SOURCE: Population Reference Bureau (2017)

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cut back programs such as food subsidies and low-cost health care in exchange for economic aid from international nonprofit organizations (Kolko, 1999; Peabody, 1996).

Finally, although the terms least developed, less developed, and more developed imply linear progression from one status to the other, this is not necessarily the case. For example, economic and health conditions worsened in Eastern Europe after the collapse of the Soviet Union and in southern Africa after the start of the HIV/AIDS epidemic.

Understanding Globalization

Although it is important to understand development stages and disease patterns within individual nations, it is equally important to understand that diseases respect no national borders. Because of globalization, diseases and disease-causing conditions spread rapidly from less to more developed nations and vice versa (Quammen, 2013). For example, air pollution from China is now causing heart disease and asthma in the western United States, and the recycling of used U.S. electronics equipment across Asia is releasing toxic acids and metals into drinking water in those countries (Leahy, 2017).

Because the United States and Mexico share the same water, air, and, to a growing extent, economies where the two nations meet, U.S. citizens need to be especially concerned about health conditions in Mexico. For example, the many factories located in Juarez, a large city just south of El Paso, Texas, are notorious for spewing toxic chemicals into the air and aquifers shared by both countries (Collins, Grineski, and Aguilar, 2009). Similarly, only one-third of the sewage gen- erated by residents of Juarez is appropriately treated (Schmidt, 2000). As a result, human wastes drain from Juarez into the Rio Grande, and from there into El Paso’s drinking water supplies, making gastrointestinal disease a leading cause of infant mortality in both cities. As this example suggests, those who live in the more de- veloped nations have a vested interest in understanding health and illness in the less developed nations.

Understanding Global Health

As this discussion of globalization suggests, dealing with health issues one nation at a time has inherent limitations. This problem has led to new interest in what is re- ferred to as global health (Farmer, Kim, and Kleinman, 2013). Global health refers to the ways that health and illness transcend borders—along with people, goods, health providers, floods, crops, and so on. The idea of global health emphasizes that disease can be spread or prevented not only by national governments but also by myriad other players from the World Bank to local nonprofits, to small peddlers who move drugs, needles, food, and other supplies across borders. Finally, the concept of global health emphasizes the similarities as well as differences in health problems around the world and the importance of developing equitable solutions to those problems. As this suggests, the term is primarily used by those who take a critical stance toward health and society.

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EXPLAINING DEATH AND DISEASE IN LESS DEVELOPED NATIONS

In this section, we look at the main types and causes of diseases in the less developed nations, including malnutrition, infectious diseases, maternal mortality, and war.

Chronic Disease

In a major change from past generations, chronic disease (especially heart disease and strokes) is rapidly emerging as a common cause of death in the less developed nations. Table 4.2 shows the leading causes of death around the world (WHO, 2018). However, residents of less developed nations who have chronic diseases are far less likely to have access to appropriate treatment than are residents of more developed nations.

Leading Causes of Death Around the WorldTABLE 4.2

Less Developed Nations*

Lower Income Higher Income Least Developed Nations

More Developed Nations

Lower respiratory infections

Coronary heart disease

Diarrheal diseases Stroke and other cerebrovascular disease

Stroke and other cerebrovascular disease

Stroke and other cerebrovascular diseases

Stroke and other cerebrovascular disease

Lower respiratory infection

Chronic obstructive pulmonary disease

Alzheimer’s disease and other dementias

Coronary heart diseases

Chronic obstructive pulmonary disease

Trachea, bronchus, lung cancers

HIV/AIDS Tuberculosis Lower respiratory infections

Chronic obstructive pulmonary disease

Tuberculosis Diarrheal diseases Diabetes Lower respiratory infections

Malaria Diabetes Alzheimer’s disease and other dementias

Colon and rectum cancers

Maternal mortality Maternal mortality Road injury Diabetes

Birth asphyxia and birth trauma

Cirrhosis of the liver

Liver cancer Kidney diseases

Road injury Road injury Stomach cancer Breast cancer

*For these data, the World Health Organization divides the less developed nations into two groups, based on gross national incomes.

SOURCE: World Health Organization (2018)

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Ironically, the rise in chronic disease reflects in part the problems caused by rising incomes. As new middle classes have emerged in countries such as China and India, tobacco use, alcohol use, automotive travel, and obesity have all in- creased, causing deaths from lung cancer, alcohol-related disease and injuries, fatal accidents, diabetes, and heart disease. Moreover, these nations still have millions of poor citizens, so they are burdened by the economic, social, and health costs of both “diseases of wealth” such as diabetes and “diseases of poverty” such as tuber- culosis (Yach et al., 2004).

Poverty, Malnutrition, and Disease

The primary cause of low life expectancies in the less developed nations is pov- erty. In Chapter 3, we saw that wealthy Americans experience less illness and live longer than do poorer Americans. In the same way, wealthier nations have lower rates of illness and mortality than do poorer nations. The average life expectancy is 65 years in the least developed nations, 71 years in the less developed nations, and 79 years in the more developed nations—a 14-year difference all told (Population Reference Bureau, 2017).

In large part, poverty causes disease and death by causing chronic malnu- trition. Malnutrition causes disease and death by damaging the body’s immune system, leaving individuals more susceptible to all forms of illness and contributing to both infant and maternal mortality. In addition, malnutrition leads to numer- ous health problems, including brain damage caused by iodine deficiency, blind- ness caused by vitamin A deficiency, and mental retardation caused by anemia. For these reasons among others, malnutrition underlies many deaths in the least developed nations.

The Roots of Chronic Malnutrition Given the link between malnutrition, illness, and death, investigating the roots of chronic malnutrition is clearly import- ant. At first thought, we might easily assume that malnutrition in less developed nations that have not yet experienced the epidemiological transition results naturally from overpopulation combined with insufficient natural and technolog- ical resources. Yet on a global level, farmers now grow twice as much food as is needed to feed the world’s population (Holt-Giménez and Peabody, 2008; Lappé, Collins, and Rosset, 1998; UNICEF, 2014). This bounty, however, may soon end because of population growth, changes in climate that will make it impossible to grow crops in many regions, the use of crops such as corn for fuel rather than for food, and the rise in meat eating in newly wealthy parts of Asia (Palmer, 2017).

For now, however, malnutrition cannot be blamed on population density (Lappé et al., 1998). The Netherlands, for example, is one of the most densely populated countries in the world, yet chronic malnutrition no longer occurs there. Similarly, malnutrition has largely disappeared from Costa Rica but remains com- mon in nearby Honduras, even though the latter has twice as much cropland per person.

If overpopulation, lack of food, population density, and lack of cropland don’t explain chronic malnutrition, what does? The answer lies in the social distribution

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of food and other resources: Malnutrition occurs most often in countries where resources are most inequitably distributed. In other words, malnutrition occurs not in countries where resources are scarce but in countries where a few people control many resources while many people have access to extremely few resources (Dreze and Sen, 1989; Lappé et al., 1998). Similarly, within each country, malnutrition occurs most often among those groups—typically females and the poor—with the least access to resources (Messer, 1997). In essence, then, malnutrition is a disease of powerlessness.

If powerlessness causes malnutrition, then eliminating power inequities should eliminate malnutrition. Evidence from China (officially known as the People’s Republic of China) and Costa Rica supports this thesis. In the past, both nations adopted socialistic strategies for redistributing resources somewhat more equitably. By giving farmland to formerly landless peasants, extending agricultural assistance to owners of small farms, working to raise the status of women, and so on, they made chronic malnutrition almost unknown within their borders. On the other hand, China has not proved immune to acute malnutrition caused by famines. According to Nobel Prize–winning economist Amartya Sen, famines occur only when (1) natural events reduce harvests and (2) nondemocratic governments (such as China’s) can ignore citizen’s basic needs because politicians know they can’t be voted out of office (Sen, 1999). “Contemporary Issues: Linking Sanitation and Malnutrition,” p. 76, further illustrates how power inequalities can continue to breed malnutrition, even when countries begin to develop and food becomes more widely available.

The Role of International Aid In less developed nations that are democrat- ically run, international aid—both food aid and development projects—has

CONTEMPORARY ISSUES

Linking Sanitation and Malnutrition

Since the start of this century, India has experienced an economic boom. As a result, many more children across the country receive what should be enough calories and nutrients to foster healthy growth. Yet an estimated 65 million children under age five are malnourished, including one-third of those from wealthy families (Harris, 2014).

How could this be? Until quite recently, nutrition researchers assumed quite reasonably that malnourishment resulted solely from lack of healthy food. In the last few years, however, researchers have increasingly concluded that lack of proper sanitation is a major cause of malnourishment in densely populated countries like India (Harris, 2014). Because of continuing inequities in how public services are distributed around the nation, around half of all Indians lack toilets and must defecate outdoors. As a result, Indian children are constantly fighting infections caused by parasites and germs carried by rain down streets and alleys and into water supplies used for bathing and drinking. As a result, their bodies lack the energy needed for them to develop physically and mentally. Unfortunately, the resulting physical frailty and mental retardation are permanent.

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helped improve citizens’ standard of living and health status. But in nondemo- cratic nations, aid often has the opposite effect (Calderisi, 2006; Easterly, 2006; World Bank, 1998). In such nations, small, powerful elites often take control of food aid, sell it on the black market, and pocket the profits. Poor people can’t afford to buy food aid sold in the marketplace, so it doesn’t help them at all.

Like international food aid, internationally sponsored development projects have had mixed impacts on malnutrition and on health in general (Calderisi, 2006; Easterly, 2006; World Bank, 1998). According to the politically conservative World Bank, carefully designed projects, sensitive to local conditions and culture and located in countries with democratic governments, open trade, social safety nets, and conservative economic policies can reduce malnutrition and its root causes. In Peru, for example, malnutrition among children was cut in half by an interna- tionally supported program that was developed with local input to teach parents to recognize the signs of malnutrition and provide them with cash subsidies to better feed their children (Marini and Arias, 2016).

On the other hand, when aid projects are not built around local needs and culture, the results can be harmful. For example, large dam projects around the world have brought electricity to urban elites and to factories run by multinational corporations while also flooding and destroying agricultural fields and bringing plagues of waterborne diseases to rural dwellers (Basch, 1999:280–281; Farmer, 1999). Similarly, agricultural development projects have often encouraged men to grow cash crops, leading them to take over farmlands that women had previously used to grow food. But in many countries, men consider feeding the family to be a woman’s responsibility, and so men use their profits to purchase tobacco or other high-status goods for themselves rather than purchase food for their families. As a result, malnutrition increases among women and children (Lappé et al., 1998).

Infectious and Parasitic Diseases

One indirect result of malnutrition and poverty more broadly is a high rate of infectious and parasitic disease. As Table 4.2 shows, such diseases account for more deaths in the less developed nations (and far more in the least developed nations) than in the more developed nations.

As in Europe and the United States before the 20th century, the high rates of infectious and parasitic diseases in the less developed nations reflect the dismal circumstances in which many people live. As we’ve already seen, malnutrition leaves individuals far more susceptible to a wide range of diseases. In addition, overcrowding promotes the spread of airborne diseases such as tuberculosis, and contamination of the water supply with sewage spreads waterborne diseases such as cholera and intestinal infections. Similarly, poor housing and lack of clean water for bathing result in frequent contact with disease-spreading rats, fleas, and lice.

The infectious and parasitic diseases that cause the most deaths in the less de- veloped nations are HIV/AIDS, tuberculosis, diarrheal diseases, and malaria. The next section discusses these four diseases plus a fifth, Zika virus, which is spreading rapidly.

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HIV/AIDS In the less developed nations, HIV/AIDS now causes more deaths than any other infectious or parasitic disease. Heterosexual intercourse remains the major mode of HIV transmission (as it has been from the start), although illicit intravenous drug use and blood transfusions are also sources of infection (in the absence of funds to purchase sterile needles or medical equipment). Trans- mission from childbearing women to their babies, however, has declined sharply because of the use of antiretroviral drugs by pregnant women (UNAIDS/WHO, 2017).

Still, in the hardest-hit countries, around one-quarter of adults are infected with HIV/AIDS (Central Intelligence Agency, 2018). Sub-Saharan Africa ac- counts for almost two-thirds of all new infections (UNAIDS/WHO, 2017). HIV infection is also spreading rapidly in Eastern Europe and Central Asia, primarily among individuals who inject heroin and their sexual partners. Life expectancies for infected individuals have increased because of the development of antiretrovi- ral drugs but remain under 50 years in the developing world (Population Refer- ence Bureau, 2014).

As stunning as these numbers might appear, they understate the impact of HIV/AIDS. Unlike most illnesses, HIV/AIDS commonly strikes at midlife, nor- mally the most economically productive years. In the hardest-hit countries, agri- cultural production is declining steeply, causing food shortages. Moreover, unlike most diseases, HIV/AIDS has struck not only the poor but also the middle and upper classes (because of their greater access to sexual partners, reduced commit- ment to traditional and more conservative sexual norms, and residence in cities where the disease is more common) (Fortson, 2008; WHO, 2009a). Deaths among teachers, doctors, businesspeople, and the like have crippled schools and the econ- omy in numerous countries. The resulting increase in unemployment and poverty is sending ripples of illness and death throughout these countries. In addition, the deaths of many young mothers have produced a corresponding rise in deaths among children who lose their only (or best) provider.

Poverty primarily explains why HIV/AIDS has hit Africa especially hard. In addition, the epidemic has been stoked by labor migration, women’s low status, and sexual behavior patterns. Labor migration is common across Africa because the need to earn a living draws African men from small villages to cities and other areas where factories, mines, and plantations offer jobs. These men often must live apart from their wives and families for weeks, months, and even years at a time. Such conditions foster the use of prostitutes and consequently foster the spread of sexually transmitted diseases (STDs), including HIV/AIDS. In turn, some migrants may eventually carry these diseases back to their villages (Hunt, 1996; UNAIDS/ WHO, 2010).

Meanwhile, health conditions also deteriorate among women and children left in rural villages (Hunt, 1996). The loss of men’s labor makes it more difficult for women to grow sufficient crops to feed themselves and their children, leaving them increasingly malnourished and susceptible to disease. Faced with these conditions, women’s only option is to seek employment in cities, where many find that they must trade sex for cash or other favors to survive, even if doing so increases their risk of HIV/AIDS (Hunt, 1989; Simmons, Farmer, and Schoepf, 1996).

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As this suggests, girls’ and women’s low social and economic status also fosters the spread of HIV/AIDS in Africa. In countries where girls and women have low status, they may face physical violence if they ask a husband or other sexual partner to use a condom, find that male teachers demand sex as a requirement for attending school, or be pressured into marriages or sexual relationships with older men who are more likely to be infected. In addition, because their low status of- ten keeps them from accessing medical care, women are more likely than men to have untreated STDs that can produce open sores and thus increase the chances of infection for any woman who is exposed to HIV.

Sexual behavior patterns also play a role in the epidemic. Current research suggests that risks of infection are greater in Africa not because the average number of sexual partners is high there but because long-term, concurrent sexual partners are more common (UNAIDS/WHO, 2010). In Western countries, individuals typically have serial sexual partners—one after another—such as a first mar- riage followed by a brief sexual relationship or two and then a second marriage. In contrast, in parts of Africa (especially sub-Saharan Africa), individuals often have long-term concurrent sexual partners: multiple sexual relationships during overlapping time periods.

Concurrent partnerships increase the chances of spreading HIV/AIDS for two reasons. First, people around the world typically use condoms early in rela- tionships but stop doing so if the relationship continues. Consequently, persons in long-term concurrent relationships are more likely than those in short-term monogamous relationships to reach the point where they stop using condoms (Mah and Halperin, 2010). Second, HIV/AIDS is most easily transmitted only when an individual is healthy enough to have an active sex life and has a “high viral load” (i.e., has many HIV cells in his or her body). If an individual hits that peak transmission point while he or she has concurrent sexual partners, then all of those partners—and all of their partners—will be at risk.

Tuberculosis Each year, tuberculosis infects around 10 million people and kills 1 million or so (WHO, 2017a). The disease is most common in Asia, followed by Africa. Tuberculosis is particularly devastating because, like HIV/ AIDS, it typically hits people during their prime work years, so it sharply curtails family incomes.

Because of a consolidated, worldwide effort to make powerful treatment available even in poor regions, rates of tuberculosis have been falling for the past two decades in most of the world (WHO, 2017a). However, because HIV/AIDS makes individuals more susceptible to other infections, tuberculosis continues to increase in those African nations where HIV/AIDS is most common.

Diarrheal Diseases In the more developed nations, diarrhea typically causes only passing discomfort. In the less developed nations, diarrheal diseases are the second leading cause of death among children younger than age five (WHO, 2009b).

Diarrhea is a symptom, not a disease, and can result from infection with any of several bacteria, viruses, or parasites. Diarrhea kills through dehydration and electrolytic imbalance. It also leads to malnutrition when affected children

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not only eat less but also absorb fewer nutrients from the foods they do eat. In turn, malnutrition leaves children susceptible to other fatal illnesses. Con- versely, other illnesses can leave children susceptible to both diarrheal diseases and malnutrition.

Diarrheal diseases (including dysentery, cholera, and infection with Escherichia coli) occur when individuals ingest contaminated water or foods. The likelihood of severe diarrhea is greatest when families lack refrigerators, sanitary toilets, suf- ficient fuel to cook foods thoroughly, or safe water for cooking and cleaning. WHO estimates that around 2 billion people lack access to “improved” water supplies, and many more lack access to truly safe water (WHO/UNICEF, 2014). The number of persons without safe water is greatest in Asia, but the percentage of those without safe water is highest in sub-Saharan Africa.

Survival rates for children with diarrheal diseases in less developed na- tions have improved rapidly in recent years. Before the 1960s, those suffering from diarrheal diseases could be treated only by using expensive intravenous fluids, thus making treatment unfeasible for many in the less developed na- tions. Since then, however, scientists have developed saline solutions and pea- nut butter pastes that keep children alive at least as well as more expensive treatments.

Malaria Each year, around 200 million people become infected with malaria, and approximately one-half million—mostly African children—die from the re- sulting anemia, general debility, or brain infections (Shah, 2010; WHO, 2017b). In addition, millions more find themselves unable to work because of continuing malarial chills and fevers, or die because malaria leaves them susceptible to other fatal illnesses.

Malaria poses the greatest threat to pregnant women, infants, and young chil- dren. Among pregnant women, malaria increases the risks of miscarriage, anemia, and premature labor, each of which increases the risk of potentially fatal hemor- rhaging. Infants born to malaria-infected women typically have lower than aver- age birth weight and hence a higher chance of death or disability.

Malaria is caused by protozoan parasites belonging to the genus Plasmodium. Malaria is transmitted only by Anopheles mosquitoes and consequently exists only where those mosquitoes live. The disease cycle begins when a mosquito bites an infected individual and ingests the parasite from the individual’s blood. The par- asite reproduces in the mosquito’s stomach and then migrates to the mosquito’s salivary glands. The next time the mosquito bites someone, it transmits the parasite to that person.

Because of this transmission cycle, eliminating Anopheles mosquitoes will eliminate malaria. Since the 1940s, antimalaria campaigns have depended heavily on pesticides to kill mosquitoes. Although such campaigns initially work well, over time pesticide-resistant mosquitoes evolve, and the pesticides lose their potency (Shah, 2010). As a result, nations must constantly search for new and more toxic pesticides, each of which can endanger birds, fish, and insects that benefit hu- mans. Because of these problems, some recent campaigns have instead focused on

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encouraging the use of insect repellents, mosquito netting, and screens to prevent infection. These campaigns also have focused on encouraging the use of drugs such as chloroquine and mefloquine, which can both prevent and treat malaria. Unfortunately, because these drugs can cause debilitating side effects and cost more than many residents of developing nations can afford, infected individuals often stop taking the drugs before they are cured. This continual undertreatment of malaria, like the undertreatment of tuberculosis, has encouraged the evolution of drug-resistant malaria.

Zika Zika virus burst into the news in 2015 when Brazil was hit with an epi- demic of babies born with tiny heads and brains, leaving them with severe neu- rological and physical problems. Researchers quickly traced these problems to prenatal infection with Zika, which can be spread by mosquitoes and through unprotected sexual intercourse. Zika can also lead to serious neurological prob- lems in infected adults.

To date there is neither a vaccine nor a treatment for Zika. Instead, govern- ments and health authorities have relied on warning individuals to avoid both mosquitoes and unprotected sex. These measures, however, are almost meaningless for those most at risk (Lancet Global, 2016; Rasanathan, 2017). For example, many poor people in places like rural Brazil cannot afford to follow WHO’s recom- mendations to avoid mosquitoes by using air-conditioning and insect repellant, wearing only clothes that have no holes in them, and avoiding areas where water must be carried home in buckets.

Similarly, in developing nations where Zika is common, women have been warned to avoid unprotected sex, avoid pregnancy, and consider abortion. Yet many poor women lack the power to force men to use condoms and lack access to birth control or abortion (whether because of cost or because it is illegal). Nor has there been much effort to help families care for children with devastat- ing disabilities. This is a classic case of defining something as a personal problem rather than as a public issue. A more sociological approach would be to focus on strategies such as eliminating areas where mosquitoes breed and changing laws and health care systems to give women access to the information and care that they need.

Neglected Tropical Diseases

In addition to deaths from the major diseases just discussed, many of those living in the less developed nations are also susceptible to a neglected tropical disease (NTD). This term refers to diseases that receive far less attention than they deserve given their impact. Around 2 billion people around the globe live with these dis- eases, mostly in the less developed nations (Hotez, 2016).

The core problem for those who suffer from NTDs is that wealthy people rarely get them. As a result, nations, pharmaceutical companies, and even non- profits typically have little interest in spending money to develop or distribute

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treatments because most who live with these diseases lack both political power and money to spend on treatments (Hotez, 2016).

The World Health Organization has officially declared 17 diseases as NTDs. The most common are the parasitic diseases ascariasis (which causes malnutrition, wheezing, and cognitive loss in children), trichuriasis (which causes severe bowel diseases), and hookworm disease (which causes iron deficiency and can lead to cog- nitive deficits, malnutrition, and death). All of these diseases make it difficult for children to succeed in school and for adults to function as workers. As a result, these disease lock poor people and nations into poverty. Many of these diseases can be effectively treated, and many have been cured, but much work remains to be done.

Infant Mortality

Like infectious and parasitic diseases, and as Table 4.1 shows, infant mortality is many times higher in the less developed nations than in the more developed na- tions (Population Reference Bureau, 2017). The most common causes of infant mortality in poorer nations are malnutrition and infections (particularly respira- tory infections and diarrheal diseases). Because we examined these factors earlier in this chapter, we focus here on two other important sources of infant mortality: women’s status and infant formula manufacturers.

The Role of Women’s Status The low status of women plays a critical role in infant mortality in less developed nations. In these countries, infant mortality occurs most often among babies born to underfed, overworked mothers, many of whom suffer from untreated illnesses (WHO, Reproductive Health and Research Department, 2004).

These conditions reflect women’s low status. Throughout the less developed nations, girls and women often spend long hours in heavy labor (Messer, 1997). Yet they typically receive less food and less health care (including immunizations) than do boys and men (Kristof and WuDunn, 2010; Messer, 1997). As a result, girls often enter their childbearing years already ill and malnourished—a situation that worsens as pregnancies further stress their bodies and drain their energy.

Similarly, infant mortality is highest among infants born to the youngest or oldest mothers and to infants born less than 18 months after a sibling. This situ- ation occurs most commonly in cultures that expect women to marry at young ages, that judge women’s worth by how many children they have (especially male children), and that restrict women’s access to contraception. In part, these cultural values reflect the economic realities of agricultural life: In agricultural societies, children produce more economic resources than they consume, so a family with many children is more likely to survive than a family with few children. In addi- tion, in the absence of pension systems, individuals can guarantee their security in old age only by having sons given that daughters generally are expected to take care of their husbands’ parents rather than their own. For this reason, it is common for families in some parts of Asia to let girl babies die by giving them less food or medical care, to use medical technologies to identify and then abort female fetuses, or to kill girl babies outright (Kristof and WuDunn, 2010; Zhu, Lu, and Hesketh,

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2009). This situation is discussed in “Ethical Debate: The Ethics of Prenatal Sex Selection,” p. 84.

In sum, research suggests that if women’s social status were higher, they would enter their childbearing years with healthier bodies, would wait longer before having babies, would wait longer between babies, and would have fewer babies in total, with each of these factors lowering the infant mortality rate. For all of these reasons, many researchers and public health workers have suggested that the most effective way to reduce infant mortality is to improve the status of women, thereby increasing their power to make decisions for themselves. This at least partly ex- plains why infant mortality is so much lower in Costa Rica and China than in some other countries at similar levels of development.

Maternal Mortality

Women’s low status plays a similar role in causing maternal mortality. Maternal mortality is now quite rare in the more developed nations but remains the primary cause of death among women of reproductive age in the less developed nations. For example, in Afghanistan 1 of every 32 women dies from childbirth complica- tions compared to 1 of every 4600 women in the United Kingdom (Population Reference Bureau, 2014).

Most commonly, maternal mortality occurs when malnutrition or malaria leaves women anemic, which can lead to hemorrhaging during birth. In addition, in cultures that place low value on women, governments are less likely to invest money on prenatal or maternal care, increasing the risk to any woman who expe- riences complications during childbirth.

Maternal mortality is also more common among the 125 million girls and women in Africa, Indonesia, Yemen, and elsewhere who have experienced female genital cutting (UNICEF, 2013). Typically the clitoris and labia minora are re- moved, and sometimes the labia minora and parts of the labia majora as well. In addition, the sides of the vulva may be stitched together, leaving only a small opening for urine and menstrual fluid to escape. Most commonly, a midwife or other lay healer does the cutting using a razor blade, knife, or piece of broken glass.

Genital cutting is practiced because it is believed in these cultures to make women cleaner, prettier, more fertile, more docile, and healthier. Unfortunately, scar tissue and narrowed vaginal openings can make it difficult for a baby to emerge, causing women to die from hemorrhage. Belief, practices, and laws are changing, however, and rates of female genital cutting have declined over the last 20 years (UNICEF, 2013).

Finally, the risk of maternal mortality is especially high for women who give birth before age 20, after age 35, or more than three times—all situations that are common when women lack access to contraception. In addition, when women lack contraception, they often turn to abortion. Abortion is a technically sim- ple procedure, far safer than childbirth when performed by trained professionals (whether doctors or not) working in sterile conditions with proper tools. In the absence of these conditions, however, women die from infections caused by un- sterile instruments, hemorrhage when instruments pierce the uterus, and poisons

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ingested in hopes of causing an abortion (Sedgh et al., 2007). Nevertheless, most of the less developed nations have restricted or outlawed abortion because of cul- tural traditions, religious beliefs, a desire by political elites to increase population, or political pressure from U.S. anti-abortion forces. Yet a comprehensive global study published in the prestigious medical journal The Lancet found that outlawing abortion has no effect on the number of women who get abortions but greatly increases the number who die from abortions (Sedgh et al., 2007).

Maternal mortality has declined significantly during the past 30 years, primar- ily because of decreases in the number of births per woman and increases in wom- en’s education, income, and access to skilled birth attendants (Hogan et al., 2010). Mortality is now concentrated in countries torn by war (including Afghanistan

The Ethics of Prenatal Sex Selection

Zhang Zhiquan and his wife, Mei, live in a rural village in the People’s Republic of China. Growing up in rural China, they learned early that couples needed sons to prosper and to care for them in their old age. They also learned that sons were essential for passing on the family name, that wives who produced no sons deserved mockery and abuse, and that girls were so useless that in the past many rural families did not even bother to name them. When Mei became pregnant, therefore, they had to decide what they would do if the baby were female. In the past, if they felt unable or unwilling to raise a daughter, their only options would have been to kill the baby or give her up for adoption—choices that some families still make. Now, however, they have one additional option: having a health care worker identify the fetus’s sex through ultrasound or amniocentesis and perform an abortion if the fetus is female.

Half a world away, the same issues of sex preselection and selective abortion arise, although in a different form:

Sharon and James Black live in Denver, Colorado, with their two young daughters. Because they both believe that children need a parent home at the end of the school day, Sharon works only part time as a secretary, and James works two jobs so they can make ends meet. Sharon has just learned she is pregnant again. Although they had only planned on having two children, James always wanted a son with whom he can share his interests in sports and automobiles. Having another child, however, will further strain their finances and make it difficult for Sharon to return to full-time work for several more years. Consequently, continuing the pregnancy does not seem worthwhile unless they know that the fetus is male.

Is prenatal sex selection ethically justified in these cases? Although the circumstances differ enormously, for both families, the birth of a daughter would bring substantial economic hardship. For both families, too, a daughter would enter life unwanted and already having failed to meet her parents’ expectations. In addition, for the Chinese family and possibly (although to a lesser extent) the American family, the birth of another daughter might lower the wife’s status and strain the marriage. Given these circumstances, wouldn’t it be best for all concerned if the families use the available medical technology to determine their fetuses’ sex and abort them if they are female?

For hundreds of thousands of couples in Asia and a growing number in the West, the answer, resoundingly, is yes. In China, for example, 120 boys are born for every 100

ETHICAL DEBATE

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and Ethiopia) and the southern African countries most severely affected by the HIV/AIDS epidemic.

The Role of Infant Formula Manufacturers A final cause of infant mortality in the less developed nations is the use of infant formula. Researchers estimate that 13% of all deaths before age five could be prevented if infants were breastfed during their first six months of life (UNICEF, 2005).

In the less developed nations, several factors contribute to the especially high rates of death and disease among infants who are not breastfed. First, in addition to the inherent nutritional limitations of breast milk substitutes, bottle-feeding itself can expose infants to tremendous risks. Infant formula is typically sold as a powder

females overall (Poston, Conde, and DeSalvo, 2011.). The ratio is considerably more skewed in rural areas and for second births to a couple.

Those who support prenatal sex selection argue that selective abortion causes little harm, whereas the birth of unwanted girls in poorer nations can financially strain families, leave mothers open to ridicule or even physical abuse, and result in child neglect, abuse, or abandonment. Those who oppose prenatal sex selection argue that it does more harm than good because it reinforces the low status of females. Although in rare circumstances families use medical technologies to ensure that their babies are female (such as families with a history of hemophilia, a disease that affects only males), in the less developed nations, prenatal sex selection almost always means selecting males. However, in the more developed nations, the preference for sons has declined substantially or even reversed (Andersson, Hank, and Ronsen, 2006; Edgar et al., 2006).

When families select male fetuses over female fetuses, they proclaim male babies preferable. Moreover, when health care workers help families to select male babies, the workers in essence validate this preference. Finally, when health care workers assist in prenatal sex selection—whether helping families to select males or females—they reinforce the idea that males and females are inherently different. After all, if male and female personalities, interests, and aptitudes were more similar than different, why would families need to choose one over the other?

In sum, to assess the ethics of prenatal sex selection, we need to weigh the potential benefits and costs for families and for society as a whole.

Sociological Questions

1. What social views and values about medicine, society, and the body are reflected in prenatal sex selection?

2. Which social groups are in conflict over this issue? Whose interests are served by allowing prenatal sex selection? By forbidding it?

3. Which of these groups has more power to enforce its view? What kinds of power do they have?

4. What are the intended consequences of permitting prenatal sex selection? What are the unintended social, economic, political, and health consequences of this policy?

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that must be mixed with water and then transferred to a bottle before it can be used. In most of the less developed nations, this water contains dangerous infectious or- ganisms. Those organisms can be killed if the water and bottle are boiled, but many families don’t understand how or why they should do so. Moreover, throughout the less developed nations, many women and children already spend hours each day getting water and firewood and lack the time and energy to get the extra supplies needed to sterilize water and bottles.

Second, infant formula is not free. To cut the costs, families often stretch infant formulas by diluting them with water. Babies fed diluted formula in essence starve to death while filling their stomachs.

Finally, by altering the hormonal levels in a woman’s body, breastfeeding serves as a moderately effective contraceptive. Breastfeeding thus helps women to space out pregnancies and gives each baby a better chance for survival.

Given all the benefits of breastfeeding, why don’t more women in less devel- oped nations breastfeed? Part of the answer lies in traditional cultural beliefs, such as the conviction that children require certain traditional foods for health or that it is unsafe for men to have sex with breastfeeding women (Dettwyler, 1995). Part of the answer lies in practical economic and social issues, such as the difficulty of meshing breastfeeding with paid work. And part of the answer lies with multinational food corporations that continue to active promote bottle-feeding despite international agreements (under the World Health Organization) against the practice. Use of in- fant formula is rising significantly, especially in the growing economies of China and southeast Asia where more women can now afford formula and more regard it as “modern” (Baker et al., 2016).

Respiratory Diseases

Finally, respiratory diseases such as emphysema are also major killers in the less developed nations, just as they are in the more developed nations. As with all disease in the less developed nations, poverty and malnutrition increase individual susceptibility to illness. In addition, long periods spent cooking over open fires in closed rooms expose millions of women to cancer-causing toxins equivalent to smoking several packs of cigarettes daily. Meanwhile, those who live in cities such as Caracas and Calcutta risk their health daily because of pollution from automo- biles and industries.

Unfortunately, in some less developed nations, government officials lack the power to control polluting industries—or even profit from and promote these in- dustries. Equally important, officials in less developed nations sometimes believe that pollution and the attendant morbidity and mortality are short-term costs they must pay to industrialize and improve their nation’s health in the long run.

To these factors must be added the role of tobacco, which is a major cause of respiratory disease, heart disease, and cancer in both less developed and more devel- oped nations (WHO, 2017c). Tobacco use has grown steadily in the less developed nations since 1964, when the U.S. surgeon declared tobacco a cause of lung cancer, U.S. sales of cigarettes plummeted, and tobacco manufacturers (most based in the

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United States) turned to the less developed nations for new markets. Advertisements for tobacco are now ubiquitous in these nations (Savell et al., 2015).

War

The most unnatural cause of death and disease in the less developed nations (and elsewhere) is war. Political and economic instability, combined with environmen- tal degradation, have made the less developed nations particularly vulnerable to war. Wars not only can wipe out a generation of soldiers but also can take astound- ingly high tolls among civilians. For example, during the seven years after coali- tion forces led by the United States invaded Iraq in 2003, around 450,000 Iraqi civilians—many of them women and children—were killed by military forces (Hagopian et al., 2013).

Civilians are killed not only by bombs and guns but also by forced labor; malnutrition after soldiers burn crops, kill farm animals, and force farmers off their lands; and diseases that spread when refugees are forced into overcrowded, unsanitary camps and when soldiers destroy water, sewage, and health care facil- ities. During six years of warfare in Darfur, for example, 80% of those who died were killed not by guns or bombs but by diseases that spread when warfare led to economic, social, and ecological destruction (Olivier and Debarati, 2010).

Survivors, too, pay a huge price, often including both long-lasting disability and the psychological trauma of losing one’s family, community, and work. The traumas are particularly high for victims of mass rape, a common tool of warfare that has been used extensively in recent years; those who survive can find themselves not only infertile or permanently disabled by their injuries but also stigmatized and sometimes abandoned by families and neighbors. Finally, an estimated 300,000 chil- dren in more than 30 less developed nations are serving as soldiers (UNICEF, 2010). Mortality rates are extremely high, as are the health risks experienced by those who survive. These children are exposed to all the horrors and dangers of warfare and to increased risks of malnutrition, disease, injuries from land mines, sexual abuse, and substance abuse, while losing opportunities for education and normal family life that might protect their mental and physical health as adults.

Disasters

The devastation wrought by earthquakes, tsunamis, floods, and other natural disas- ters in the less developed nations is impossible to miss: 200,000 people confirmed dead in 2004 when a tsunami hit Indonesia, another 200,000 killed by a hurricane in Haiti in 2010, more than 60,000 confirmed dead after a 2008 earthquake in China, and so on. In addition to the immediate deaths caused by natural disasters, many more people suffer poor health or even death when disasters kill crops; de- stroy sewer, water, and health care facilities; throw people into poverty; and scatter, disable, or kill health care workers.

Although humans can’t prevent natural disasters, they can greatly reduce—or increase—their toll (Revkin, 2005). Schools, homes, and other structures can be retrofitted or built to withstand most earthquakes at costs far less than the cost of replacing or repairing damaged or destroyed structures. Dams, nuclear power

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plants, and other dangerous structures can be located away from vulnerable flood plains and earthquake zones. And disaster-preparedness programs can be devel- oped to warn people of impending disasters, offer means of escape, and secure public health infrastructures. For example, despite the extraordinary violence of the tsunami and earthquake that hit Japan in 2011, deaths were far lower than they otherwise would have been because the country had prepared so well for natural disasters. However, such preparation requires not only technical knowledge but also both the money and political will to act on that knowledge (Revkin, 2005). The less developed nations are particularly vulnerable to disasters because they lack the necessary funding and often are ruled by small elites who have no real commitment to protecting the citizenry.

The earthquake that struck Haiti in January 2010 illuminates these points. The earthquake’s impact was particularly devastating not only because of its power but also because of the population’s poverty and the government’s corruption. When the earthquake struck, most of the population was already living in poverty, and half in extreme poverty (The New York Times, 2010). Government corruption had siphoned money into politicians’ pockets and away from building hospitals, roads, clean-water systems, and earthquake-proof housing. As a result, many died when buildings were crushed, aid workers couldn’t reach the injured, few hospital beds were available, and vulnerable water systems made it easy for cholera to spread.

Structural Violence

Many of the causes of ill health discussed in this chapter can be summed up under the term structural violence. Structural violence refers to social arrangements that

Whenever children serve as soldiers, they risk terrible injuries, psychological trauma, and of course death.

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are deeply embedded in the politics, culture, or economy of a society and that harm individuals or keep them from reaching their full potential (Farmer et al., 2006, 2013). (See “Key Concepts: Structural Violence,” p. 89). This concept is par- ticularly useful for explaining why poor populations are especially likely to fall ill and for protecting the health of those vulnerable populations.

The case of HIV/AIDS in Rwanda provides a useful example. Most Rwan- dans are extremely poor. Meanwhile, across the social classes, women continue to have far less power than do men. In addition, Rwanda experienced a massive, genocidal war during the 1990s that caused untold numbers of deaths and inju- ries and forced much of the population to flee to refugee camps. All these factors reflect and reinforce structural violence, and have contributed to an epidemic of HIV/AIDS in Rwanda.

As this suggests, effective interventions need to take structural violence into consideration (Farmer et al., 2006). For example, training doctors in the best ways to treat HIV/AIDS will have little effect if few Rwandans can afford to visit them. Instead, it may be more effective to train lay workers to provide basic, low-cost treatment. Similarly, any efforts devoted to reducing poverty in Rwanda would attack structural inequality at its roots and increase the odds that Rwandans could purchase both condoms and HIV/AIDS treatment.

IMPLICATIONS

One of the major threads throughout this chapter is the important role poverty plays in causing illness and death in the less developed nations. Consequently, reducing poverty in these nations should raise them to the health levels found in the more developed nations. Enacting various inexpensive public health measures

Structural Violence

Structural violence refers to social structures and institutions that are embedded in a society’s politics, culture, or economy and that either harm individuals or keep them from reaching their full potential.

Type of Violence Committed by Effects

Visibility of Effects Example

“Ordinary” violence

Individuals Injury, death

Obvious, concrete

Bar fight

Structural violence

Social structures, social institutions, or individuals working on behalf of social structures or institutions

Injury, illness, death, economic harm, social harm

Often hard to recognize

Laws that set the minimum wage too low for families to buy healthy food

KEY CONCEPTS

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could also make a real difference. For example, deaths among children in poor countries have fallen precipitously in the last 20 years primarily because of in- terventions such as distributing insecticide-treated mosquito nets and increasing vaccination rates (UNICEF, 2014).

SUMMARY

1. The more developed nations are nations that have relatively high gross national income per capita and diverse economies composed of many different industries. The less developed nations are those nations with relatively low GNI per capita and relatively simple economies. The least developed nations are the worst-off subset of the less developed nations.

2. Compared with the more developed nations, the less developed nations have higher infant and maternal mortality, lower life expectancies, and a greater burden of infectious and parasitic diseases, especially HIV/AIDS, tuberculosis, diarrheal diseases, and malaria.

3. In a major change from past generations, chronic disease (especially heart disease) is rapidly emerging as a common cause of death in the less and even least developed nations.

4. The main reason for low life expectancy in the less developed nations is chronic malnutrition. Chronic malnutrition occurs most often in undemocratic countries where a few people control most resources. Within countries, malnutrition occurs most often among those groups with the least access to resources—typically poor women and their children. International aid can increase malnutrition when it increases power inequities.

5. HIV/AIDS has hit parts of Africa especially hard, primarily because of poverty. In addition, the epidemic has been stoked by labor migration (which takes men away from their families and increases their use of prostitutes), women’s low status, and concurrent sexual partners (i.e., having more than one long-term sexual partner at a time).

6. Infant mortality is a far more common cause of death in the less developed nations. The most common killers of infants in the less developed nations are malnutrition and infections. In addition, the low status of women and the mass marketing of infant formula by multinational corporations have contributed to infant mortality.

7. Maternal mortality is the primary cause of death among women of reproductive age in the less developed nations. Because of their low status, girls are married off young, bear children before their bodies have matured enough to do so safely, receive too little food to nourish their fetuses or their own bodies, and lack access to birth control or safe abortions.

8. Political and economic instability, combined with environmental degradation, leave the less developed nations particularly vulnerable to war.

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Wars typically kill far more civilians than soldiers, primarily by causing famines and spreading illnesses.

9. The less developed nations are particularly vulnerable to disasters because they lack the necessary economic funds to build earthquake-safe infrastructures and because in many cases they are ruled by small elites who have no real commitment to doing so.

10. Structural violence refers to social structures and institutions that are embedded in a society’s politics, culture, or economy and that either harm individuals or keep them from reaching their full potential.

REVIEW QUESTIONS

1. How does poverty contribute to illness in less developed nations?

2. How do international politics and multinational corporations contribute to illness in less developed nations? How do undemocratic governments contribute?

3. How does the low status of women contribute to maternal mortality in less developed nations? To infant mortality?

4. How are the effects of natural disasters amplified by the political and economic conditions in less developed nations?

CRITICAL THINKING QUESTIONS

1. For the past five years, you have worked as a public health worker in a poor, urban, minority neighborhood in the United States. You have just accepted an exchange agreement to work for three years in Cape Town, South Africa. What parallels will you expect to see between these two settings in terms of the nature and sources of health problems and the best ways for dealing with health problems?

2. Identify the three changes you think would contribute most to improving the health of people in the less developed nations. Justify your choices.

3. Identify three selfish reasons why Americans (individuals, corporations, government, voluntary organizations) should care about illness and death in less developed nations.

4. Use the concept of structural violence to help explain why infant mortality is so much higher in poor nations than in wealthy ones.

PA RT

The Meaning and

Experience of Illness

Chapter 5 The Social Meanings of Illness

Chapter 6 The Experience of Disability, Chronic Pain, and Chronic Illness

Chapter 7 The Sociology of Mental Illness

Our commonsense understandings of the world tell us that illness is a purely biological condition, definable by objectively measured biological traits. As we will see in Part II, however, definitions of illness vary considerably over time and across social groups. In Chapter 5, we explore the social meanings of illness and consider how ideas about the nature and causes of illness have changed historically, from biblical explanations that attributed illness to punishment for sin to modern explanations that attribute illness to risky lifestyles. We also examine how defining something as an illness can act as a form of social control.

Whereas Chapter 5 discusses the meaning of illness in the abstract, Chapter 6 looks at the consequences of chronic illness, chronic pain, and disability for in- dividuals. Beginning with a discussion of how Western society historically has treated those who have chronic illnesses and disabilities, we then consider the modern experience of illness and of chronic pain, including the processes involved in responding to initial symptoms, searching for mainstream or alternative thera- pies, and coming to terms with a changed body and self-image.

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In Chapter 7, we examine parallel questions regarding mental illness. We be- gin by exploring what it means to call something a mental illness. Then we look at how and why mental illness is distributed among social groups; how Western society historically has treated persons with mental illnesses; and how individuals experience mental illness, from initial symptoms to treatment, to social status after treatment.

C H A P T E R

The Social

Meanings of Illness

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LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand how cultural explanations for illness have changed over the centuries.

● Compare the medical and sociological models of illness. ● Assess the impact of medicalization. ● Use and critique the concept of a sick role.

According to Lunesta.com, a website aimed at the general public and run by the company that manufactures the popular insomnia drug Lunesta:

Approximately 20 million adults in the U.S. suffer from insomnia—a medical condition in which difficulty falling asleep and/or staying asleep has a negative impact on the next day. . . . Symptoms [include] difficulty falling asleep, waking up frequently during the night, difficulty returning to sleep, waking up too early in the morning, unrefreshing sleep, daytime sleepiness, [or] difficulty concentrating. . . . [Insomnia] is a serious medical condition that can affect your mind and body [and cause] daytime fatigue, irritability, decreased feelings of wellbeing, decreased ability to concentrate, decreased ability to problem solve, [and] difficulty in making decisions.

To encourage readers to seek (drug) treatment for sleep problems, the website not only stresses the need to seek medical help but also offers suggestions on what to say when seeking help from doctors, how to get information on discounted Lunesta prescriptions, and good web links to national nonprofit organizations (partly funded by pharmaceutical manufacturers) that focus on identifying and treating sleep problems.

Does this seem like a reasonable way to deal with sleep problems—many of which are caused by nonmedical issues such as working odd hours, job stress, an overly firm mattress, or too much late-night television? According to many doc- tors, the answer is yes. Diagnoses with insomnia have skyrocketed in recent years following intensive marketing campaigns for these drugs—even though research suggests that they provide only a few extra minutes of sleep per night but can cause traffic accidents, crippling falls, and amnesia-like episodes in which individuals eat, walk, engage in sex, or perform other activities they would not consciously have chosen (Moloney, Konrad, and Zimmer, 2011).

This raises the question of what we mean when we say something is a disease. In this chapter, we examine the meaning of illness and disease. We look first at how people have explained illness across history and then at the medical and sociolog- ical models of illness. Then we consider how medicine can act as an institution

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of social control, highlighting the process through which behaviors or conditions become defined as illnesses, the consequences of these definitions for individuals and society, and the potential consequences of our growing reliance on genetic explanations for disease.

EXPLAINING ILLNESS ACROSS HISTORY

Throughout history, people have feared illness. To relieve their anxiety and make the world seem less frightening, many have sought explanations for why illness occurs and why it strikes some rather than others. Most often, these explana- tions defined illness as a deserved punishment for sinful or foolish behaviors and blamed individuals for their own illnesses (Brandt and Rozin, 1997; Weitz, 1991). Such explanations provide reassurance by reinforcing people’s belief in a “just world” in which punishment falls only on the guilty (Meyerowitz, Williams, and Gessner, 1987). For example, both the Jewish and Christian Bibles describe leprosy as punishment for sin. As a result, throughout the Middle Ages, Christian society required anyone diagnosed with leprosy to participate in a special mass for the dead, in which a priest would shovel dirt on the individual’s feet to symbolize his or her civil and religious death. From then on, the indi- vidual was legally prohibited from entering public gathering places, washing in springs or streams, drinking from another’s cup, wearing anything other than the special “leper’s dress,” touching anything before buying it, and so on (Richards, 1977:123–124).

By the early 19th century, prescientific ideas about illness had begun to erode as the idea grew—especially among cultural elites—that scientific principles con- trolled the natural order. According to the new scientific thinking, illness occurred when biological forces combined with personal susceptibility. Lacking a concept of germs, doctors argued that illness occurred when persons whose constitutions were naturally weak or had been weakened by unhealthy behaviors came into contact with dangerous miasma, or air “corrupted” by foul odors and fumes. As a result, these new theories blamed illness on unhealthy behavior rather than on immoral behavior.

As the history of cholera shows, however, these new ideas still allowed the healthy to blame the ill for their illnesses. Cholera first appeared in the Western world around 1830, killing its victims suddenly and horrifyingly through overwhelming dehydration brought on by uncontrollable diarrhea and vomiting. Cholera is caused by waterborne bacteria generally transmitted when human wastes contaminate food or drinking water. It most often strikes poor persons because they are the most likely to lack clean water and to be weakened by insufficient food, clothing, or shelter.

To explain why cholera had struck and why it struck the poor especially hard, early 19th-century doctors asserted that cholera could attack only individuals who had weakened their bodies through improper living (Johnson, 2007; Risse, 1988). According to this theory, the poor caused their own illnesses, first by lacking the

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initiative required to escape poverty and then by choosing to eat an unhealthy diet, live in dirty conditions, or drink too much alcohol. Thus, for example, the New York City medical council concluded in 1832 that “the disease in the city is confined to the imprudent, the intemperate, and to those who injure themselves by taking improper medicines” (Risse, 1988:45). Conversely, doctors (and their wealthy patrons) assumed that wealthy persons would become ill only through gluttony, greed, or by “innocently” inhaling particularly noxious air. This theory of illness allowed the upper classes to adopt the new scientific explanations for illness while retaining older moralistic assumptions about ill people and avoid- ing any responsibility to aid the poor or the ill. In sum, instead of believing that immorality directly caused illness, people now believed that immorality left one susceptible to illness.

Despite the tremendous growth in medical knowledge about illness during the past 200 years, popular explanations for illness have remained remarkably sta- ble. Many religious authorities continue to blame illness on sin, and many secular and medical authorities continue to blame illness on poorly chosen (it not nec- essarily sinful) behaviors and attitudes (Brandt and Rozin, 1997). Parents still act as if colds are caused by playing in the rain rather than exposure to viruses, and public health authorities more often focus on urging people to exercise than on addressing the conditions (such as dangerous neighborhoods, lack of gyms, or the need to hold down two jobs) that keep people from exercising. Similarly, in her hugely popular book The Secret, author Rhonda Byrne argues that individuals “attract” health, wealth, sickness, or poverty to themselves simply by thinking about these conditions (Byrne, 2006:130–132). In sum, theories of illness that focus on individual responsibility continue to reinforce existing social arrangements and help us justify our tendency to reject, mistreat, or simply ignore those who are ill.

MODELS OF ILLNESS

But what do we mean when we say something is an illness? The answer is far from obvious. Most Americans are fairly confident that someone who has a cold or cancer is ill. But what about women whose bones have become brittle with age, men who have bald spots, or young boys who have trouble learning, drink excessively, or enjoy fighting? Depending on whom you ask, these conditions and actions may be defined as normal human variations, illnesses, bad character, or bad behavior. As this suggests, defining illness is not a simple task. In this section, we explore how doctors and sociologists approach these issues.

The Medical and Sociological Models of Illness

The medical model of illness refers to what doctors typically mean when they say something is an illness. This medical model is not accepted in its entirety by all physicians, but it is the dominant conception of illness in the medical world. In contrast, the sociological model of illness offers a strikingly different way of

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thinking about what illness means in practice (rather than ideally). This model is most often adopted by sociologists who take a critical approach, and is also some- times adopted by health care workers who share sociologists’ concerns about how social forces affect health and health care. “Key Concepts: Medical and Sociologi- cal Models of Illness,” compares these two models using female sexual dysfunction (FSD), a recently developed and still contentious diagnosis, as an example.

The medical model of illness begins with the assumption that illness is an objective label given to anything that deviates from normal biological functioning (Mishler, 1981). If asked, most doctors would explain that polio is caused by a virus that disrupts the normal functioning of the neurological system; that menopause is a “hormone deficiency disease” that, among other things, impairs the body’s normal ability to regenerate bone; and that men develop urinary problems when

Medical and Sociological Models of Illness

Medical Model Sociological Model

Illness is an objective label: All educated people agree on what is normal and what is illness.

Illness is a subjective category: Educated people sometimes disagree on what should be labeled illness.

Example: Female sexual dysfunction (FSD) is a biological disease characterized by lack of sexual responsiveness.

Example: FSD is a label given to women who are distressed by their lack of sexual responsiveness with their current sexual partner.

Illness is nonmoral: Conditions and behaviors are labeled illness scientifically without moral considerations or consequences.

Illness is a moral category: Conditions and behaviors are labeled illness when they are considered bad or abnormal.

Example: Labeling FSD an illness and labeling individuals as having FSD are neutral biological statements that don’t reflect moral judgments of the condition or individual.

Example: We label lack of sexual responsiveness an illness because we find it disturbing, and we typically look down on those who have FSD.

Illness is an apolitical label: Politics have no impact on who or what is labeled illness.

Illness is a political label: Some groups have more power than others to decide what is an illness and who is ill.

Example: FSD was first identified by doctors through scientific research.

Example: The concept of FSD was promoted by pharmaceutical companies to sell drugs.

Each illness results from a unique biological cause.

Illness results from a combination of social and biological causes.

Example: FSD results from a biochemical imbalance best treated with a drug.

Example: Women’s sexual problems often reflect psychological and interpersonal as well as biological problems.

KEY CONCEPTS

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their prostates grow excessively large and unnaturally compress the urinary tract. By extension, the medical model assumes that each illness has specific features that any doctor can recognize (Mishler, 1981).

In contrast, the sociological model of illness begins with the statement that illness (as the term is actually used) is a subjective label that reflects personal and social ideas about what is normal as well as scientific reasoning (Weitz, 1991). So- ciologists point out that ideas about normality differ widely across both individuals and social groups. A height of 4 feet 6 inches would be normal for a Pygmy man, but not for an American man. Drinking three glasses of wine a day is normal for Italian women but could lead to a diagnosis of alcoholism in American medical circles. In defining normality, therefore, we need to look not only at individual bodies but also at the broader social context.

Moreover, even within a given group, “normality” is a range and not an absolute. The median height of American men, for example, is 5 feet 9 inches, but someone several inches taller or shorter than that is still considered normal. Yet medical authorities routinely decide what is normal and what is illness based not on objective markers of health and illness, but on arbitrary, statistical cutoff points—deciding, for example, that anyone in the 4th percentile for height or the 50th percentile for cholesterol level is ill (Cohen and Cosgrove, 2009; Hadler, 2008).

Similarly, as sociologists note, the process of assigning diagnoses to individuals is far from objective. For example, African American patients with chest pain often receive diagnoses of indigestion, whereas white patients more often receive diagnoses of heart disease. Meanwhile, French doctors often attribute patients’ headaches to liver problems, whereas U.S. doctors more often attribute them to neurological causes (Hoffman and Tarzian, 2001; Nelson, Smedley, and Stith, 2002).

Because the medical model assumes illness is an objective, scientifically determined category, it also assumes that moral judgments play no role in labeling conditions or behaviors as illnesses. Sociologists, on the other hand, argue that illness is inherently a moral category because deciding what is illness always means deciding what is good or bad. When, for example, doctors label menopause a “hormonal deficiency disease,” they label it an undesirable deviation from normal. In contrast, many women consider menopause both normal and desirable, and they enjoy the freedom from tampons and from fear of pregnancy that menopause brings. In the same manner, when we define cancer, polio, or diabetes as illnesses, we judge the bodily changes these conditions produce to be both abnormal and undesirable rather than simply normal variations in functioning, abilities, and life expectancies. (Conversely, when we define a condition as healthy, we judge it to be normal and desirable.)

Similarly, whenever we label someone ill, we suggest there is something un- desirable about that person. By definition, an ill person is one whose actions, abilities, or appearance don’t meet social norms—that is, the expectations within a given culture regarding proper behavior or appearance. Such a person is typically considered less whole and less socially worthy than those deemed healthy. Illness, then, like virginity or laziness, is a moral status: a social condition that we believe indicates the goodness or badness, worthiness or unworthiness, of a person.

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From a sociological standpoint, illness is not only a moral status (such as crime or sin) but also a form of deviance (Parsons, 1951). To sociologists, labeling some- thing deviant does not necessarily mean that it’s immoral. Rather, deviance refers to behaviors or conditions that socially powerful persons within a given culture per- ceive, whether accurately or inaccurately, to be immoral or to violate social norms. We can tell whether behavior violates norms (and therefore whether it’s deviant) by seeing if it results in negative social sanctions. This term refers to any pun- ishment from ridicule to execution. (Conversely, positive social sanctions are rewards that range from token gifts to knighthood.) These social sanctions can be enforced by parents, police, teachers, and peers, as well as doctors. Later in this chapter, we’ll look at some of the negative social sanctions imposed against ill persons.

For the same reasons that the medical model doesn’t recognize the moral aspects of illness labeling, it doesn’t recognize the political aspects of that process. Although doctors sometimes participate actively in these political processes— arguing, for example, that insurance companies should cover treatment for newly labeled conditions such as fibromyalgia—few doctors recognize how politics un- derlie the illness-labeling process in general. In contrast, sociologists point out that any time a condition or behavior is labeled an illness, some groups will benefit more than others, and some groups will have more power than others to enforce the definitions that benefit them. As a result, open political struggles often emerge around illness definitions (a topic we’ll return to later in this chapter). For exam- ple, U.S. vermiculite miners who were constantly exposed to asbestos dust in their work and who now have strikingly high rates of cancer have fought with insur- ance companies and doctors in clinics, hospitals, and the courts to have “asbes- tosis” labeled an illness. Meanwhile, the mining companies and the doctors they employ have argued that no such disease exists and that the high rates of cancer in mining communities are mere coincidences (Schneider and McCumber, 2004).

Finally, the medical model of illness assumes that each illness has not only unique symptoms but also a unique biological cause (Mishler, 1981). Modern medicine assumes, for example, that tuberculosis, polio, and other infectious dis- eases are each caused by a unique microorganism. Similarly, doctors continue to seek limited and unique causes of heart disease and cancer, such as high-cholesterol diets and exposure to toxins. Yet even though illness-causing microorganisms exist everywhere and environmental health dangers are common, relatively few people become ill as a result. By the same token, although cholesterol levels and heart disease are strongly correlated among middle-aged men, many men eat high-cho- lesterol diets without developing heart disease, and others eat low-cholesterol diets but die of heart disease anyway. Belief in unique biological causes discourages medical researchers from asking why individuals respond in such different ways to the same health risks and encourages researchers to search for magic bullets—a term used by Paul Ehrlich, discoverer of the first effective treatment for syphilis, to refer to drugs that almost miraculously prevent or cure illness by attacking one specific etiological factor.

In sum, to sociologists who work from a critical perspective, illness is a social construction, something that exists in the world not as an objective

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condition, but because we have defined it as existing. This doesn’t mean that the virus causing measles does not exist or that it doesn’t cause a fever and rash. It does mean, though, that when we talk about measles as an illness, we have organized our ideas about that virus, fever, and rash in only one of the many possible ways. In another place or time, people might conceptualize those same conditions as manifestations of witchcraft, as a healthy response to the presence of microbes, or as some other illness altogether. To sociologists, then, illness, like crime or sin, refers to biological, psychological, or social conditions subjectively defined as undesirable by those within a given culture who have the power to enforce such definitions.

MEDICINE AS SOCIAL CONTROL

In everyday life, we use the word medicine to refer to the drugs that doctors pre- scribe. But we can also use the word medicine to refer to the world and culture of doctors. For example, we might say that modern medicine is an exceedingly complex enterprise or that modern medicine primarily focuses on treating disease rather than on looking for environmental causes of illness. Even more broadly, sociologists refer to medicine as an institution. Sociologists use the term institu- tion to refer to enduring social structures that meet basic human needs such as the religion and education. When we talk of medicine as an institution, we refer to the world and culture of doctors as well as to the economic, social, and political underpinnings of that world. We might, for example, talk about how the power of medicine as an institution—doctors, hospitals, the medical way of thinking about the world, and so on—has grown over the past century. In addition, sociologists increasingly talk about biomedicine as an institution. Biomedicine refers to the ways in the which medicine, science, and technology often now work together as one social institution—an institution that can increase or reduce the power of medicine as an institution (Clarke et al., 2003, 2010). (For simplicity’s sake, we will primarily use the term medicine in this book.)

One central concept in the sociology of health and illness is the idea that medicine is, among other things, an institution of social control. Social control refers to the formal and informal methods used by a social group to ensure that individuals conform to social norms and to protect the existing balance of power among groups. When we say that medicine is an institution of social control, we are saying that medicine is a basic structure of our society that sometimes serves to “keep people in line.” For example, doctors have the power to decide whether someone is truly ill and deserves sympathy or is simply lazy and should be shunned. In such a situation, doctors act as social control agents: individuals or groups (such as parents and religious leaders) that enforce social norms. “Contemporary Issues: Citizenship and Biomedicine,” p. 103, explores the powerful rule that the institution of biomedicine now plays in deciding who can become a U.S. citizen.

In the next sections, we will see how doctors—as agents of social control— both decide which conditions or behaviors should be labeled illness and press sick people to get well and return to normal social roles.

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Creating Illness: Medicalization

The process through which a condition or behavior becomes defined as a medical problem requiring a medical solution is known as medicalization (Busfield, 2017; Conrad, 2007). For example, during the 19th century, most Americans considered chronic drunkenness to be a sin, but by the mid-20th century many instead considered it a form of mental illness. Similarly, over the last few decades various natural conditions and processes such as uncircum- cised penises, male balding, aging, loss of sexual desire, and pregnancy have all increasingly come to be seen as medical problems (Armstrong, 2000; Conrad, 2007; Hartley, 2006; Rosenfeld and Faircloth, 2005). The term medicalization also refers to the process through which the definition of an illness is broadened. For example, when doctors expanded the definition of osteoporosis to include anyone with low bone density rather than only individuals who had experi- enced unusual bone fractures, the number of persons diagnosed with osteopo- rosis almost doubled (Grob and Horwitz, 2009).

For medicalization to occur, one or more organized social groups must have both a vested interest in medicalization and sufficient power to convince others (including doctors, the public, and insurance companies) to accept their new definition of the situation. It’s not surprising that doctors often promote medicalization, given that it can increase their power, the scope of their practices, and their incomes. For example, during the first half of the 20th century,

CONTEMPORARY ISSUES

Citizenship and Biomedicine

Becoming a U.S. citizen is a long and difficult process. Each year, however, the United States allows some refugees and immigrants to bypass the usual procedures if they are the spouse, parent, or young child of a U.S. citizen. Increasingly, however, the federal government has mandated that individuals must first prove their family relationship through expensive genetic testing (Dove, 2013; Lakhani and Timmermans, 2014).

The government, of course, has both a need and an obligation to prevent immigration fraud. At the same time, relying on DNA testing leads to a different set of problems (Dove, 2013; Lakhani and Timmermans, 2014). Most basically, it enshrines biomedical information as uniquely accurate and meaningful: more important than legal documents, a parent’s sworn statement, or a child’s obvious desire to be reunited with the adults he or she loves. Similarly, it implicitly declares that we are all defined by our genes. In addition, it defines family in narrow terms, omitting stepchildren and adopted children. Yet in many other cultures, it is common for adults to informally adopt nieces, nephews, cousins, or others when parents die or are unable to care for them. This is especially true in the war-torn areas where most current refugees were born. Relying on genetic testing also has the effect of denying legitimacy to polygamous families in which all wives may consider all children born into the family to be their own. Finally, mandated genetic testing can rip apart—rather than unite—families when it reveals that a child is not genetically related to a man long assumed to be his or her father.

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improvements in the standard of living coupled with various public health measures substantially reduced the number of seriously ill children. As a result, the market for pediatricians declined, and their focus shifted from serious illnesses to minor childhood illnesses and well-baby care. Pediatrics thus became less well paid, interesting, and prestigious. To increase their market while obtaining more satisfying and prestigious work, some pediatricians have expanded their practices to include children whose behavior concerns their parents or teachers and who are now defined as having attention-deficit hyperactivity disorder (ADHD) (Conrad, 2007). Doctors have played similar roles in medicalizing crooked noses, obesity, drinking during pregnancy, impotence, and numerous other conditions (Grob and Horwitz, 2009; Loe, 2004).

In other instances, however, doctors have actively opposed medicalization (Swoboda, 2008). By definition, this is the case with any contested illness: dis- tressing and painful symptoms that affected individuals believe constitute an illness even though many doctors disagree. For example, fibromyalgia is characterized by many common symptoms, including pain, dizziness, insomnia, and headache. Moreover, no blood test or x-ray can identify an individual as having fibromyalgia. As a result, many doctors question whether it really is a disease. The same is true for chronic fatigue syndrome and multiple chemical sensitivity, among others. In these cases, consumers often press for medicalization to get validation for their experiences, stimulate research on treatments and cures, and get health and dis- ability insurance coverage for their problems (Barker, 2005, 2008; Conrad, 2007). The rise of the Internet has made it much easier for such consumers to find each other, reaffirm each other’s sense that they suffer from a real illness, and lobby for medicalization.

Managed care organizations (MCOs) also play a major role in battles over medicalization. MCOs (discussed in detail in Chapter 8) are health insurance providers that restrain costs (and ideally improve quality of care) by monitor- ing closely the health services given to patients. MCOs either support or oppose medicalization, depending on which tactic best protects their interests (Conrad, 2007). For example, in the past, MCOs typically rejected requests for gastric- bypass surgeries to help obese patients lose weight, implicitly arguing that obe- sity was a personal rather than a medical issue. More recently, MCOs have started approving these surgeries in hopes of reducing their long-term costs for obesity-related disease.

The final major force behind medicalization is the pharmaceutical industry (Conrad, 2007). The industry has a vested economic interest in medicalization when- ever it can sell a drug as a treatment (Cohen and Cosgrove, 2009; Conrad, 2007; Rothman and Rothman, 2003). For example, in 1985, pharmaceutical company Genentech patented a genetically engineered human growth hormone designed to increase height in children with pituitary gland defects. Such defects, however, are rare. To expand the market for its drug, Genentech sponsored in-school screening programs that identified the shortest 3% of students and then informed the students’ parents that the students might benefit from hormone treatment. That treatment, however, carried significant side effects and only increased height in children with pituitary defects.

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Case Study: Working Together to Medicalize ADHD Successful medicaliza- tion often depends on the interwoven interests and activities of multiple interest groups. The history of ADHD illustrates this process.

Scientists have yet to discover any biological markers (such as viruses or genes) for ADHD (Furman, 2009). As a result, individuals are diagnosed as having ADHD or not based solely on doctors’ assessment of whether the individual is too active, impulsive, or distractible (Conrad, 2007).

The diagnosis only became popular in the 1960s, following a massive adver- tising campaign for Ritalin (methylphenidate). That campaign aimed to convince both doctors and the public that ADHD was a real disease and that Ritalin was a safe treatment. Ritalin is indeed safer than other amphetamines and can improve individuals’ concentration, impulse control, and discipline in the short term. But it may cause addiction, loss of appetite, sleep deprivation, headache, stomachache, and cancer (Davis, 2007; Vastag, 2001), and it does not improve individuals’ chances of graduating high school, holding a job, avoiding drug abuse, or avoiding trouble with the law (Diller, 1998).

Despite these problems, pediatricians proved a ready audience for this marketing campaign, which promised a way to boost their flagging income and prestige. Teachers, too, began recommending that certain students get tested (and treated) for ADHD, in part because the drugs could make students more manageable, and the diagnosis could shift blame for student problems away from the teachers themselves (Diller, 1998).

More recently, those recommendations have turned into near requirements. Over the last 20 years, teachers and schools have faced dramatically increased pressure to maintain or increase their students’ scores on standardized tests. One easy way to do so is to increase the number of students who receive Ritalin or similar drugs. As a result, teachers may press parents to get their children diagnosed and dosed. This is especially true in affluent districts where parents can afford to send their children elsewhere and schools must compete for good students (King et al., 2014). Similarly, parents may seek to have their child diagnosed in hopes that the drugs will improve their children’s grades. In addition, an ADHD diagnosis gives children the benefits federally guaranteed to any children with disabilities, including special educational services and protection against suspension for disciplinary problems related to ADHD (Conrad, 2007).

Around 10% of U.S. schoolchildren—and almost 20% of high school boys— have been diagnosed with ADHD (Schwarz and Cohen, 2013). In addition, diagnoses have spiked among toddlers, even though official definitions of ADHD limit it to children age four and older (Schwarz, 2014).

Unintended Consequences of Medicalization In some circumstances, med- icalization can be a boon, leading to social awareness of a problem, sympathy to- ward those diagnosed with an illness, and the development of helpful treatments. Persons with epilepsy, for example, lead far happier and more productive lives now that their seizures are treated with drugs rather than treated as signs of demonic possession. But defining a condition as an illness does not necessarily improve the social status of those who have that condition. Those who use alcohol excessively,

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for example, continue to experience social rejection even when alcoholism is labeled a disease. Moreover, medicalization also can lead to new problems, which sociologists refer to as unintended negative consequences (Conrad, 2007).

First, once a situation becomes medicalized, doctors become the only experts considered appropriate for diagnosing the problem and defining appropriate responses to it. As a result, the power of doctors increases while the power of other social authorities (including judges, the police, religious leaders, legislators, and teachers) diminishes. For example, now that troublesome behavior by children is increasingly diagnosed as ADHD, parents, teachers, and the children themselves have lost credibility when they disagree with this diagnosis. Similarly, doctors are now given considerable authority to answer questions such as who should receive abortions or organ transplants, how society should respond to drug use, and whether severely disabled infants should receive experimental surgeries, while the authority of religious leaders and family members to answer these questions has diminished.

As this suggests, medicalization significantly expands the range of life experiences under medical control. For example, the natural process of aging is increasingly regarded as a medical condition. Doctors now scrutinize all aspects of the aging body and recommend psychological tests to measure mental decline, hormones to improve virility, cosmetic surgery for wrinkles, and more (Conrad, 2007).

Second, once a condition is medicalized, medical treatment may seem the only logical response to it. For example, if woman battering is considered a medical condition, then doctors need to treat women and the men who batter them. However, if woman battering is considered a social problem stemming from male power and female subordination, then it makes more sense to arrest the men, assist the women financially and emotionally, and work for broader structural changes to improve all women’s status and options.

Third, when doctors define situations in medical terms, they reduce the chances that these situations will be understood in political terms. For example, China, Pakistan, and other countries have removed political dissidents from the public eye by committing them to mental hospitals. By so doing, these govern- ments discredited and silenced individuals who might otherwise have offered powerful dissenting voices. In other words, medicalization allowed these govern- ments to depoliticize the situation: to define it as a medical rather than political problem.

Fourth, and as the examples of China and Pakistan illustrate, medicalization can justify involuntary treatment. Yet treatment sometimes harms more than it helps. For example, since the 1980s, U.S. doctors have legally forced small numbers of women to submit to cesarean deliveries, in which babies are surgically removed from their mothers’ uteruses rather than delivered naturally through the vagina (Paltrow and Flavin, 2013; Roth, 2003). In these cases, doctors argued successfully that childbirth is a dangerous medical condition rather than a natural process, that doctors are better qualified than pregnant women to judge fetuses’ needs, and that fetuses’ right to health is more important than women’s right to control their own bodies. Yet the rate of cesarean section in the United States is twice that

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recommended by the World Health Organization, suggesting that doctors are far too ready to perform this potentially life-threatening surgery. “Ethical Debate: Medical Social Control and Fetal Rights,” p. 108, explores how the growing ac- ceptance of the idea of “fetal rights” is affecting the lives of pregnant women.

Medicalization and the “Potentially Ill” In addition to creating new ill- nesses, medicalization has also led to labeling increasing numbers of individuals as “potentially ill” (Boyer and Lutfey, 2010; Conrad, 2005; Scott, Wood, and Gray, 2005). The potentially ill are individuals identified as having an above-average risk of illness, whether because of age, stress level, tobacco use, family history, med- ical test results, or other factors.

The risks faced by the potentially ill vary substantially. Some learn that they carry a gene guaranteed to cause a fatal disease. Many more, however, learn that they have a condition such as high cholesterol that may increase their risk of illness. The numbers of such individuals continues to increase as corporations de- velop more tests for risk factors and as doctors (often reimbursed per test) adopt such tests. Similarly, the ranks of the potentially ill have expanded as pharmaceuti- cal companies have encouraged both doctors and consumers to expand their ideas about health risks and to adopt treatments for those risks. For example, pharma- ceutical companies have worked not only to broaden the definition of osteoporo- sis but also to create a new category, osteopenia, for those at risk of osteoporosis. Because osteoporosis refers to the risk of bone fractures caused by low bone density, osteopenia is essentially the risk of a risk of a health problem.

As this suggests, the health benefits of learning that one is potentially ill depend on the magnitude of the identified risk and the effectiveness of available treatments (Scott et al., 2005). Those benefits, however, must also be balanced against the psychological distress caused when people without any symptoms learn that illness might strike at any moment (Marteau and Richards, 1996). In addition, some of these individuals experience the stigma of illness without any of the benefits that those who have illnesses may receive such as legal protection from discrimination.

The Rise of Demedicalization The problems inherent in medicalization have fostered a (much smaller) countermovement of demedicalization (Conrad, 2007). A quick look at medical textbooks from the late 1800s reveals many “dis- eases” that no longer exist. For example, 19th-century medical textbooks often included several pages on the health risks of masturbation. One popular textbook from the late 19th century asserted that masturbation caused “extreme emacia- tion, sallow or blotched skin, sunken eyes, . . . general weakness, dullness, weak back, stupidity, laziness, . . . wandering and ill-defined pains,” as well as infertility, impotence, consumption, epilepsy, heart disease, blindness, paralysis, and insanity (Kellogg, 1880:365). Today, however, medical textbooks describe masturbation as a healthy part of human sexuality.

Like medicalization, demedicalization often begins with lobbying by consumer groups. For example, medical ideology now defines childbirth as an inherently dangerous process, requiring intensive technological, medical assistance. Since the 1940s, however, some American women have attempted to redefine childbirth as a

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generally safe, simple, and natural process and have promoted alternatives ranging from natural childbirth classes to hospital birthing centers, to home births assisted only by midwives. Similarly, and as described in Chapter 7, activists have at least partially succeeded in redefining attraction to members of one’s own sex from a pathological condition to a normal human variation. More broadly, innumerable books, magazines, television shows, and popular organizations now exist that focus on teaching people to care for their own health rather than (or in addition to) relying on medical care.

Genetic Research and Social Control

The potential for medicine to act as a form of social control continues to grow as scientists learn more about human genes—and as the public increasingly be- lieves that genes hold the key to health and illness. The shift toward increasingly defining genes as the cause of human disease, behavior, and differences is known as geneticization (Shostak, Conrad, and Horwitz, 2008; Weiner). Geneticization is a form of medicalization.

Medical Social Control and Fetal Rights

In October 2006, 20-year-old Tiffany Hitson gave birth to a healthy baby girl. The next day, after traces of marijuana and methamphetamine were found in her baby during routine testing, Hitson was arrested for “chemically endangering” her child. Hitson spent most of the next year in state prison.

Tiffany was not alone. Over the last decade, hundreds of pregnant women— most poor and nonwhite—have faced criminal sanctions or been forced to endure medical treatments (Eckholm, 2013). These actions reflect a growing tendency among doctors, lawyers, and the general public to view mother and fetus as separate beings, with separable and sometimes conflicting rights, and to see the fetus rather than the mother as obstetricians’ primary patient (Roth, 2003). Given that doctors have an ethical and legal obligation to protect children from parents who abuse them, should doctors have a similar obligation to protect fetuses even if it means superseding mothers’ wishes?

Those who argue in favor of medical intervention find it illogical to protect children from bodily harm after birth but to deny them protection that might ensure their health before birth. Children born prematurely, addicted to drugs, or with birth defects because their mothers did not follow medical advice may lead short, painful lives or may survive with mental or physical disabilities. In addition, caring for these children costs hospitals and taxpayers money. Those costs alone, one could argue, give the medical and legal systems the right to intervene when women endanger their fetuses.

Others, however, have raised several objections to placing fetal rights above mothers’ wishes. First, critics question whether medical intervention really is necessary. For example, almost all well-structured research studies on mothers’ drug use during pregnancy have found that it causes little if any long-term harm to children (Roth, 2003; Singer et al., 2002). Second, drug withdrawal also can endanger fetuses, as can threats of legal sanctions that discourage pregnant women from seeking health care

ETHICAL DEBATE

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Genes affect health in two ways: by causing “true” genetic diseases and by increasing individuals’ predisposition to develop disease. True genetic diseases such as hemophilia only occur if an individual has a specific gene (Williams and Sternthal, 2010). Although doctors can’t cure these diseases, genetic testing does provide affected individuals with the opportunity to learn whether they, their children, or (for pregnant women) their fetuses carry a disease-causing gene (Annas and Elias, 2013).

Individuals who learn through testing that they are not at risk certainly benefit by gaining peace of mind and the ability to plan their futures. Others, though, learn that they are guaranteed to eventually develop a genetic disease, a prospect that some find overwhelming (Halpin, 2018; Marteau and Richards, 1996). It is hard, for example, to imagine how it can help individuals to learn at age 21 that by their forties they will develop Huntington’s disease, a devastating neurological disorder that invariably causes progressive insanity, total disability, and death.

Even these individuals, however, may gain some options and benefits. They can commit to living life to the fullest, make wills, or otherwise plan for their futures. They also can choose to avoid becoming pregnant, to abort any fetuses

altogether. Third, opponents argue that doctors can’t necessarily make better decisions than mothers because they can’t understand fully the circumstances in which mothers make those decisions. For example, many women continue to use drugs during pregnancy only because they can’t obtain access to treatment programs, which usually are expensive, have long waiting periods, and won’t accept pregnant women.

Finally, some argue, the concept of fetal rights puts an undue burden on women (Roth, 2003; Toscano, 2005). Although we require parents to guard their children’s health and welfare, we don’t require them to donate kidneys, bone marrow, or even blood for their children’s sake. Why, then, should we require women—and only women—to protect their fetuses? After all, when fathers drink alcohol, use illicit drugs, smoke cigarettes, or work in legal or illegal chemical laboratories, both sperm and fetuses can be harmed, but no man has ever been charged with fetal abuse. This has led some to conclude that the idea of “fetal” rights is aimed more at controlling women rather than at protecting children.

Sociological Questions

1. What social views and values about medicine, society, and the body are reflected in the concept of “fetal rights”? Whose views are these?

2. Which social groups are in conflict over this issue? Whose interests are served by promoting fetal rights? Whose interests are harmed?

3. Which of these groups has more power to enforce its view? What kinds of power do they have?

4. What are the intended consequences of this policy? What are the unintended social, economic, political, and health consequences of this policy?

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that carry the defect, or to continue a pregnancy to term, knowing that the fetus carries the defect and hoping that this foreknowledge will better prepare them for the birth of an ill or disabled child. Finally, they can try to have a healthy child who is biologically theirs by surgically removing the woman’s eggs from her body, mixing them with the man’s sperm in the laboratory, having a doctor test the resulting fetuses for genetic defects, and implanting only nondefective fetuses in the woman’s uterus. This strategy is rare because the physical, financial, and psychological costs are extremely high, and the odds of success are low.

In most cases, however, instead of directly causing disease, genes merely increase the probability of disease. In these cases, disease occurs when genes combine with en- vironmental factors in a process known as an epigenetic effect (Annas and Elias, 2013; Landecker and Panofsky, 2013). For example, stressful conditions can “turn on” illness-causing genes and weaken the effectiveness of illness-preventing genes, thus increasing risks of depression, heart disease, and other illnesses (Shanahan, Bauldry, and Freeman, 2010). This explains why identical twins may not get the same genetic disease, even though their genes are identical (Roberts et al., 2012).

Genetic testing for this second sort of “genetic” disease can benefit individuals if it motivates those who test positive to take potentially health-preserving actions. For example, women who learn they carry the BRCA-1 gene, and thus have an increased risk of breast cancer, might choose to adopt a low-fat diet or have their breasts removed prophylactically.

On the other hand, genetic problems can rarely be surgically corrected (Wade, 2010). Moreover, genetic tests can’t tell how soon or how severely an individual with a particular gene will contract a given disease. Increasingly, too, tests are iden- tifying genetic anomalies whose effects, if any, are unknown. As a result, individuals often must make life plans with little knowledge of what their futures (or their fetuses’ futures) will be like.

At the same time, individuals identified through genetic testing as having or being at high risk for illness run considerable high risk of discrimination. Although federal law prohibits discrimination in employment or health insurance based on genetic test results, it does not forbid discrimination in life insurance, long-term care insurance, education, or other sectors (Zhang, 2017). And, of course, many will face discrimination even when it is illegal (Council for Responsible Genetics, 2001).

Social Control and the Sick Role

So far, we have looked at how medicine functions as an institution of social control by defining individuals as sick or defective. Medicine can also work as an institu- tion of social control by pressuring individuals to abandon sickness, a process first recognized by Talcott Parsons (1951).

Parsons was one of the first and most influential sociologists to recognize that illness is deviance. From his perspective, when people are ill, they can’t perform the social tasks normally expected of them. Workers stay home, homemakers tell their children to make their own meals, students ask to be excused from exams. Because of this, either consciously or unconsciously, people can use illness to evade their social responsibilities. To Parsons, therefore, illness threatened social stability.

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Parsons also recognized, however, that allowing some illness can increase social stability. Imagine a world in which no one could ever “call in sick.” Over time, production levels would fall as individuals succumbed to physical ailments because they were denied needed recuperation time. Morale, too, would fall while resent- ment would rise among those forced to perform their social duties day after day without relief. Illness, then, acts as a kind of pressure valve for society—something we recognize when we speak of taking time off work for “mental health days.”

From Parsons’s perspective, then, the important question was how did soci- ety control illness so that it would increase rather than decrease social stability? His emphasis on social stability reflected his belief in the broad social perspective known as functionalism. Underlying functionalism is an image of society as a smoothly working, integrated whole, much like the biological concept of the hu- man body as a homeostatic environment. In this model, social order is maintained because individuals learn to accept society’s norms and because society’s needs and individuals’ needs match closely, making rebellion unnecessary. Within this model, deviance—including illness—is usually considered dysfunctional because it threatens to undermine social stability.

Defining the Sick Role Parsons’s interest in how society allows illness while minimizing its impact led him to develop the concept of the sick role. The term refers to social expectations regarding how society should view sick people and how sick people should behave. According to Parsons, the sick role as it currently exists in Western society has four parts. First, the sick person is considered to have a legitimate reason for not fulfilling his or her normal social role. For this reason, we allow people to take time off from work when sick rather than firing them for malingering. Second, sickness is considered beyond individual control, something for which the individual is not held responsible. This is why, according to Parsons, we bring chicken soup to people who have colds rather than jailing them for stupidly exposing themselves to germs. Third, the sick person must recognize that sickness is undesirable and work to get well. So, for example, we sympathize with people who strive to recover from illness and question the motives of those who seem to revel in the attention illness brings them. Finally, the sick person should seek and follow medical advice. Typically, we expect sick people to follow their doctors’ recommendations regarding drugs and surgery, and we question the wis- dom of those who don’t.

Parsons’s analysis of the sick role moved the study of illness forward by high- lighting the social dimensions of illness, including identifying illness as deviance and doctors as agents of social control (Shilling, 2002). It remains important partly because it was the first truly sociological theory of illness. Parsons’s research also has proved important because it stimulated later research on interactions between ill people and others. In turn, however, that research has illuminated the weak- nesses of the sick role model.

Critiquing the Sick Role Model Much recent sociological writings on illness— including this textbook—have adopted a conflict perspective rather than a func- tionalist perspective. Whereas functionalists envision society as a harmonious whole

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held together largely by socialization, mutual consent, and mutual interests, those who hold a conflict perspective argue that society is held together largely by power and coercion as dominant groups impose their will on others. Consequently, whereas functionalists view deviance as a dysfunctional element to be controlled, conflict theorists view deviance as a necessary force for social change and as the conscious or unconscious expression of individuals who refuse to conform to an oppressive society. Conflict theorists, therefore, have stressed the need to study not only deviants but also social control agents.

The conflict perspective has helped sociologists identify the strengths and weaknesses in each of the four elements of the sick role model (see “Key Con- cepts: Evaluating the Sick Role Model”). That model declares that sick persons are not held responsible for their illnesses. Yet, as we saw earlier in this chapter, society often does hold individuals responsible for their illnesses (Freidson, 1970). In addi- tion, ill persons are not always considered to have a legitimate reason for abstaining from their normal social tasks. Certainly, no one expects persons with end-stage cancer to continue working, but what about people with arthritis or those labeled malingerers because they can’t obtain a diagnosis after months of pain, increasing disability, and visits to doctors (Glenton, 2003; Ziporyn, 1992)?

Other aspects of the sick role model are equally problematic. The assumption that individuals will attempt to get well fails to recognize that much illness is chronic and by definition is not likely to improve. Similarly, the assumption that sick people will seek and follow medical advice ignores the many people who lack access to medical care or who can’t afford to take time off from work or purchase medications when ill. In addition, it ignores the many persons, especially those with chronic rather than acute conditions, who have found mainstream health care of limited benefit and who therefore rely mostly on their own experience and knowledge and that of other nonmedical people. Similarly (and understandably), it could not anticipate the ways the Internet has enabled lay people—both sick and well—to seek health information on their own and occasionally challenge or ignore medical advice as a result (Shilling, 2001). Finally, the concept of a (singular)

Evaluating the Sick Role Model

Elements of the Sick Role Model Fits Well Model Fits Poorly

Legitimate reason for not fulfilling obligations

Appendicitis, cancer Undiagnosed chronic fatigue

Individual not held responsible

Measles, hemophilia Herpes, lung cancer

Individual should strive to get well

Tuberculosis, broken leg Diabetes, epilepsy

Individual should seek medical help

Strep throat, syphilis “24-hour flu,” cold

KEY CONCEPTS

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sick role ignores how sex, ethnicity, age, and social class affect the response to illness and to ill people (Flurey et al., 2018). For example, women are both more likely than men are to seek medical care when they feel ill and less likely to have their symptoms taken seriously by doctors (Council on Ethical and Judicial Affairs, 1991; Thompson et al., 2016).

In sum, the sick role model is based on a series of assumptions about both the nature of society and the nature of illness. In addition, the sick role model con- fuses the experience of patienthood with the experience of illness (Conrad, 1987). The sick role model focuses on the interaction between the ill person and the mainstream health care system. Yet interactions with the medical world form only a small part of the experience of living with illness or disability, as the next chapter shows. For these among other reasons, research using Parsons’s conception of the sick role has declined over time.

IMPLICATIONS

The language of illness and disease permeates our everyday lives. We routinely talk about living in a “sick” society or about the “disease” of violence infecting our world.

This metaphoric use of language reveals the true nature of illness: behaviors, con- ditions, or situations that powerful groups find disturbing and believe stem from in- ternal biological or psychological roots. In other times or places, the same behaviors, conditions, or situations might have been ignored, condemned as sins, or prosecuted as crimes. In other words, illness is both a social construction and a moral status.

In many instances, using the language of medicine and placing control in the hands of doctors offers a more humanistic option than the alternatives. Yet, as this chapter has demonstrated, medical social control also carries a price. The same sur- gical skills and technology for cesarean sections that have saved the lives of so many women and children now endanger the lives of those who have cesarean sections unnecessarily. At the same time, forcing cesarean sections on women potentially threatens women’s legal and social status. Similarly, the development of tools for genetic testing has saved many individuals from the anguish of rearing children doomed to die young and painfully but has cost others their jobs or health insurance.

In the same way that automobiles have increased our personal mobility in exchange for higher rates of accidental death and disability, adopting the language of illness and increasing medical social control bring both benefits and costs. These benefits and costs will need to be weighed carefully as medicine’s technological abilities grow.

SUMMARY

1. Topics in the sociology of health, illness, and health care include the nature of the health care system, how social forces promote health and illness, the experience of living with illness or disability, and the status, power, training, and values of health care providers.

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2. Throughout history, explanations for illness have commonly blamed ill persons for their illnesses. Such explanations encourage policy makers to ignore how social and environmental factors can foster illness.

3. Illness is a social construction—not something that simply exists in the world as an objective condition, but something that exists because we have defined it as existing. To sociologists, the term illness refers to biological, psychological, or social conditions that are subjectively defined as undesirable by those who have the power to enforce their definitions.

4. Illness is a moral status and a form of deviance. We label individuals ill when they don’t meet our social norms for behavior, ability, or appearance.

5. The medical model of illness assumes that illness is an objective label, applied scientifically, without moral judgment or political bias. That model also assumes that each illness is caused by unique biological forces.

6. The sociological model of illness regards illness as a social construction, a moral category, and a political label, and emphasizes that what is labeled illness changes over time and space.

7. Medicine is an institution of social control. The institution of medicine acts as social control whenever it defines behaviors and conditions as deviant and pressures individuals to seek health care and strive to get well.

8. The process through which a condition or behavior becomes defined as an illness requiring a medical solution is known as medicalization; the reverse process is known as demedicalization. Four groups that often play prominent roles in fights over medicalization are doctors, consumers, the pharmaceutical industry, and managed care organizations.

9. Medicalization can reduce stigma, increase social awareness, and encourage medical research. It can also cause unintended negative consequences, such as increasing the power of doctors at the expense of other social groups, depoliticizing dissent, and justifying medical—and only medical—treatment.

10. Contested illnesses are combinations of distressing and painful symptoms that affected individuals believe constitute an illness even though many doctors disagree. Examples include fibromyalgia and multiple chemical sensitivity.

11. Genetic research and testing have increased the potential for medicine to act as a form of social control, especially because of geneticization: the shift toward assuming that genes cause human disease, behavior, and differences. Genetic testing brings both benefits and problems to individuals and society.

12. The “potentially ill” are individuals identified as having an above-average risk of illness, whether because of age, stress level, tobacco use, family history, medical test results, or other factors.

13. The sick role model refers to social expectations regarding how society should view sick people and how sick people should behave. The sick role has four parts. First, sickness is considered beyond individual control. Second, sick persons are considered to have legitimate reasons for not

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fulfilling their normal social roles. Third, sick persons are expected to recognize that sickness is undesirable and are therefore expected to work to get well. Finally, the sick role assumes that sick persons should seek and follow medical advice.

14. Critics of the sick role model challenge each of the four parts of that model. They note that the model best fits acute rather than chronic illness, and they suggest that the model confuses the experience of being a patient with the much broader experience of illness.

REVIEW QUESTIONS

1. What does it mean to say that illness is a social construction and a moral status?

2. How have explanations for illness changed over time, and how have explanations for illness blamed ill people for their illnesses?

3. What is the medical model of illness, and what are some of the problems with that model?

4. What is medicalization, why does it occur, and what are some of its consequences?

5. Who are the potentially ill? What are the consequences of being labeled potentially ill?

6. How can genetic research and testing lead to social control? What is geneticization?

7. What is the sick role model, and what are some of the problems with that model?

CRITICAL THINKING QUESTIONS

1. Do the four characteristics of the “sick role” apply to persons who have high cholesterol but no known evidence of heart disease? Do they apply to persons who learn that they have a gene that carries with it a high chance of developing breast cancer? Explain your answers.

2. Psychiatrists apply the diagnosis of premenstrual dysphoric distress syndrome to women who each month experience depression and anger before menstruating. How might women benefit from psychiatry’s decision to label this condition a disease? How might women be harmed by it?

3. Researchers have identified a gene that, if present, indicates that a person has a significant risk of developing Alzheimer’s disease at a young age. Alzheimer’s disease causes people to gradually lose their memory and mental abilities. Imagine that you are a family practice doctor. To a concerned patient provide two arguments for and two arguments against getting tested for the gene.

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C H A P T E R

The Experience of

Disability, Chronic Pain,

and Chronic Illness

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LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Critique the medical and sociological models of disability. ● Describe the nature and distribution of disability and chronic pain. ● Understand how individuals who experience disability, pain, or illness

respond to their diagnoses. ● Analyze how individuals who experience disability, pain, or illness manage

their health care. ● Describe how individuals who experience disability, pain, or illness manage

or fight against stigma.

Shortly before entering seventh grade, Andrea Avery learned that the intermittent pain, stiffness, and weakness she had been experiencing was caused by rheumatoid arthritis. In her recent memoir, she writes:

My mom and I had talked about how I should handle the unpredictable arthritis in my first year with it. My mother had sent letters to the school telling them that I would be the one to indicate when I could or couldn’t do something.

It didn’t work out that way:

“You’ll change for PE every day, Ms. Babuska said [to the class], and having your period or cramps is no excuse. . . . The only way you’ll be excused from participation is if you have a valid medical excuse, like Andrea.” There it was: the orchestra-hit sound effect, all violins, I have always heard deep inside my ears when I experience mortification. She turns to me. “It’s a shame your body is falling apart at such a young age,” she said.

My eyes stung and my throat closed and my stomach roiled and I had always been proud of never crying or throwing up in school and I wasn’t sure which one was about to happen, so I stood up and crossed the gym and lurched out of the room. I didn’t cry and I didn’t vomit. Worse: I was silent. (Avery, 2017:44)

Some years later, Andrea found herself sitting with a girlfriend at a bar with her legs—now permanently bent at right angles by arthritis—hidden by the tablecloth

Two boys in jean jackets approached us. The one with the pompadour and the tiny, angry rock-and-roll pins on his lapel seemed to like me. I got up to go to the bathroom, unfolding my rigid bent legs from under the table. “Wait, [he said]. Why are you walking like a gimp? Are you a gimp? . . .” I replied, “Why are you acting like an asshole,” Are you an asshole?” (Avery, 2017:161, 178)

Andrea’s story illustrates the social as well as medical struggles faced by indi- viduals who live with chronic illness, pain, and disability. In this chapter, we begin

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by exploring the meaning, history, and distribution of disability. Then we discuss chronic pain, which falls on the border between disability and illness. Finally, we look broadly at the experience of chronic illness, pain, and disability, including the search for an accurate diagnosis, for treatments that preserve one’s quality of life, and for a coherent and positive sense of self.

UNDERSTANDING DISABILITY

Defining Disability

As explained in Chapter 5, the meaning of the term illness is far from obvious. The same is true for the term disability. Typically, when people think about dis- ability, they think of it as something wrong—a deficit—within an individual mind or body that should be cured if possible. This way of thinking about disability is referred to as the medical model of disability because it is common (although not universal) among doctors.

At first glance, the medical model of disability seems perfectly reasonable. After all, isn’t a disability something that an individual has, a defect in his or her body? According to many people with disabilities, the answer is no. Instead, they argue, their disabilities primarily stem not from their physical differences but from the way others respond to those differences and from the choices others have made in constructing the social and physical environment. For example, a man whose energy waxes and wanes unpredictably during the day might be able to work 40 hours per week on a flexible schedule but not within a rigid 9-to-5 schedule. Similarly, a woman who uses a wheelchair might find it impossible to work in an office where furniture fits only persons who walk and are of average height, but she might have no problems in an office with more adaptable furniture. Disability activists argue that this is not a matter of providing special benefits for people with disabilities but a matter of compensating for the unacknowledged benefits that existing arrangements offer those who walk, such as chairs to sit in, stools for reaching high shelves, and carpeted floors that make walking easier but wheeling more difficult.

This approach reflects a sociological model of disability in its emphasis on social forces and public issues rather than on individual physical variations and troubles. In the rest of this chapter, the term disability refers to restrictions or lack of ability to perform activities resulting largely or solely from either (1) social re- sponses to bodies that fail to meet social expectations or (2) assumptions about the body reflected in the social or physical environment.

These two models of disability—the medical model and the more sociolog- ical model used by disability activists—have strikingly different implications. As Paul Higgins (1992:31) notes,

To individualize disability [as the medical model does] is to preserve our present practices and policies that produce disability. If disability is an internal flaw to be borne by those “afflicted,” then we don’t question

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much the world we make for ourselves. Our actions that produce disability go unchallenged because they are not even noticed.

Individualizing disability therefore exemplifies the broader process of blaming the victim, through which individuals (such as people with disabilities) are blamed for causing the problems they experience. In contrast, the sociological model of disability challenges us to look at disability from a decidedly different perspective. If we conclude that the problem resides primarily in social attitudes and the built environment, then we can solve the problem most efficiently by changing attitudes and environments rather than by “rehabilitating” people with disabilities.

People with Disabilities as a Minority Group

When we start thinking of disability as primarily a result of social attitudes and built environments rather than of individual deficiencies, strong parallels emerge between people with disabilities and members of minority groups. The term minority group refers to any group that is considered inferior and subjected to dif- ferential and unequal treatment and therefore defines itself as a group with a shared experience of discrimination.

Few would argue with the assertion that we divide disabled and nondisabled people from each other based on physical characteristics. But can we also argue, as the definition of a minority group requires, that people with disabilities are con- sidered inferior and are subject to differential and unequal treatment?

Unfortunately, yes. Even a cursory look reveals widespread prejudice and dis- crimination against people with disabilities. Prejudice refers to unwarranted sus- picion, dislike of, or disdain toward individuals because they belong to a particular group, whether defined by ethnicity, religion, or some other characteristic. Preju- dice toward people with disabilities is obvious: Throughout history, most societies have defined those who are disabled as physically or even morally inferior and have considered disabilities a sign that either the individual or his or her parents behaved sinfully or foolishly (Albrecht, 1992).

Prejudice typically expresses itself through stereotypes, or overly simplistic ideas about members of a given group. Nondisabled people typically stereotype disabled people as bitter, menacing, and unattractive or as asexual, dependent, mentally incompetent, and pitiable (Basnett, 2001; Ryan et al., 2005; Nario- Redmond, 2010). Ironically, because medical training especially values quick, technological cures, doctors may be especially likely to develop negative attitudes toward people who live with long-standing disabilities (Basnett, 2001). (Medical culture is discussed more fully in Chapter 11.)

Stereotypes about people with disabilities are reflected and reinforced in the popular media (Chivers and Markotic, 2005). In book and film characters from Captain Hook in Peter Pan to Freddie Krueger in Nightmare on Elm Street, the media have equated physical deformity with moral deformity. The media also often portray disabilities as pitiful and thus something to be avoided at all costs (as when Jake in the film Avatar chooses to leave his entire life and uni- verse behind for the chance to walk again, even if in an alien body). Although

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contemporary media sometimes do present more positive images such as stories about people with disabilities who have “heroically” compensated for their phys- ical disabilities, who have chosen to live “saintly” lives, or whose innocence can help the rest of us learn to live better lives (as in Riding the Bus with My Sister, for instance), these stories also typically ignore the social nature of disabilities and instead offer simplistic stories about individual character. Exceptions to these rules—films such as The Fault in Our Stars and television shows such as Glee and Game of Thrones—remain rare, although they have become far more common in recent years.

All too often, prejudice against persons with disabilities results in discrimina- tion: unequal treatment grounded in prejudice. As recently as the first decades of the twentieth century, American laws forbade those with epilepsy, leprosy, Down syndrome, and other conditions from marrying and mandated their institutional- ization or sterilization (Nielsen, 2012; Trent, 2005). Discrimination continues into the present day. In a national survey conducted in 2010, almost half of people with disabilities reported encountering job discrimination, most often in the form of lower pay for the same work or being considered ineligible for a job because of their disability (Harris Interactive, 2010).

To fit the definition of a minority group, however, members of a group not only must experience prejudice and discrimination but also must believe that they belong to a group that shares a common experience. In fact, 79% of people with disabilities report feeling a sense of community with other such individuals (Harris Interactive, 2010).

In the United States, laws now offer at least some protection against discrim- ination for people with disabilities. Currently, the federal Education for All Hand- icapped Children Act requires school districts to educate all children regardless of disability in the least restrictive environment feasible. In addition, the Americans with Disabilities Act (ADA) outlaws discrimination and requires accessibility in employment, public services, and public accommodations (including restau- rants, hotels, and stores). Still, disabled persons are much more likely than others to live in poverty, to lack employment, and to face barriers to receiving quality health care (Gostin, 2015).

The Social Distribution of Disability

According to U.S. government researchers, some 15% of noninstitutionalized per- sons living in the United States have a disability (National Center for Health Statistics, 2017a). These researchers define disability as a chronic health condition that makes it difficult for individuals to perform activities considered appropriate for persons of a given age—play and study for children, work for adults, or basic activities such as shopping and dressing for elderly adults.

The proportion of the U.S. population living with disabilities has grown sig- nificantly over time. A few decades ago, most people with paraplegia, babies born prematurely, persons with serious head injuries, and soldiers with major wounds died quickly. Now most live, although often with serious disabilities. For example,

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because of advances in body armor and medical care, far fewer U.S. soldiers have died of wounds suffered in Iraq and Afghanistan than in previous wars, but far more have survived with brain damage and amputated limbs (Glasser, 2005). In addition, average survival times for various common chronic conditions such as hypertension and cardiovascular disease have increased, leaving more people living with disabilities. Finally, as the proportion of the population older than age 65 has increased—and in the absence of meaningful attempts to remove the social and physical barriers that can prevent individuals from living independent lives—so has the proportion living with disabilities.

Table 6.1 shows the distribution of disability across the population measured by limitations in “basic life activities” such as shopping, dressing oneself, or work- ing (for those under age 65). Sex also predicts disability, with women significantly more likely than men to report activity limitations (for reasons discussed in Chap- ter 3). Income is also directly related to disability: Disability is most common among the poor and becomes less common as income rises. Finally, ethnicity also affects rates of disabilities, largely because of its relationship to poverty. According to official statistics, Asian Americans have the lowest risk, and African Americans the highest risk. (It is likely that Native Americans are also at high risk, but data are not available.)

Percentage of Americans with at Least One Basic Activity Limitations*TABLE 6.1

Ages 18–64 (%) Ages 65 and Older (%)

Total 33 60

Sex

Male 27 52

Female 36 62

Income

Very poor 43 77

Poor 41 69

Middle income 32 60

Upper income 22 44

Ethnicity

White, non-Hispanic 32 57

African-American, non-Hispanic 34 62

Hispanic 24 57

Asian 19 47

*Ability to perform activities needed to maintain an independent life such as shopping, bathing, or working (for those younger than age 65).

SOURCE: National Center for Health Statistics (2017a)

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UNDERSTANDING CHRONIC PAIN

Chronic pain affects 40% of Americans (Institute of Medicine, 2014). It falls on the border between disability and chronic illness. As writer Melanie Thernstrom (2010:5), who herself lives with chronic pain, explains:

Ordinarily, pain is protective—a finely wired system warning the body of tissue damage or disease and enforcing rest for the bone to knit or the fever to run its course. This is known as acute pain; when the tissue heals, the pain disappears. When pain persists long after it has served its function, however, it transforms into the pathology of chronic pain. Chronic pain is the fraction of pain that nature can’t heal, that does not resolve over time, but worsens. It can begin in many ways—as trivial as a minor injury or as grave as cancer or gangrene. Eventually, the tissue heals, the diseased limb is amputated, or the cancer goes into remission, and yet the pain continues and begins to assume a life of its own.

As this suggests, chronic pain is a symptom, not an illness. In some cases, it can be caused by an injury or illnesses such as arthritis or cancer. In other cases, no specific cause can be identified; this is especially true for chronic headaches and back pain, the two most common types of chronic pain. In still other cases, some doctors will give diagnoses of contested illnesses (such as irritable bowel syndrome, fibromyalgia, or chronic fatigue syndrome) that other doctors question.

Living with Chronic Pain

Although the causes of chronic pain are often unclear, its consequences are obvi- ous. In addition to its physical toll (which includes sleep deprivation and exhaus- tion), chronic pain damages social relationships; increases depression, anxiety, and the risk of suicide; and costs the nation $600 billion yearly in medical costs and re- duced productivity (Institute of Medicine, 2014). As Thernstrom (2010:5) writes:

[As] the pain worsens, the body sensitizes, and other parts begin to hurt, too. She has trouble sleeping; she stumbles through her days. Her sense of her body as a source of pleasure changes to a sense of it as a source of pain. She feels haunted, persecuted by an unseen tormentor. Depression sets in. It feels wrong . . . maddening . . . delusional. She tries to describe her torment, but others respond with skepticism or contempt. She consults doctors, to no avail. Her original affliction—whatever it may have been— has been superseded by the new “disease of pain,” (Ellipses in original).

Treating those who live with chronic pain is notoriously difficult. In addition, doctors disagree on treatment, and few American doctors are trained in pain man- agement (Institute of Medicine, 2014). Physical therapy, strength training, medi- tation, and psychological treatments that help people think differently about their pain can often help but are underutilized (Foreman, 2014). Marijuana may well be useful, but little money is available for research on it, and it remains illegal in many states (and under federal law). Drugs derived from opiates such as OxyContin are often used and sometimes overused. Ironically, they are also often underused both

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because doctors share popular American beliefs about opiates and addiction and because they fear arrest under strict U.S. drug-trafficking laws (Foreman, 2014).

Gender, Ethnicity, Class, and Chronic Pain

Chronic pain is most common among women, those who are poor, minorities, and the elderly. Unfortunately, obtaining appropriate treatment is especially dif- ficult for members of all these groups (Hoffman and Tarzian, 2001; Thernstrom, 2010). (Obtaining proper treatment is also difficult for children because doctors especially fear giving them potentially dangerous medications.)

Women—the majority of those living with chronic pain—are significantly more likely than men to encounter doctors who ascribe their pain to psychiatric causes and prescribe sedatives or psychotherapy rather than effective pain medica- tions (Barker, 2005; Hoffman and Tarzian, 2001; Werner and Malterud, 2003). To avoid this fate, women with chronic pain must tread a fine line, striving to appear neither too sick nor too well and neither too assertive nor too passive in order to receive proper treatment and avoid being labeled hysterical or pushy, malingerers, or whiners (Thernstrom, 2010). Not surprisingly, women consumers have been at the forefront of movements to medicalize chronic fatigue syndrome, multiple chemical sensitivity, fibromyalgia, and other contested illnesses (Barker, 2005).

A different set of stereotypes makes it difficult for persons of color to receive proper treatment for pain (Chen et al., 2005; Thernstrom, 2010). Numerous studies have found that doctors routinely dismiss minority patients’ reports of pain on the assumption that such patients are really seeking drugs for recreational purposes.

The same bias limits poorer persons’ access to pain medication. In addition, poorer persons’ pain more often stems from their work. In these cases, however, individuals often have access only to company-employed doctors who have a vested interest in dismissing or downplaying—and thus undertreating—their pain.

LIVING WITH DISABILITY AND CHRONIC ILLNESS

Living with disability or chronic illness, whether or not it results in chronic pain, is a long-term process that includes responding to initial symptoms, injuries, or diag- noses; dealing with one’s evolving situation; seeking and managing health care; and continually reconceptualizing one’s future. In this section, we examine this process and explore how illness, pain, and disability affect individuals’ lives, relationships with others, and sense of self. In addition, we look at how the experience of illness has in some cases led individuals to start or join social movements based around illness.

Responding to Initial Symptoms

Becoming a chronically ill or disabled person begins with recognizing that some- thing about the body is troubling. This recognition can be slow to arrive. Health problems (such as stiffening joints caused by arthritis or gradual vision loss caused by cataracts) often build gradually, allowing individuals almost unconsciously to minimize and adapt to these symptoms. In addition, the signs of illness and disability often don’t differ greatly from normal bodily variations. A child who doesn’t walk

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by 12 months of age might have a disability or might simply be a slow devel- oper. Similarly, children with epilepsy, for example, can for many years experience “headaches,” “spaciness,” and “dizzy spells” before they or their parents recognize these experiences as signs of epilepsy.

Social scientists refer to this process of defining, interpreting, and otherwise responding to symptoms as illness behavior (Mechanic, 1995). A review article by anthropologists Vuckovic and Nichter (1997) summarizing 20 years of research studies concluded that U.S. residents treat between 70% and 95% of all illness episodes without a doctor’s assistance; it is likely that this percentage has grown considerably now that many people turn to the Internet for health advice before seeking medical care (Fox and Duggan, 2013). Individuals typically begin by med- icating themselves or those under their care with nonprescription medications recommended by friends, families, store clerks, or pharmacists or, more rarely, with prescription medicines left over from previous illnesses.

When and whether individuals seek formal medical diagnoses for acute or chronic medical problems depends on a variety of factors. According to the illness behavior model, individuals are most likely to seek medical care if (1) their symptoms are frequent, persistent, visible, and severe enough to interfere with daily activities; (2) they lack alternative explanations for their symptoms; (3) their families and friends generally trust doctors and support seeking medical care for health problems; and (4) no psychological, economic, or practical barriers keep them from accessing health care (Mechanic, 1995). “Key Concepts: Predicting Illness Behavior,” summarizes this model.

Predicting Illness Behavior

Individuals Are Likely to Define Themselves as Ill and Seek Medical Care When

Individuals Are Unlikely to Define Themselves as Ill or Seek Medical Care When

Symptoms appear frequently or persistently (e.g., coughing blood once per day for a week).

Symptoms appear infrequently (e.g., coughing blood every few months).

Symptoms are highly visible (e.g., rash on face).

Symptoms are not especially visible (e.g., rash on lower back).

Symptoms are severe enough to disrupt normal activities (e.g., epileptic convulsions).

Symptoms are mild (e.g., annoying but tolerable headaches).

Illness is only likely explanation for physical problems (e.g., no recent changes in life circumstances that might explain headaches).

Alternative explanations for physical problems are available (e.g., recent stresses may explain headaches).

Access to health care is readily available (e.g., good health insurance).

Access to health care is poor (e.g., no health insurance).

Trust in doctors is high, and families and friends encourage seeking medical help.

Trust in doctors is low, and families and friends discourage seeking medical help.

KEY CONCEPTS

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Gender, Age, Class, Ethnicity, and Illness Behavior Illness behavior is signifi- cantly affected by gender, ethnicity, age, and social class. As Chapter 2 describes, for a variety of biological and cultural reasons, women are more likely than men to seek medical care when they experience bodily changes that might be symp- toms of illness. Age has a more mixed effect on illness behavior. On the one hand, elderly persons experience more symptoms and more illness and so more often seek medical care. On the other hand, as the body declines, some elderly persons begin to expect a certain amount of physical discomfort, grow tired of constant visits to doctors, and so put off seeking diagnosis for new symptoms.

Similarly, working-class and poor individuals often accept physical pain as an unavoidable consequence of hard living and hard work, so they put off medical care until their symptoms interfere greatly with their daily lives. At any rate, even if they want medical care, many working-class and poor individuals can’t afford to pay for care, can’t get time off work to seek care, or lack transportation to go to a doctor or clinic. Moreover, those who can afford health care only at public clinics where long waits and rude treatment are common may put off seeking care as long as they can.

Ethnicity also affects illness behavior. Not surprisingly, members of poor eth- nic groups are less likely to seek early diagnoses for all the reasons that poor persons are less likely to do so. In addition, some ethnic groups (especially those that include many recent immigrants) may feel more comfortable seeking care from traditional healers, at least initially. Similarly, among all ethnic groups, indi- viduals are most likely to seek early diagnosis from a doctor if their friends and relatives trust doctors and encourage medical help seeking (Pescosolido, 1992; Pierret, 2003).

The Search for a Diagnosis Eventually, however, if symptoms persist—and es- pecially if they progress—individuals and their families are likely to reach a point where they can’t avoid recognizing that something is seriously wrong. As their previous interpretations of their symptoms crumble, individuals find themselves in an intolerable situation, torn by uncertainty regarding the changes in their bodies and their lives. At this point, any diagnosis can become preferable to uncertainty, so the incentive to seek diagnosis increases (Pierret, 2003; Sim and Madden, 2008).

Seeking a diagnosis, however, does not necessarily mean receiving one. Al- though some problems are relatively easy to diagnose—a 45-year-old white man who complains to his doctor of pains in the left side of his chest will probably quickly find himself getting tested for a heart attack—others are far less obvious. Persons with fibromyalgia, for example, often find that doctors initially dismiss their symptoms as psychosomatic or trivial (Barker, 2005; Sim and Madden, 2008). In addition, the same symptoms may more rapidly produce a diagnosis for some than for others. For example, as previously mentioned, doctors more often dismiss women’s complaints as merely emotional problems than they do men’s complaints (Council on Ethical and Judicial Affairs, American Medical Association, 1991).

Initially, both women and men can find these alternative diagnoses comfort- ing and welcome—after all, it’s far easier to hear that you are just responding to

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stress than that you have multiple sclerosis. When symptoms persist, however, in- dividuals find themselves torn by ambiguity and uncertainty, experiencing anx- iety about their failing health but often receiving little sympathy or help from relatives and colleagues (Barker, 2005; Charmaz and Rosenfeld, 2010; Stockl, 2007). As a result, most people eventually seek more accurate diagnoses, going from doctor to doctor until they find one who offers a plausible explanation for their symptoms.

When doctors cannot offer a convincing diagnosis, however, individuals may seek to diagnose themselves, a process known as self-diagnosis. The rise of the Internet and other new technologies has made self-diagnosis much easier in recent years (Conrad, Bandini, and Vasquez, 2016; Copelton and Valle, 2009). Individuals can now go online and research their symptoms on a wide range of websites. They can also find online support groups that provide more details on others’ experiences in obtaining diagnoses, including names of potentially helpful doctors or tests (Conrad, Bandini, and Vasquez, 2016). Finally, in many cases individuals can now, on their own, pay for diagnostic tests offered direct to the public. For example, celiac disease is an autoimmune disorder that causes a wide range of gastrointestinal and other problems in affected individuals when they eat food containing gluten. Consequently, many who believe they have the disease stop eating gluten and, if they improve, feel even more confident of their self-diagnosis. Doctors, however, typically will not diagnose someone with celiac disease unless the diagnosis is confirmed by an established set of invasive and often highly un- pleasant tests (which only work if individuals keep gluten in their diet for several months). Consequently, those who believe they have celiac disease increasingly are turning to laboratories that offer apparent scientific testing for celiac disease. Although doctors do not consider these tests definitive, the test results can help individuals convince doctors of their self-diagnosis (Copelton and Valle, 2009). As this suggests, in the end any diagnosis—even one that requires a lifelong, highly restrictive diet—may be easier to live with than having no explanation for one’s problems. In addition, having a diagnosis makes it more likely that others will be- lieve that one’s problems are real.

Managing Health Care and Treatment Regimens

Persons who live with chronic illness and disability can turn to both conventional and alternative health care for help. And increasingly, they use the Internet to help them in these decisions.

Using Conventional Health Care Living with chronic illness or disability often means living a life bound by health care regimens. That said, some indi- viduals will strictly follow prescribed regimens of diet, exercise, or medication, whereas others won’t. Researchers traditionally have framed this issue as a mat- ter of compliance—that is, whether individuals do as instructed by health care workers.

The most commonly used framework for studying compliance is the health belief model. As we saw in Chapter 2, this model was developed to explain why

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healthy individuals adopt preventive health behaviors. The same model is also used to understand why people who have acute or chronic health problems comply with medical advice regarding treatment (see “Key Concepts: The Health Belief Model and Medical Compliance”). The model suggests that individuals will be most likely to comply if they (1) believe they are susceptible to a health problem that could have serious consequences, (2) believe compliance will help, and (3) perceive no significant barriers to compliance. For example, people who have diabetes will be most likely to comply with their prescribed diet if they believe that they face substantial risks of blindness due to diabetes-induced glaucoma, that blindness would substantially decrease their quality of life, that the prescribed diet would substantially reduce their risk of blindness, and that the diet is neither too costly nor too inconvenient.

The health belief model is a useful but limited one for understanding compli- ance with medical treatment because it largely reflects the medical model of illness and disability. First, the health belief model assumes that noncompliance with medical recommendations stems primarily from psychological processes internal to the patient. Although this is sometimes true, in other cases patients don’t com- ply because health care workers did not sufficiently explain either the mechanics of the treatment regimen or the benefits of following it (Conrad, 1985). Patients also might not comply because they lack the money, time, or other resources needed to do so.

The Health Belief Model and Medical Compliance

People Are Most Likely to Comply with Medical Advice When They . . .

Example: Compliance Likely

Example: Compliance Unlikely

Believe they are susceptible.

50-year-old man with hypertension who believes he is at risk for a heart attack

15-year-old boy diagnosed with epilepsy who has had only minor problems and does not believe he is at risk for convulsions

Believe risk is serious. Believes that heart attack could be fatal

Believes that convulsions would not be physically dangerous

Believe compliance will reduce risk.

Believes he can reduce risk through taking medication regularly

Believes he doesn’t really have a problem, so he doesn’t see how medication could help

Have no significant barriers to compliance.

When medication is affordable and has no serious or highly unpleasant side effects

When medication makes the boy feel drowsy, dull, and set apart from his peers

KEY CONCEPTS

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Second, the health belief model implicitly assumes that compliance is always good (i.e., that health care workers always know better than patients what patients should do). Yet although health care workers often can help their patients considerably, this is not always the case. Especially with chronic conditions, the only available treatments may be disruptive to normal routines, experimental, ineffective, unpleasant, or potentially dangerous. As a result, many people who at first diligently follow prescribed regimens eventually abandon them (Rosenfeld and Weinberg, 2012). “Contemporary Issues: Mobile Digital Health Devices,” discusses the skyrocketing increase in devices designed to increase compliance and health-protecting measures among both healthy individuals and those already diagnosed with illnesses.

Using Alternative Therapies As people’s faith in mainstream medicine declines, some begin experimenting with their treatment regimens, learning through trial and error what works best for them not only physically but also socially, psycho- logically, and economically. Others begin using alternative or complementary therapies (defined broadly as treatments not widely integrated into medical train- ing or practice in the United States).

CONTEMPORARY ISSUES

Mobile Digital Health Devices

The last few years have seen tremendous growth in the use of Internet-connected mobile devices that digitally monitor individuals’ health. These include not only the Fitbit and the Apple HealthKit but also a cornucopia of other wearable digital devices: implanted sensors that monitor blood glucose or medications; watches, athletic shoes, and wristbands that measure exercise activity, heart rate, or sleep patterns; and thousands of smartphone apps that monitor mood, calorie intake, and much more. Users can upload their data to a computer or the Internet and share it with doctors, family members, or online groups of fellow sufferers.

The benefits of these technologies are obvious. Individuals who track their calorie intake or exercise routines, for example, are more likely than those who do not meet their personal goals. Those who track danger signs (such as persons with diabetes who track blood glucose levels) may be able to treat themselves before a problem develops and avoid the need to seek medical care. And those who share their data with their health care providers may benefit when their providers notice early signs of a problem developing.

Yet mobile health devices also have a downside (Lupton, 2013a). First, they encourage us to trust digital measures more than our sense of our own body. Yet our intuitive judgments are sometimes correct, and our digital devices sometimes fail us. Second, these devices encourage us to believe that our health is fully under our own control, potentially stigmatizing any individual who falls ill or who does not (or cannot afford to) rely on digital health devices. Finally, many of these devices frequently remind individuals (via beeps, texts, or pop-up messages) to monitor their body or moods, take a specified action, or upload data. As a result, they can add to the burdens of illness by increasing anxiety, resentment, and the sense that one’s life has been overwhelmed by one’s illness (Lupton, 2013b; Oudshoorn, 2011).

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Interest in alternative therapies has grown rapidly in the United States, both among healthy persons interested in avoiding illness and among those with chronic or acute illnesses. According to data collected by federal researchers through national random surveys, one-third of U.S. residents use some form of alternative therapy. The most commonly used therapies are herbal and other dietary supplements; deep breathing exercises; yoga, tai chi, and qi gong; chiro- practic or osteopathic treatments; and meditation (Barnes et al., 2015).

Users of alternative therapies are disproportionately likely to be female, younger than 65, and college educated. Use is also more common among those who live with chronic health problems, especially back, neck, or joint pain (Barnes et al., 2008; Tindle et al., 2005). Most who use alternative therapies do so because conventional treatments have not helped them. That said, individuals typically use alternative therapies to complement rather than replace mainstream medicine.

The popularity of alternative therapies rests on belief—or at least hope—in the efficacy of these treatments. These beliefs are supported by both personal ex- perience and recommendations from friends and acquaintances who have used alternative therapies. In some cases, the therapies no doubt did help, either be- cause of the biological effects of the therapies or because consumers’ belief in the therapy helped the body to heal itself, as happens in around 30% of all persons treated with placebos (drugs known to have no biological effect). In other cases, individuals attribute cures to alternative therapies when actually the problem went away on its own, as happens with 70% to 80% of all health problems (Lundberg, 2001:123). Finally, people sometimes convince themselves that therapies helped even though their health did not actually improve.

Use of alternative therapies also rests on the dangerous assumption that “nat- ural” treatments are automatically safe. For example, the Chinese herb ma huang can help individuals lose weight, but it can also cause heart attacks and strokes. Similarly, kava kava tea may reduce anxiety but cause liver damage, and gingko biloba can improve circulation but increase bleeding during surgery (McNeil, 2002). Moreover, whereas the federal Food and Drug Administration regulates the safety, potency, and effectiveness of prescription drugs, no governmen- tal agency regulates herbal remedies or supplements. Although manufacturers can’t legally claim that alternative herbs and supplements cure any condition or disease, they can claim that their products might help. Unfortunately, avail- able research suggests that few of these treatments are useful, some contain dangerous contaminants such as lead or arsenic, and some don’t even contain the herb or vitamin listed on the bottle (Guallar et al., 2013; Offit and Erush, 2013).

Seeking Information on the Internet Whether individuals rely primarily on mainstream or alternative therapies, many seek information about their con- ditions on their own rather than relying solely on information provided by health care professionals. In the past decade, public access to information has exploded with the exponential growth of Internet use. As a result, more than half of Americans use the Internet to seek health information, and more than

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one-third have used the Internet to diagnose themselves or others (Fox and Duggan, 2013). That said, Internet use is not evenly distributed across the pop- ulation: Whites, women, and middle- to upper-class individuals are more likely than others to use it.

Unfortunately, there are no controls on the quality of materials posted on the Internet, and its vast size makes it impossible to police for fraudulent in- formation such as claims that herbs can cure cancer or HIV/AIDS. Moreover, more often than not, popular search engines take readers seeking health-related information to websites run by individuals or corporations that have vested economic interests in selling certain drugs or treatments (Green, Kazanjian, and Helmer, 2004). Partly in response to concerns about misleading websites, the U.S. Department of Health and Human Services now runs its own website (www.healthfinder.gov) to link consumers to reliable online sources of health information.

Despite these problems, the Internet has proven enormously beneficial to those living with chronic health problems. The Internet has allowed individuals to find online forums designed to help individuals who share similar health issues or concerns and to find information far beyond what they otherwise could access (Barker, 2008; Fox, 2012). This is especially useful for those with rare conditions, those confined to their homes by severe illness or disability, and those with stig- matized illnesses who might shy away even from doctors (Conrad and Stults, 2010; Vanderminden and Potter, 2010). Consequently, the Internet can help individuals negotiate with health care providers regarding treatment and navigate the daily difficulties of living with illness or disability.

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The Internet has also given individuals access to options that their own doctors might reject as unethical. “Ethical Debate: The Sale of Human Organs,” p. 132, discusses one of these options.

Managing Social Relationships and Social Standing

For better or worse, chronic illness and disability necessarily alter relationships with friends, relatives, and others. Illness and disability can strengthen social rela- tionships, as friends and families pull together to face health problems, old wounds are healed or put aside, and individuals realize how much they mean to each other. Illness and disability, however, can also strain relationships. Friends and family of- ten help each other willingly during acute illnesses or the first few months of a chronic illness or traumatic injury but pull away over time. This is especially true for male friends and family, who are less often socialized than women to take care of others (Cancian and Oliker, 2000). Moreover, the growing burden of grati- tude can make those who have chronic illnesses or disabilities reluctant to ask for needed help. Problems are especially acute among elderly persons who have out- lived close relatives and friends and must rely on more distant social connections for help and support.

Relationships also suffer if individuals no longer can participate in previous activities. How do you maintain a relationship with a tennis partner if you no longer can hold a racket? How do you maintain a relationship with a friend when transportation barriers keep you from going to movies or restaurants? And how do you maintain a relationship with a spouse or lover when your sexual abilities and interests have changed dramatically—or when your partner no longer finds you sexually attractive?

Declines in financial standing also strain relationships. An individual might, for example, have the physical ability to go to a movie with a friend but lack the money to pay admission. Women and minorities are especially hard hit because they typically earn lower wages and have more erratic work histories before be- coming ill or disabled, so they often qualify for lower Social Security benefits. At the same time, financial stresses can damage relationships with children, lovers, and spouses.

Managing Stigma Illness and disability affect not only relationships with friends and family but also less intimate relationships. Most basically—and despite the pre- dictions of the sick role model—living with illness or disability means living with stigma. Stigma refers to the social disgrace of having a deeply discrediting attri- bute, whether a criminal record, a gay lifestyle, or a socially unacceptable illness. The term stigma does not imply that a condition is immoral or bad, only that it is commonly viewed that way.

Some illnesses and disabilities produce relatively little stigma, but others are so stigmatized that they can affect even relationships with health care providers. Illnesses and disabilities are most likely to result in stigma when they are believed to be the fault of the affected individual and when they cause fear or dread; visible disfigurement; loss of bowel, urinary, or other bodily functions; cognitive

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problems; or behavior that mimics cognitive problems (Charmaz and Rosenfeld, 2010). HIV/AIDS, for example, elicits particularly high stigma because it is often interpreted as punishment for sin, is contagious (and thus frightening), and can cause wasting, facial sores, loss of bodily functions, and dementia.

Individuals with stigmatized illnesses and disabilities can use various strategies to manage that stigma. Many attempt to avoid stigma by hiding it or otherwise de- flecting attention from it. For example, a man who bumps into furniture because of failing eyesight might try to convince others that he is merely clumsy, and a woman who has arthritis might choose not to go out with friends on days when her symptoms flare up.

Conversely, others manage stigma by challenging the very basis of that stigma. Some disabled men, for example, become star athletes in part to reject the as- sumption that a disabled man can’t be “masculine.” Others challenge stigma more directly by fighting for civil rights. Still others fight for acceptance of their bodies by displaying their own proud acceptance or even appreciation of their bodies. For example, for medical reasons, Aimee Mullin had both her legs amputated below the knee when she was one year old. She now is a professional model, actress, and

The Sale of Human Organs

One of the most extreme situations an ill individual can face is the failure of a major organ, be it the heart, lung, kidney, or liver. Such situations are death sentences unless the organ can be replaced with either a mechanical substitute or a donated human organ. But mechanical replacements are often poor substitutes for bodily organs. In addition, some mechanical replacements severely restrict individuals’ lives by tethering them to machines. Human organs, on the other hand, can be difficult or even impossible to obtain legally. More than 100,000 Americans are now on organ waiting lists, and 18 die each day (U.S. Department of Health and Human Services, 2010). As a result, an illegal, multimillion-dollar, international market in human organs has emerged (Bilefsky, 2010; Rohter, 2004).

Most commonly, the organs sold through this market are kidneys, although livers, lungs, corneas, and other organs also are sold. Because almost everyone is born with two kidneys and only one is needed to live, an individual can usually live a normal and healthy life with just one.

Selling an organ carries great risks but can seem worth it if an individual is poor enough. In Brazil, for example, a person can earn $80 per month working at minimum wage—if work is available—or sell his or her kidney for $3,000. Such sales are illegal in many countries, but those laws are rarely enforced.

To some observers, the trade in human organs is a natural and reasonable market response in which supply (organs for sale) develops to fill an obvious need (organs wanted). These observers see no difference between selling organs and selling any other valued commodity such as drugs, cars, or food. Similarly, they argue, people should have at least as much right to buy an organ that will save their life as they have to buy a television or a facelift and as much right to risk their health by selling an organ as they have to risk their life by selling their labor in a dangerous occupation (Cherry, 2005).

Other observers, however, compare the trade in human organs to the trade in humans and consider selling organs no more ethical than selling slaves. They

ETHICAL DEBATE

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athlete who revels in showing off her many artificial legs, including an exquisitely carved, high-heeled, wooden pair and a carbon-fiber pair for running that mimics a cheetah’s stride.

Health Social Movements In addition to challenging stigma and discrimina- tion individually, persons who live with or are at risk of illness or disability can also turn to collective political action to address their grievances. Like other social movements, health social movements are collective (rather than individual) efforts to change something about the world that movement members believe is wrong (Brown et al., 2004; Brown and Fee, 2014).

Health social movements have a variety of goals. Many focus on obtaining equal access to health care by, for example, fighting to loosen health insurers’ re- strictions on what treatments they will cover. Other health social movements focus on meeting the needs (including access to health care) of a particular group. For example, the feminist health movement has fought to give women equal access to heart disease treatments, to halt the unnecessary use of hysterectomies, and to increase the number of women physicians. Finally, a growing number of health

argue that no one truly sells their bodily organs freely but does so because they are coerced by poverty. They also argue that whenever a highly profitable commodity is unregulated by laws, unscrupulous individuals will find ways to profit, and vulnerable individuals—whether buyers or sellers—will be exploited. Individuals who purchase black-market organs have no guarantee that the donor was healthy or that the organ is a good match for them, and those who sell organs have no guarantee that the surgery will be conducted safely, that it won’t harm their health, and that they will receive needed health care afterward. A study conducted in the Indian state of Tamil Nadu found that virtually all who (illegally) sell their kidneys do so to pay crippling debts. Yet because most (86%) were in worse health in the years after surgery, their average family incomes declined by one-third, even though average incomes in the state increased (Goyal et al., 2002). Despite these problems, though, the trade in organs is likely to continue so long as demand continues to outstrip supply.

Sociological Questions

1. What social views and values about medicine, society, and the body are reflected in policies that allow or forbid the selling of human organs? Whose views are these?

2. Which social groups are in conflict over this issue? Whose interests are served by laws forbidding the sale of human organs? By laws permitting it?

3. Which of these groups has more power to enforce its view? What kinds of power do they have?

4. What are the intended consequences of permitting the sale of human organs? What are the unintended social, economic, political, and health consequences of this policy?

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social movements focus on winning medical acknowledgement for contested ill- nesses. For example, few doctors believe in the existence of “multiple chemical sensitivity,” which is theorized to make some individuals ill whenever they contact any of the many chemicals common to everyday modern life. Persons who believe they have this condition have organized to lobby for medical recognition of their condition and to sue insurance companies that refuse to cover their treatment.

The rise of health social movements reflects a variety of factors (Brown et al., 2004). The civil rights, women’s rights, and gay rights movements set the stage for a broader discussion of rights and a broader acceptance of political action across American culture. Health social movements are partly a product of this changed cultural climate. In addition, the same cultural and technological forces that in- creased the use of the Internet and alternative health care have fostered health so- cial movements by reinforcing the idea that individuals have the right to challenge medical authority. Individuals are most likely to participate in health social move- ments when they come to believe that medical authorities have failed to protect them (or their loved ones) from diseases, to identify their diseases, or to treat their diseases appropriately. For example, the environmental breast cancer movement was organized primarily by women affected by the disease who questioned why medical research has focused almost exclusively on early diagnosis and treatment of breast cancer rather than on prevention. As this example suggests, people who live with illness and disability are not simply victims of their fate. Rather, they may actively work to better their situation and those of others like them.

The Body and the Self Regardless of a person’s political stance toward his or her condition, all disabilities and chronic illnesses challenge the self (Charmaz, 1991; Reeve et al., 2010; Weitz, 1991). Those whose bodies differ in some critical way from the norm must develop a self-concept in the context of a culture that interprets bodily differences as signs of both moral and physical inferiority. The resulting stigma leads such individuals to feel set apart from others (Conrad, 1987; Weitz, 1991).

Illness and disability threaten self-concept in various ways. People who be- come physically deformed or less attractive often find it difficult to maintain their self-images. And no matter how attractive a disabled person is, others typically assume they lack sexual desire (Nario-Redmond, 2010). Similarly, those who lose their financial standing or their social roles as worker, student, spouse, or parent due to illness or disability can find it difficult to maintain their sense of self (Balmer, Griffiths, and Dunn, 2015; Flurey et al., 2018; Weitz, 1991:97). In addition, the need to rely on others for assistance can shake individuals’ images of themselves as competent adults.

To cope with these threats to the self, individuals sometimes attempt in- tellectually to separate their essential selves from their recalcitrant bodies. They might mention how their leg is acting up today, as if they were talking about a neighbor rather than a part of their body, or talk about their lives and their selves with no mention of their bodies at all. This strategy succeeds best when symptoms follow a predictable course and the problem affects only one part of the body.

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The impact of disability and illness on the self, however, is not solely nega- tive. In fact, research consistently finds that even severe disability and illness have relatively little effect on overall life satisfaction or happiness, although they do affect satisfaction with health, income, and social relationships (Oswald and Pow- dthavee, 2008; Powdthavee, 2009). Whether individuals grow up with disability or become disabled over time, they may learn to devalue physical appearances, derive self-esteem from other sources, focus on the present rather than on an intangible future, and compare themselves to others who are ill or disabled rather than to the able-bodied (Powdthavee, 2009; Weitz, 1991:136–140). They may learn to set priorities in their lives and accomplish their most important goals rather than wasting precious energy on trivial concerns (Charmaz, 1991:134–166; Harrop et al., 2017). Finally, they may come to define their condition simply as part of who they are, with good points and bad points, and to recognize that much of their personalities and accomplishments exist not despite their physical condition but because of it. As Mark Zupan, a husband, engineer, renowned wheelchair rugby athlete, and quadriplegic since age 18, writes:

When I was growing up, sports meant everything to me. So you can imagine how I felt when it became clear that I was going to spend the rest of my life in a wheelchair. I thought I would never be able to play again—or drive a car, or have a job, a girlfriend, a house, a family of my own. [But] in truth, my accident has been the best thing that could ever have happened to me. I’m not trying to be glib when I say this, or rationalize my mistakes, or offer you a steaming bowl of bullshit-flavored chicken soup for the soul. What I am saying is that it has been the single most defining event of my life. And without it, I wouldn’t have seen the things that I’ve seen, done the things I’ve done, and met so many incredible people. . . . I wouldn’t have come to understand and cherish my family and friends the way I do, and feel the kind of love they have for me and I have for them. In other words, I wouldn’t be me, plain and simple.

Learning to live with limited function has forced me to take a good hard look at myself. When something catastrophic like this happens, the anger, frustration, and despair can become overwhelming. . . . There have been times that I have stared in the mirror and hated what I saw. . . . But here’s the bottom line: At some point, life is going to give you a swift, hard kick to the nuts. You can’t control everything that happens to you, but you can try to understand it. For me, this has been just one of the many things I’ve learned in this painful, beautiful, crappy, exhilarating, stupid, rewarding life that started the day I landed in this chair—which I thought was my cross to bear, but was actually my salvation. (Zupan and Swanson, 2006:4–6)

IMPLICATIONS

Given the aging of the American population and the increasing ability of medical technology to keep ill and disabled individuals alive, many more of us can expect eventually to live with illness, chronic pain, and disability—whether our own,

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that of our parents, or those of our children. Consequently, understanding what it means to live with these conditions has never been more important.

As both social constructions and social statuses, illness and disability affect all aspects of life. Most obviously, they force individuals to interact with health care providers and to manage health care regimens. But illness and disability also affect family relationships, friendships, work prospects, educational performance and opportunities, and, perhaps most important, sense of self and relationship with one’s own body. Living with illness and disability also requires people to come to terms—or to refuse to come to terms—with uncomfortable questions and harsh realities regarding their past, present, and future.

Illness and disability can bring social disadvantages similar to those experi- enced by members of traditionally recognized minority groups. Yet the impact of illness and disability is not always negative because illness and disability at times can provide individuals with the basis for increased self-esteem and enjoyment of life. Moreover, like other minorities, those who live with illness and disability have in recent years moved from pleas for tolerance to demands for rights. Those demands have produced significant changes in American architecture, education, transpor- tation, and so on, and they have laid the groundwork for the changes still needed.

SUMMARY

1. The medical model of disability defines disability as something located solely within the individual mind and body. The sociological model of disability, on the other hand, defines disability as restrictions or lack of ability to perform activities resulting largely or solely from either social responses to bodies that fail to meet social expectations or assumptions about the body reflected in the social or built environment.

2. Like members of minority groups, persons with disabilities experience prejudice and discrimination and increasingly share a sense of community.

3. The disability rights movement argues that persons with disabilities deserve the same rights as other members of society. This philosophy gained important legal support with passage of the Americans with Disabilities Act. However, until recently the impact of that act was limited by restrictive court decisions.

4. Approximately 15% of noninstitutionalized persons living in the United States have a disability. African Americans, women, older persons, and poorer persons have higher rates of disabilities than others.

5. Chronic pain affects one of every six Americans and is most common among women, poorer persons, minorities, and elderly persons. Obtaining appropriate treatment for chronic pain is notoriously difficult, especially for members of these four groups.

6. Becoming a chronically ill or disabled person begins with recognizing that something about the body is troubling, a process that may develop slowly.

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The process of responding to symptoms and deciding whether to seek diagnosis and treatment is known as illness behavior.

7. Obtaining an accurate diagnosis is often difficult. According to the illness behavior model, individuals are most likely to seek medical care and diagnosis if (a) their symptoms are frequent, persistent, visible, and severe enough to interfere with daily activities; (b) they lack alternative explanations for their symptoms; (c) their families and friends generally trust doctors and support seeking medical care for health problems; and (d) no psychological, economic, or practical barriers keep them from accessing health care.

8. The health belief model predicts that individuals are most likely to comply with medical advice when they (a) believe they are susceptible to health dangers, (b) believe the risk is serious, (c) believe compliance will reduce their risk, and (d) have no significant barriers to compliance. Critical sociologists have noted that individuals sometimes have rational reasons for medical “noncompliance.”

9. Users of alternative therapies are largely female, younger than age 69, college educated, and suffering from chronic health problems, especially back pain, colds, neck pain, and joint pain.

10. Alternative therapies are typically used in addition to mainstream medicine by individuals who find that conventional treatments have not helped them, believe that alternative treatments are safe, or are discontented with modern society’s emphasis on science and rationality.

11. Many Americans use the Internet to seek health information, although the quality of that information varies widely. The Internet is particularly useful for those living with chronic health problems, especially if the problems are rare or stigmatized.

12. Illness and disability can threaten social relationships in many ways, especially when they cause stigma. Individuals can manage stigma by hiding their illness or disability, deflecting attention from it, or challenging the norms that stigmatize them.

13. Health social movements are collective efforts to improve health and health care, sometimes by changing definitions of health and illness.

14. Disabilities and chronic illnesses can threaten one’s sense of self and the body. However, they sometimes can improve individuals’ self-concepts.

REVIEW QUESTIONS

1. How do the medical and sociological models of disability differ?

2. Are people with disabilities a minority group? Explain.

3. How common is disability, and which social groups are most at risk?

4. How common is chronic pain, and which social groups are most at risk?

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5. What difficulties do individuals face in responding to initial symptoms of illness or disability and obtaining diagnoses?

6. What is illness behavior? Give an example.

7. Why do individuals sometimes ignore medical advice?

8. Why do individuals use alternative health care?

9. How can illness or disability affect social relationships and self-image?

10. How can individuals manage the stigma of illness or disability?

11. What are health social movements, and why have they become more common?

CRITICAL THINKING QUESTIONS

1. Think of a recent experience you, a close friend, or a relative had with a chronic or acute illness. Explain which concepts from the sociological literature on the experience of illness applied to your experience. If few concepts applied, explain why these concepts generally did not apply.

2. To protect or improve their health, many individuals take actions that lack scientific proof of effectiveness, such as taking vitamin C to cure colds. Think of something that you, your friends, or your relatives do that falls into this category. Why did you or they decide to adopt this measure? Why have you or they continued? What beliefs or principles underlie these decisions? Why doesn’t the lack of scientific proof affect these decisions?

3. What are some of the reasons why individuals seek alternative health care? What does the growing use of alternative health care tell us about modern medical care?

139

C H A P T E R

The Sociology of

Mental Illness

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LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand how cultural explanations for illness have changed over the centuries.

● Assess how ethnicity, gender, social class, social stress, and social capital affect mental illness.

● Compare the medical and sociological models of mental illness. ● Understand how medical and social ideas about mental illness have evolved

over time. ● Offer a sociological description of the experience of living with mental

illness.

Journalist Norah Vincent has struggled with depression for many years, although most of the time psychotherapy and psychotherapeutic drugs have helped her avoid serious problems. A few years ago, however, her depression landed her in a mental hospital. Dismayed by much of what she saw there, after her health sta- bilized she decided to fake symptoms of mental illness, have herself admitted to various mental hospitals, and write about the treatment she received. Summarizing her experiences, she writes:

There are few things more humiliating, more soul-destroying and depressing, than the process of being institutionalized. And the worst part is your own collusion in the process. You allow it to happen to you. . . . You become docile, subservient, frightened, dull, unthinking, susceptible to the mysterious self-fulfilling power of the rule. You loathe the tone of your own voice as you mewl and cower to the dingbat shoving you your meds or taking away your pen. You are demeaned by the routine as you regulate your life by mealtimes, loitering in the hall at eight, twelve, and six. You change as you acquiesce to rudeness, becoming less, becoming small. . . .

You do strange things. I tried, for example, to make shoelaces out of toilet paper [after the nurses removed them] so that I could walk like a normal person instead of limping like a gangster. The laces tore, of course, but it was a way to pass the time, rolling the long strands of tissue between my fingers as tight and string-like as they would go, and feeling, even though I failed to make the lashings tie or hold, the momentary elation of knowing that I could still exercise some form of creativity.

I learned to flick on the light over my bed with the teeth of a comb or the tip of the forbidden ballpoint pen so that I could read late at night when I couldn’t sleep and the dayroom was closed. The light switches were in the hall and recessed so that only the staff could access them . . . and thus enforce lights out at

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eleven and lights on at eight. Controlling light is no small matter, as they well knew. Just one of many daily benefits you take for granted in the outside world. (Vincent, 2009:41)

As Norah Vincent’s story suggests, mental illness is a social as well as a psy- chiatric condition, and mental hospitalization has both social and psychiatric con- sequences. We begin this chapter by considering the extent and distribution of mental illness. We then examine contrasts between the medical model of men- tal illness, which views mental illness as an objective reality, and the sociological model, which views mental illness as largely a social construction. Finally, we look at how social forces and values have affected both the history of treatment and the experiences of those who live with mental illness.

THE EPIDEMIOLOGY OF MENTAL ILLNESS

The importance of understanding mental illness becomes more apparent when we realize how many people are affected. The following section discusses research on the extent, distribution, and causes of mental illness.

The Extent of Mental Illness

Since the 1920s, social scientists have tried to ascertain the extent of mental illness. These researchers essentially have adopted medical definitions of mental illness (which, as we will see later in this chapter, are problematic). However, whereas doctors and other clinicians have focused on how biological or psychological factors can foster mental illness, social scientists have focused on how social factors can do so.

Over the years, researchers using a variety of methods have reached two con- sistent conclusions regarding the extent of mental illness. First, all societies, from simple to complex, include individuals who behave in ways considered unaccept- able and incomprehensible (Horwitz, 1982:85–103). Second, symptoms of mental disorder are fairly common. According to the National Comorbidity Survey Rep- lication, as of 2018 the largest national survey on the topic based on a random sample (Kessler et al., 2005a); during the course of one year, approximately 31% of working-age adults experience a diagnosable mental illness, with 20% expe- riencing a moderate or severe disorder. The most common illnesses are major depression and problems with alcohol use, which were reported by 17% and 13%, respectively. These estimates, however, are probably high because they are based on reports of symptoms taken out of context (Horwitz, 2002, 2007). When an individual reports that he is extremely sad, survey researchers can’t tell whether the sadness was caused by clinical depression or financial problems. Nor can re- searchers tell whether a woman who reports losing weight has done so because of depression or because she wanted to fit into her wedding dress.

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Social Stress and Mental Illness

Although mental illness is common, it does not burden all social groups equally. So why do some social groups experience more mental illness than others? For many sociologists, the answer lies in their different levels of social stress (Thoits, 2010).

In the past, sociologists interested in the link between mental illness and stress largely focused on the acute stresses of life events such as divorce, losing a job, or a death in the family. Researchers looked not only at the sheer number of life events individuals experienced but also at the meaning life events have for people and the resources individuals have for dealing with those life events. For example, an unplanned pregnancy means something quite different to an unmarried college student from a poor family than it does to a married, middle-class housewife.

Similarly, some individuals have resources that can reduce the stresses of life events (such as money, social support networks, and psychological coping skills), whereas others lack such resources (Lennon and Limonic, 2010; Turner and Brown, 2010). For example, a person whose marriage fails but who has enough income to maintain his or her current lifestyle, close friends to provide companionship and social support, and good stress-management skills will probably experience less stress than someone whose economic standing plummets after divorce, who has few friends, and who responds to stress by drinking.

As we saw in Chapter 2, recent research finds that chronic stress is more im- portant than acute stress for predicting poor physical health. Similarly, researchers have shown that chronic stresses affect mental health more than do acute stresses such as life events (Turner and Avison, 2003). Much research in this field now focuses on how exposure to chronic social stress may explain ethnic, gender, and social class differences in rates of mental illness.

Ethnicity, Gender, Social Class, and Rates of Mental Illness

Ethnicity, gender, and social class all affect rates of mental illness, as Table 7.1 sum- marizes. The rest of this section discusses these effects.

The Impact of Ethnicity: Stress Effects Researchers have uncovered few sig- nificant ethnic differences in rates of schizophrenia or other major mental illnesses. However, for still unexplained reasons, African Americans seem less likely than do

Sex, Ethnicity, and Social Class Groups with the Highest Lifetime Risks of Specific Mental IllnessesTABLE 7.1

Mood Disorders Impulse-Control Disorders

Substance Abuse Disorders Schizophrenia

Sex Females Males Males Males

Ethnicity Non-Hispanic whites

No ethnic differences

Hispanics and non- Hispanic whites

No ethnic differences

Social class Lower class Data unavailable Lower class Lower class

SOURCES: Aleman, Kahn, and Selten (2003); Kessler et al. (2005a)

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whites to develop anxiety or mood disorders. Nevertheless, African Americans are more likely—especially if they are poor—to report psychological distress, which overlaps with but is not the same as diagnosable mental illness (Kessler et al., 2005a). Researchers theorize that psychological distress among African Americans results from the chronic daily stresses of living with racism (Thoits, 2010). This would explain why, for example, wealthier African Americans—who can use their income to shield themselves somewhat from the effects of racism—experience less stress than do lower income African Americans (Turner and Avison, 2003).

Little recent research is available on psychological distress among other U.S. minority groups. However, Hispanic Americans are less likely than white Amer- icans to develop anxiety disorders, mood disorders, or substance abuse problems (Kessler et al., 2005a). Importantly, the rate of mental disorders among new immi- grants is significantly lower than that of U.S.-born Mexican Americans, but those rates converge over time. Researchers hypothesize that Mexican culture’s strong emphasis on extended families protects immigrants from mental illness by offering social support and thus reducing chronic stress among persons who are single, childless, less educated, or employed in low-prestige jobs. As Mexicans integrate into American culture, they lose these protections (Cervantes et al., 2013).

The Impact of Gender: Socialization Effects The impact of gender on men- tal illness is at least as complex as the impact of ethnicity. Most mental illnesses are equally common among men and women. However, men have higher rates of schizophrenia, substance abuse, and impulse control disorders (such as compulsive gambling or chronic violence), whereas women have higher rates of anxiety disor- ders and of mood disorders (such as depression) (Aleman, Kahn, and Selten, 2003; Kessler et al., 2005a).

These differences in mental illness parallel differences in gender roles (Rosen- feld and Mouzon, 2013). Consistently, men display higher rates of disorders linked to violence. As a result, some researchers hypothesize that these forms of mental illness occur when men become “over-socialized” to their gender roles. For exam- ple, a young man who fails to plan ahead, shows “reckless disregard” for safety, and gets into fights often, and who before the age of 15 often bullied others, got into fights, or skipped school, would meet the criteria for diagnosis with “antisocial personality disorder.” Yet these behaviors more or less parallel expectations within lower-class communities for how young men should act. Within these commu- nities, men who meet these expectations are typically considered dangerous, but not mentally ill, because their behavior is comprehensible. Although they might be labeled criminal, they are unlikely to be labeled mentally ill unless they somehow come to the attention of doctors from outside their communities.

Similarly, many sociologists hypothesize that depression results when tradi- tional female roles—or others’ expectations about the roles women should and should not play—cause chronic stress by reducing women’s control over their lives and exposing them to discrimination and prejudice (Horwitz, 2002:173–179; Thoits, 2010). This lack of control is multiplied by broader gendered inequality such as the lack of quality child care or equal pay for working women (Simon, 2014). Research has found that rates of depression are considerably higher among

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nonworking women and married mothers—the two groups that typically have the least control over their lives. Similarly, depression is especially common among men who have less power than their wives, have little control over their work, or lose their jobs.

The Impact of Social Class: Social Stress or Social Drift? Of all the de- mographic variables researchers have investigated, social class shows the strongest and most consistent impact on mental illness. As social class goes up, the rate of both diagnosable mental illness and psychological distress goes down (Eaton and Muntaner, 1999; Kessler et al., 1994). But does lower social class status cause men- tal illness, or does mental illness cause lower social class? In other words, do the social stresses associated with lower-class life lead to greater mental disorder, or do those who suffer from mental disorder drift downward into the lower social classes? These two theories are referred to as social stress theory versus social drift theory, respectively.

Researchers interested in social class have focused primarily on schizophrenia, the disease that shows the most consistent relationship to social class. Studies have found that schizophrenia and related disorders occur two to five times more often among those who have not graduated from college compared with those who have. Those who favor the social drift argument have shown that, for example, when patients are admitted to mental hospitals for the first time with a diagnosis of schizophrenia, they typically hold jobs that are lower in social class than one would expect from their family backgrounds. This suggests that mental problems caused these individuals to drift downward in social class (Eaton and Muntaner, 1999).

Most research, however, suggests that social stress better explains the link between social class and mental illness (Aneshensel, 2009; Schwartz and Meyer, 2010). For example, those diagnosed with schizophrenia are more likely than others to have grown up in lower-class homes and to have held stressful, noisy, hazardous, and physically uncomfortable jobs even before their first admissions to mental hospitals (Link, Lennon, and Dohrenwend, 1993; Muntaner et al., 2004). Recently, this theory has been vividly reinforced by reports of extremely high rates of mental illness among returning war veterans, most of whom come from poor or working-class families (see “Contemporary Issues: Invisible Wounds of War,” p. 145, for more details).

Social Capital and Mental Illness

As Chapter 3 explained, social capital refers to the resources available to an in- dividual through his or her social network. Social capital is more common among those with higher social class but affects mental health across ethnic, class, and gen- der lines (Song, 2011). It is not surprising that those with more social capital typ- ically report less psychological distress. For example, people in their 50s and 60s often have excellent social capital: extensive connections to friends, neighbors, and relatives who have garnered a wide variety of resources over many years. This may partly explain why people in this age range report less psychological distress than do younger persons. Similarly, although women typically have more friendships than

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do men, women’s friends often have relatively few resources. This may help explain why women are more likely than men to report psychological distress (Song, 2011).

DEFINING MENTAL ILLNESS

As with disability and physical illness, doctors and sociologists typically view mental illness in decidedly different ways. In this section, we contrast the medical and sociological models of mental illness. Neither model is absolute, however, because both sociologists and doctors often blend elements from each in their work. Nevertheless, the contrast between these two “ideal types” provides a useful framework for understanding the broad differences between the two fields.

The Medical Model of Mental Illness

To doctors and most other clinicians in the field, mental illness is an illness es- sentially like any other. To understand what this means, it helps to understand the history of medical treatment for syphilis, the disease that first demonstrated the power of medicine to control mental illness and in many ways established the frame through which doctors would understand all mental illnesses.

CONTEMPORARY ISSUES

Invisible Wounds of War

Since 2001, almost 3 million U.S. military members have served at least once in Iraq or Afghanistan (Watson Institute, 2018). Because of both military and medical advances, far fewer U.S. soldiers have died there than in previous military engagements. However, longer, more frequent, and often involuntary deployments in a war characterized by suicide bombers and often-invisible improvised explosive devices (IEDs) have taken a heavy psychological as well as physical toll (Tanielian and Jaycox, 2008; Watson Institute, 2018). Explosive devices also have caused a dramatic increase in traumatic brain injuries, which in turn can cause both psychological and cognitive damage. According to a major report by the nonprofit RAND Corporation (Tanielian and Jaycox, 2008), an extraordinary 30% of returning troops experience disabling posttraumatic stress disorder (PTSD), major depression, or traumatic brain injury (TBI).

Individuals with these conditions are at substantially increased risk for suicide, divorce, unhealthy drug use and sexual activities, and other problems (Tanielian and Jaycox, 2008). Their children and spouses, too, may suffer, as veterans’ ability to parent declines and rates of divorce, unemployment, domestic violence, and homelessness increase.

Unfortunately, fear of stigma and of treatment side effects has kept half of those who have neurological or psychiatric problems from seeking medical care (Tanielian and Jaycox, 2008). Moreover, only half of those who seek care receive even minimally effective treatment. Given that not treating these conditions costs the nation more than treatment would, the RAND report calls for a substantial investment in medical care for PTSD, TBI, and major depression among veterans. The report also calls for increased funding of programs designed to reduce the perceived and real career consequences of seeking such care.

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Since the 15th century, doctors had recognized syphilis as a discrete disease. Because of its mild initial symptoms, however, only in the late 19th century did doctors realize the full damage syphilis can inflict on the nervous system, including blindness, deformity, insanity, and death. Unfortunately, doctors could do little to help those with syphilis. The best available treatment consisted, essentially, of poi- soning patients with arsenic and other heavy metals in the hopes that these poisons would kill whatever had caused the disease before they killed the patients.

In 1905, scientists first identified the bacterium Treponema pallidum as the cause of syphilis. Five years later, Paul Ehrlich discovered the drug Salvarsan as a cure for syphilis. An arsenic derivative, Salvarsan was the first drug to successfully target a specific microorganism. As such, it opened the modern era of medical therapeutics. After this point, those who sought early treatment for syphilis could expect a complete cure, whereas those who put off treatment risked irreversible neurological damage and a horrible death.

The history of Salvarsan and syphilis provided ideological support for a med- ical model of mental illness. This medical model consists of four assumptions about the nature of mental illness (Scheff, 1984):

1. Objectively measurable conditions define mental illness, in the same way that the presence of a specific bacterium defines syphilis.

2. Mental illness stems largely or solely from something within individual psychology or biology, even if doctors (such as those who studied syphilis before 1905) don’t yet know its sources.

3. Mental illness, like syphilis, will worsen if left untreated but may diminish or disappear if treated promptly by a medical authority.

4. Treating mental illness, like treating syphilis, rarely harms patients, so it is safer to treat someone who might really be healthy than refrain from treating someone who might really be ill.

The Sociological Model of Mental Illness

The sociological model of mental illness questions each of these assumptions (see “Key Concepts: Models of Mental Illness,” p. 147). Perhaps most important, sociol- ogists argue that definitions of mental illness, like the definitions of physical illness and disability discussed in Chapters 5 and 6, reflect subjective social judgments more than objective scientific measurements of biological problems.

What do we mean when we say someone is mentally ill? Why do we diagnose as mentally ill people as disparate as a teenager who uses drugs, a woman who hears voices, and a man who tries to kill himself? According to sociologist Allan Horwitz (1982), behavior becomes labeled mental illness when persons in posi- tions of power consider that behavior both unacceptable and inherently incom- prehensible. In contrast, we tend to define behavior as crime when we consider it unacceptable but comprehensible; we don’t approve of theft, but we understand greed as a motive. (The judgment of “not guilty by reason of insanity” falls on the border between crime and mental illness.) Similarly, we might not understand

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why, for example, physicists might check and recheck measurements multiple times per hour, but we assume that those with appropriate training consider these behaviors reasonable.

According to Peggy Thoits (1985), behavior leads to the label of mental illness when it violates cognitive norms, performance norms, or feeling norms. Someone who thinks he is Napoleon Bonaparte, for example, breaks cognitive norms (i.e., norms regarding how a person should think), and someone who can’t hold a job breaks norms regarding proper role performance. Thoits argues that the last category—breaking feeling norms—accounts for most behavior labeled mental illness. Feeling norms refer to socially defined expectations regarding the “range, intensity, and duration of feelings that are appropriate to given situations” and regarding how people should express those feelings (Thoits, 1985:224). For example, laughing is highly inappropriate at a Methodist funeral but perfectly acceptable at an Irish wake, and feeling sad that your pet cat died is considered reasonable for a few days but unreasonable after a year.

Different social groups consider different behaviors comprehensible and ac- ceptable. The friends of a drug-using teenager, for example, might consider drug use a reasonable way to reduce stress or have fun. Their views, however, have little impact on public definitions of drug use. Similarly, members of one church might consider a woman who reports talking to Jesus a saint, whereas members of another church would consider her mentally ill. The woman’s fate will depend on how much power these opposing groups have over her life. The definition of mental illness, then, reflects not only socially accepted ideas regarding behavior but also the relative power of those who hold opposing ideas.

Researchers who use this sociological definition of mental illness don’t mean to imply that emotional distress does not exist or that people don’t feel real pain

Models of Mental Illness

The Medical Model The Sociological Model

Mental illness is defined by objectively measurable conditions.

Mental illness is defined through subjective social judgments.

Mental illness stems largely or solely from something within individual psychology or biology.

Mental illness reflects a particular social setting as well as individual behavior or biology.

Mental illness will worsen if left untreated but may improve or disappear if treated promptly by a medical authority.

Persons labeled mentally ill may experience improvement regardless of treatment, and treatment may not help.

Medical treatment of mental illness can never harm patients.

Medical treatment for mental illness can sometimes harm patients.

KEY CONCEPTS

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when they can’t meet social expectations for thought, behavior, or emotions. Nor do these researchers mean to imply that biology has no effect on behavior or thought. They do, however, question the purpose and consequences of using med- ical language to describe such problems, and they question why we label certain behaviors and individuals but not others.

Not all sociologists raise these questions, however. Many, especially those working in health care settings and in epidemiology, use a sociology in med- icine approach and use essentially medical definitions of mental illness in their research and writing. Nevertheless, sociologists are united in assuming that mental illness, like physical illness and disability, stems at least partially from social life rather than solely from individual psychology or biology.

The Problem of Diagnosis

The sociological model of mental illness gains credibility when we look at re- search on the problems with psychiatric diagnosis. These problems became a po- litical embarrassment for psychiatrists (medical doctors who specialize in treating mental illness) after a famous experiment by psychologist David Rosenhan (1973). Rosenhan and seven of his assistants had presented themselves to 12 mental hos- pitals and complained of hearing voices but otherwise acted normally. The hos- pitals diagnosed all eight “pseudopatients” as mentally ill and admitted them for treatment. After they were admitted, all behaved normally, leading 30% of the other patients to identify them as frauds. The staff, however, never noticed anything unusual about these pseudopatients. It took an average of 19 days for them to win their release, with their symptoms declared “in remission.”

When these results were published, psychiatrists objected vociferously that the results were some sort of fluke. In response, Rosenhan agreed to send pseudopa- tients to another hospital and challenged the staff at that hospital to identify the pseudopatients. During the three months of the experiment, the staff identified 42% of their new patients as pseudopatients even though Rosenhan really had not sent any!

These two experiments vividly demonstrate the subjective nature of psychi- atric diagnosis and its susceptibility to social expectations. Within the context of a mental hospital, staff members quite reasonably assume patients are ill and inter- pret everything patients do accordingly. When, for example, one bored pseudopa- tient began taking notes, a worker officially recorded this “note-taking behavior” as a symptom. Conversely, when staff members expected to find pseudopatients, they interpreted similar behaviors as signs of mental health.

The problems with diagnosis are particularly acute when therapists and pa- tients lack a shared culture. With the rise in immigration to the United States over the past generation, doctors increasingly must diagnose and treat patients whose symptoms don’t even appear in Western textbooks (Goleman, 1995). For exam- ple, a common symptom of psychological problems in Japan is a debilitating fear that one’s body will embarrass someone else, while a common symptom among Malaysian men is intense fear that their penises will recede into the body and

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somehow kill them. The American Psychiatric Association (APA) now offers all its members materials designed to help them consider cultural and ethnic factors in their work and require training programs to cover cross-cultural issues (American Psychiatric Association, 2018).

The Politics of Diagnosis

Over the years, psychiatrists have worked to reduce problems with diagnosis by re- fining the definitions of illnesses in the Diagnostic and Statistical Manual of Men- tal Disorders (DSM), first published by the APA in 1952. Virtually all psychiatrists use this manual for assigning diagnoses, as do most other clinicians, because insurers usually require a DSM diagnosis before they will reimburse clinicians for care.

The DSM and the subsequent DSM-II, published in 1968, instructed clini- cians to reach diagnoses based on the clinicians’ inferences about such intrapsychic processes as defenses, repression, and transference. Because clinicians can’t measure these processes, the same behavior often elicited quite different diagnoses from different clinicians (Helzer et al., 1977).

Partly because of these problems, in 1974, the APA announced its decision to revise the DSM-II (Spitzer, Williams, and Skodol, 1980). Ironically, although the resulting DSM-III, published in 1980, was designed to quiet questions about the ambiguities of psychiatric diagnosis, it instead illuminated those ambiguities because its writing became an overtly political battle involving active lobbying by both professional and lay groups (Grob and Horwitz, 2009). This battle revealed wide differences among clinicians regarding what behaviors signified mental ill- ness, what caused those behaviors, who should treat them, and how they should be treated.

To encourage support for the DSM-III and avoid open political battles among psychiatrists, its authors decided to stress symptomatology and avoid discussing either causation or treatment (Kirk, 1992). In addition, to increase the odds that clinicians would use the DSM-III, the authors described the various diagnoses based not on available research but on the consensus among practicing psychia- trists. These two strategies, they hoped, would produce a widely used and highly reliable document. Reliability refers to the likelihood that different people who use the same measure will reach the same conclusions—in this case, that differ- ent clinicians, seeing the same patient, would reach the same diagnosis. Yet even this modest goal was not achieved because studies continue to find high rates of disagreement over diagnosis (Kirk, 1992; Mirowsky and Ross, 1989). Moreover, reliability in the absence of validity is not particularly useful. Validity refers to the likelihood that a given measure accurately reflects what those who use the measure believe it reflects—in this case, that persons identified by the DSM-III as having a certain illness actually have that illness. As Phil Brown (1990:393) notes, “Anyone can achieve . . . reliability by teaching all people the ‘wrong’ material, and getting them to all agree on it. . . . The witch trials [of earlier centuries] showed a much higher degree of interrater reliability than any DSM category, yet we would not impute any validity to those social diagnoses.”

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Despite all of these problems, the DSM-III and the subsequent DSM-IV gained great support among clinicians because they served clinicians’ political needs (Horwitz, 2002). By stressing (even if inaccurately) the “objective” nature of diagnosis, clinicians were able to gain respect in the medical world, access to reimbursement from insurance companies, and funding from agencies that sponsor research. And by assigning almost 400 discrete diagnoses to all the different client groups and combinations of symptoms treated by different types of clinicians, they could gain widespread acceptance of the system from both clinicians and clients.

The current DSM-V was published in 2013. As with previous editions, crit- ics argue that evidence for the validity of diagnostic categories remains limited and that the new edition will lead to further medicalization and overtreatment of everyday life struggles (Frances, 2012). For example, unlike DSM-IV, DSM-V defines ordinary forgetfulness among older adults, grieving for more than two months after a loved one dies, and what many would describe as “temper tan- trums” as new forms of mental illness.

A HISTORY OF TREATMENT

The history of treatment for mental illness further reveals the role social values play in medical responses to problematic behavior. In this section, we trace the treatment of mental illness from the prescientific era to the present.

Before the Scientific Era

Although the concept of mental illness is relatively new, all societies throughout history have had individuals whose behavior set them apart as unacceptably and incomprehensibly different. However, premodern societies more often could find informal ways of coping with such individuals (Horwitz, 1982). First, premodern societies could offer acceptable, low-level roles to those whose thought patterns and behaviors differed from the norm. Second, because work roles rarely required individuals to function in highly structured and regimented ways, many troubled individuals could perform at marginally acceptable levels. Third, in premodern societies, work occurred within the context of the family, whether at home or in fields or forests. As a result, families could watch over those whose emotional or cognitive problems interfered with their abilities to care for themselves. These three factors enabled families to normalize mental illness—that is, to dismiss problematic behavior as mere eccentricity. As a result, unless individuals behaved violently or caused problems for civil authorities, their families and communities could deal with them informally.

In some cases, however, individuals behaved too unacceptably or incompre- hensibly for their communities to normalize. In these cases—and as with all ill- nesses (as described in Chapter 5)—communities needed to find explanations to help them understand why such problems struck some people and not others. Such explanations helped to make the world seem more predictable and safe by

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convincing the community that such bad things would never happen to “good people” like themselves.

Until the modern scientific age, people typically viewed disturbing behavior as a punishment for sin or for violating a taboo, as a sign that the afflicted individ- ual was a witch, or as a result of evildoing by devils, spirits, or witches. Therefore, the public assigned treatment to religious authorities—whether shamans, witch doctors, or priests—who relied on prayer, exorcism, spells, and treatments such as bloodletting or trepanning (drilling a hole in the skull to let “bad spirits” out). Re- ligious control of socially disturbing behavior reached a spectacular climax with the witchcraft trials of the 15th to 17th centuries, during which religious author- ities brutally killed at least 100,000 people, including some we would now label as mentally ill (Barstow, 1994).

As a capitalist economy began to develop, both religious control and in- formal social control began to decline (Horwitz, 1982; Scull, 1977). Under capitalism, work moved from home and farm to workshops and factories, mak- ing it more difficult for families to care informally for problematic relatives. In addition, a capitalist economy could less readily absorb those whose produc- tivity could not be scheduled and regimented. At the same time, widespread migration from the countryside to cities weakened families and other social support systems, as did migration from Europe to the United States in subse- quent centuries. Meanwhile, other changes in society weakened religious sys- tems of social control.

These changes fostered a need for new, formal institutions to address mental illness. By the end of the 18th century, however, only a few hospitals devoted to treating people with mental illnesses existed along with a few private “madhouses” run by doctors for profit. Instead, most of those we would now label mentally ill were housed with poor people, people with disabilities, and criminals in the newly opened network of public almshouses, or poorhouses.

Conditions in both almshouses and madhouses were generally miserable, but they were especially bad for those considered mentally ill. Doctors and the public typically believed that persons with mental illness were incur- able and were essentially animals. As a result, institutions treated people with mental illnesses like animals—chaining them for years to basement walls or cells, often without clothing or proper food, and beating them if they caused problems.

The Rise and Decline of Moral Treatment

By the late 18th century, however, attitudes toward persons with mental illness began to moderate (Scull, 1989:96–117). In place of punishment and warehous- ing, reformers proposed moral treatment: teaching individuals to live in society by showing them kindness, giving them opportunities to work and play, and in general treating mental illness more as a moral rather than medical issue. The stun- ning successes that resulted convinced the public that mental illness was curable. The first American hospital designed to provide moral treatment, the Friends’ (or Quakers’) Asylum, was founded in 1817.

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Despite this strong beginning, moral treatment in the end could not compete with medical models of mental illness (Scull, 1989:137–161). Because those who promoted moral treatment continued to use the language of medicine to talk of illnesses and cures, medical doctors could argue successfully that only they should control this field. In addition, because moral treatment required only kindness and sensitivity, which theoretically any professionals could offer, no professional group could claim greater expertise than doctors. As a result, by 1840, doctors largely had gained control over the field of mental illness both in the United States and Europe.

As care gradually shifted from laypersons to doctors, custodial care began to replace moral treatment. This shift reflected the growing belief that illness was genetic and untreatable, as well as the public’s greater interest in controlling people with mental illnesses—especially if they were poor, nonwhite, or immigrant— rather than treating them.

By the 1870s, moral treatment had been abandoned. Yet the number of men- tal hospitals continued to grow exponentially (Rothman, 1971). Historians re- fer to this change, and similar but earlier developments in Europe, as the Great Confinement.

Benjamin Rush, the “father of American psychiatry,” invented this device to treat mental illness through removing distractions from the patient.

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The Great Confinement drew energy from the well-meaning efforts of re- formers to close down the brutal almshouses and provide facilities specifically de- signed to care for people with mental illnesses instead of warehousing them with criminals, persons with disabilities, and poor people (Sutton, 1991). Because no agreed-upon definitions of mental illness existed, however, families and commu- nities found it relatively easy to move the troublesome, poor, old, or sick into the newly established mental hospitals (Sutton, 1991). As a result, most of those labeled mentally ill continued to find themselves housed with others whom society had rejected. The only difference was that instead of residing in institutions filled with a varied group of marginalized individuals, they now lived in large institutions officially devoted to the “care” of people with mental illnesses.

Freud and Psychoanalysis

By the beginning of the 20th century, then, doctors controlled the mental illness field. Yet doctors were deeply divided between those who assumed mental ill- ness stemmed from psychological causes and those who assumed it had biological causes.

This split grew wider with the rise of Freudian psychiatry. According to Sig- mund Freud, a Viennese doctor, to become a mentally healthy adult, one had to respond successfully to a series of developmental issues. Each issue occurred at a specific stage, with each stage linked to biological changes in the body and in- vested with sexual meanings. For example, Freud believed that during the phallic stage (ages three through six) boys naturally begin noticing genitalia, experiencing sexual attraction toward their mothers, and therefore viewing their fathers as rivals. To become healthy adults, he argued, boys had to conclude that girls lack penises because their fathers castrated them after some wrongdoing. To avoid the same fate, boys must abandon their attraction for their mothers and instead pursue their fathers’ love by adopting their fathers’ values. Through this process, Freud argued, boys develop a strong internal sense of morality—something that girls, lacking penises, can never do.

Freud based this theory on his interpretations of the lives and dreams of his upper-middle-class patients; no scientific data underpin this theory. Looking back at this theory from the present, it is hard to comprehend how anyone could have believed in such notions. Yet the theory remained popular for decades, undoubt- edly because it both reflected and supported popular ideas about men’s superior bodies, intellect, and moral virtues.

For those who accepted Freud’s theory, the only way to cure mental illness was to help patients resolve their developmental crises. To do so, Freud and his followers relied on psychoanalysis, a time-consuming and expensive form of psy- chotherapy geared to patients without major mental illnesses. In psychoanalysis, patients recounted their dreams and told a (usually silent) therapist whatever came to mind for the purpose of recovering hidden early memories and understanding their unconscious motivations.

Because psychoanalysis was so costly, few people could afford to use it. By the 1950s, most mental patients instead received new, far cheaper physical interventions

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such as electroconvulsive (shock) therapy or lobotomies (Valenstein, 1986). Nei- ther therapy received scientific testing before becoming popular and both could cause brain damage (Valenstein, 1986). At any rate, therapy of any sort occupied only a minuscule proportion of patients’ time in mental hospitals. Instead, patients spent their days locked in crowded wards with little other than radios or televi- sions to ease their boredom.

The Antipsychiatry Critique

By the middle of the 20th century, mental hospitals had become a huge and largely unsuccessful system (Mechanic, 1989). Patients with mental illnesses occupied half of all hospital beds in the United States. Virtually all were kept in public mental hospi- tals; insurance rarely covered mental health care, so private hospitals had no interest in the field. At their peak in 1955, public mental hospitals held 558,000 patients, who stayed an average of eight years. Most were involuntarily confined and involuntarily treated, often with lobotomies as well as drugs that kept them highly sedated.

Beginning in the 1960s, however, many people challenged this system as the civil rights, antiwar, and feminist movements all promoted both individual rights and questioning authority. These ideas contributed to a growing critique of mental health treatment by sociologists, psychologists, and even some psychiatrists such as R. D. Laing (1967).

One of the most powerful critiques of large mental institutions appeared in a classic study by sociologist Erving Goffman (1961). Goffman’s work fell within the tradition of symbolic interactionism theory. According to this theory, individual identity develops through an ongoing process in which individuals see themselves through the eyes of others and learn through social interactions to adopt the values of their community and to measure themselves against those values. In this way, a self-fulfilling prophecy is created through which individuals become what they are already believed to be. So, for example, children who constantly hear that they are too stupid to succeed in school might conclude that it is senseless to attend classes or study. As a result, they fail in school, thus fulfilling the prophecies about them.

Goffman used symbolic interactionism theory to analyze mental hospitals and the experiences of mental patients. He pointed out that mental hospitals—like the military, prisons, and monasteries—were total institutions in which a large number of individuals lead highly regimented lives segregated from the outside world. Goffman argued that these institutions necessarily led to mortification— that is, individuals’ sense of self was damaged and replaced by personalities adapted to institutional life.

Several aspects of institutional life foster mortification. Persons confined to mental hospitals lose the supports that usually give people a sense of self. Cut off from work and family, these individuals’ only available role is that of patient. That role, meanwhile, is a master status—a status considered so central that it overwhelms all other aspects of individual identity. Within the mental hospital, a patient is viewed solely as a patient—not as a mother or father, husband or wife, worker or student, radical or conservative. According to Goffman’s observa- tions, and as in Rosenhan’s (1973) experiment, all behavior becomes interpreted

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through the lens of illness. In addition, because each staff member must manage many patients, staff members lack the time to individualize care. In these circum- stances, patients typically lose the right to choose what to wear, when to awaken or sleep, when and what to eat, and so on. Moreover, all of these activities occur in the company of many others. Individuals thus not only experience a sense of powerlessness but also can lose a sense of their identity—their desires, needs, and personalities—in the mass of others. As a result, patients experience depersonalization—a feeling that they no longer are fully human or no longer considered fully human by others. At the same time, the hierarchical nature of mental hospitals reinforces the distinctions between inmates and staff and con- stantly reminds all parties of the gulf between them. Consequently, patients can avoid punishment and eventually win release only by stifling their individuality and accepting the institution’s beliefs and rules. These forces producing mortifica- tion are so strong that even Rosenhan’s pseudopatients—knowing themselves sane and hospitalized only briefly—experienced depersonalization.

Implicit in Goffman’s work is the idea that mental hospitals may be one of the worst environments for treating mental problems. Later research sup- ports this conclusion. A review of 10 controlled studies on alternatives to hospitalization—including halfway houses, day care, and supervised group apartments—found that all could boast equal or better results than those of tra- ditional hospitalization, as measured by subsequent employment, reintegration into the community, life satisfaction, and extent of symptomatology (Kiesler and Sibulkin, 1987).

Deinstitutionalization

By the time the antipsychiatry critique appeared, the Great Confinement already had begun to wane. Beginning in 1955, the number of mental hospital inmates declined steadily as treatment shifted from inpatient care (in hospitals) to outpa- tient care. This process of moving mental health care away from large institutions, known as deinstitutionalization, gained further support during the 1970s as mental patients successfully fought in the courts against involuntary treatment, against hospitals that provided custodial care rather than therapy, and for the right to treatment in the “least restrictive setting” appropriate for their care.

Those who adopt a medical model of illness typically assume that deinstitu- tionalization resulted from the introduction, beginning in 1954, of various drugs that were believed to reduce severe psychiatric symptoms. Yet the number of pa- tients in public mental hospitals did not fall rapidly until more than a decade after these drugs were introduced. In fact, the sharp decline in institutionalization is better explained by changes in federal funding that enabled some chronically mentally ill persons to live on their own while encouraging nursing homes and private hospitals to seek other chronically mentally ill persons as residents—paid for by the federal government (Mechanic, 1999; Mechanic and Rochefort, 1990).

Unfortunately, the promise that deinstitutionalization would herald a new era in which individuals would receive appropriate therapy in the community and avoid the stigma, degradation, and mortification of mental hospitalization has

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been met only partially. Few services are available outside of psychiatric hospitals to help individuals who have serious mental illnesses (Kessler et al., 2005b).

Meanwhile, as government funding for the nation’s health care system de- clined, funding for the criminal justice system dramatically increased (Human Rights Watch, 2009). As a result, public mental hospitals now find that they can most easily pay their bills by accepting patients sent to them by the criminal justice system, whether mentally ill prison inmates, people found innocent by reason of insanity, or “sex predators,” who under recent laws can be involuntarily confined even after finishing their sentences. These changes reflect the continuing stigma of mental illness. “Ethical Debate: Mental Illness and Gun Control,” further illustrates the consequences of that stigma.

Simultaneously with these changes, the federal government also reduced fund- ing for low-income housing. As a result, many mentally ill persons who can’t afford treatment also can’t find housing. Consequently, many persons with chronic mental illness now cycle between homelessness, jail time when they prove troublesome for local authorities, and brief stays in public mental hospitals (Earley, 2007). According to the U.S. Department of Justice, more than 40% of jail inmates and 30% of prison inmates have a history of mental illness (Bureau of Justice Statistics, 2017).

Despite these severe gaps in our mental health system, however, observers generally agree that deinstitutionalization improved the quality of life for most seriously mentally ill persons (Grob, 1997).

Mental Illness and Gun Control

In February 2018, Nikolas Cruz went on a shooting spree in his Parkland, Florida, high school, killing 17 people and injuring another 17 within less than an hour.

It is not surprising that many stricter laws (or stricter enforcement of laws) to keep guns out of the hands of persons with mental illnesses.

In fact, federal law already forbids persons who have ever been declared mentally ill from owning guns. However, compliance with the law—which is based on voluntary reporting by mental health professionals to a national database—is low. But murder rates in the United States are far too high, and if such laws could reduce these deaths, enacting them would appear to be the ethical thing to do.

On the other hand, forbidding gun ownership based on a history of mental illness raises various ethical (and practical) issues. Most important, most persons with mental illness have never committed a violent act. In fact, mental illness is a poor predictor of violence (Kangas and Calvert, 2014; McGinty et al., 2014). Instead, the best predictors of violence are previous arrests for behaviors such as domestic violence, assault, or dangerously inappropriate behavior while drunk (Kangas and Calvert, 2014; McGinty et al., 2014).

In addition, if mental health professionals are legally forced to report individuals to a national database, potential clients may shy away from treatment. Meanwhile, those already in treatment may feel betrayed if they learn that their doctors or counselors reported them, and they may decide to break off treatment. Yet treatment can help individuals recover from mental illness and reduce suicidal or homicidal thoughts (Kangas and Calvert, 2014).

ETHICAL DEBATE

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The Rise of Managed Care

Beginning in the 1990s, insurance coverage for mental illness started to become more common, primarily through managed care organizations (MCOs). Managed care is described more fully in Chapter 8 but essentially refers to any system that controls health care spending by closely monitoring where patients re- ceive health care, what sorts of providers patients use, what treatments they receive, and with what consequences.

Research suggests that managed care can reduce the costs of mental health treatment, at least for less severe illnesses, by encouraging shorter rather than longer inpatient stays, outpatient rather than inpatient care, conservative rather than aggressive interventions, and use of lower-level clinicians (such as social workers) rather than psychologists or psychiatrists (Mechanic, 1995, 1999:160–162). According to David Mechanic, probably the most influential sociologist in the area of mental health care, it also may be able to improve the quality of care:

By reducing inpatient admissions and length of stay, managed care programs potentially make available considerable resources for substitute services and other types of care. Managed care provides incentives to seek closer integration between inpatient and outpatient and primary and specialized services to achieve cost-effective substitutions.

Finally, laws that link mental illness with violence can increase the stigma experienced by those who live with it. Moreover, that stigma may be lifelong: It is hard to imagine how any national database could institute procedures for reliably identifying individuals who have recovered from mental illness and for removing those individuals’ names from the database. Certainly, no such procedures exist currently. Thus, legal requirements to report clients would in some cases require health care workers to break professional codes of ethics that require them to preserve confidentiality and to avoid harming their clients (Kangas and Calvert, 2014).

Sociological Questions

1. What social views and values about mental illness are reflected in laws and proposals aimed at keeping guns away from those diagnosed with it?

2. Who benefits from these laws and proposed laws? Why would the National Rifle Association favor them? Why aren’t there more proposals to forbid gun ownership among those convicted of domestic violence or of drunken behavior?

3. What are the intended consequences of prohibiting gun ownership among individuals diagnosed with mental illness? What are the potential unintended social, economic, political, and health consequences of this policy?

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Managed care also offers the potential to bring . . . science-based mental health care into the mental health system more quickly than traditional programs. . . . Many individual practitioners resist practice guidelines and scientific findings, preferring their own clinical experience, but managed care can put systems in place to measure performance and to enforce adherence to established standards. (1997:45–46)

But managed care also carries risks. Its emphasis on cost containment affects who offers mental health services, for how long, and of what type (Scheid, 2001). MCOs encourage the use of clinicians who charge less per hour, preferring those with master’s degrees to those with doctorates and preferring those with doctor- ates to those with medical degrees. To further restrain costs, MCOs press clinicians to offer only short-term treatment of immediate problems rather than long-term treatment of underlying problems. As a result, therapists increasingly prescribe medications even if “talk therapies” might be more useful.

Managed care also has affected how mental disorders are diagnosed. One way managed care controls costs is by deciding in advance, based on data from past patients, how much and what type of care patients with specific diagnoses should receive. For this system to work, clinicians must assign a diagnosis to each patient. This in turn reinforces the medical model of mental illness and the idea that every person who seeks mental health services has a specific, diagnosable mental illness.

At the same time, to contain costs, MCOs have often opposed both new di- agnoses and any broadening of the criteria for existing diagnoses (Horwitz, 2002). For example, some MCOs deny treatment to individuals who have fewer than five symptoms on a depression checklist even if individuals’ listed symptoms are severe and even if they have other, unlisted symptoms.

The Remedicalization of Mental Illness

Despite the efforts of MCOs to limit psychiatric diagnoses and treatment, recent years have seen a new remedicalization of mental illness (Carlat, 2010; Kirsch, 2011). Psychiatrists have continued to develop new treatments as well as new the- ories of mental illness that downplay any social causes and instead stress biochemi- cal, neurological, or genetic abnormalities. Meanwhile, the mass media along with the medical and pharmaceutical establishments have “sold” the medicalization of mental illness to the public (Conrad, 2005, 2013); the majority of the public now believe that mental illness is a biological problem (Pescosolido, 2013).

Yet the data for the “biological revolution” in mental health is weak. Despite decades of research, scientists have failed to find evidence demonstrating any brain abnormalities that might explain mental illness (Carlat, 2010; Kirsch, 2011). More- over, to the extent that brains of those labeled mentally ill differ from those of other people, the differences appear to be caused either by the drugs used to treat mental illness or by other factors such as poor nutrition.

Despite these weaknesses in the biological model of mental illness, most psy- chiatrists have adopted it (Whitaker, 2011). As a result, psychiatrists now present

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a more united front in their struggles for control against other mental health occupations such as psychology and social work. In addition, they have increased their political power relative to these other occupations because, having declared mental illness a biological problem, they now can argue that only persons trained in medicine can properly diagnose and treat it (Brown, 1990).

Reflecting this medical model, both psychiatrists and psychologists now of- ten rely on psychoactive drugs to both diagnose and treat mental illness (Grob and Horwitz, 2009). For example, doctors now commonly diagnose patients with clinical depression whenever patients respond favorably to antidepressant drugs such as Prozac, even if the patients don’t meet standard criteria for that diagnosis. Yet most people feel better whenever they take a mood-enhancing drug, whether it is Prozac or cocaine. And many people feel better even if they are given only a placebo.

Most of the drugs now used to treat persons with mental illness fall into one of three main categories: antipsychotics, mood stabilizers, or antidepressants. The use of antidepressants has grown particularly rapidly, especially among women, as Table 7.2 shows (National Center for Health Statistics).

Compared to older drugs for depression, the most common current antidepressants—known as selective serotonin reuptake inhibitors (SSRIs)—carry fewer side effects and can’t be taken to commit suicide, although they increase the odds of committing suicide by some other means. Moreover, statistical analyses based on all data from research on SSRIs—rather than only on data that phar- maceutical companies choose to publish—suggest that the drugs may offer no benefits at all: When patients in research studies are given either drugs or placebos that carry the same side effects as the drugs, both the placebos and drugs are mildly effective (Kirsch, 2011). Moreover, in the long run the drugs may cause harm by changing the brain’s ability to moderate emotions (Whitaker, 2011). Nevertheless,

Antidepressant Use in the Past 30 Days, United StatesTABLE 7.2

Use of antidepressants has climbed dramatically since the 1980s, especially among women and those over age 45.

Year

1988–1994 (%) 1999–2002 (%) 2003–2006 (%) 2007–2010 (%)

Men

18–44 years 1.0* 3.6 3.5 4.4

45–64 years 2.3* 7.0 10.5 8.9

65 years and over 2.3* 7.2 9.8 9.4

Women

18–44 years 2.3 8.5 11.4 11.3

45–64 years 4.6 13.8 20.9 19.6

65 years and over 3.5 10.8 13.7 17.0

*Age-adjusted data, for civilian noninstitutionalized population only.

SOURCE: National Center for Health Statistics (2017a)

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drug companies have proven highly successful at convincing both consumers and clinicians to redefine normal shyness as “social anxiety disorder” and to believe that it is best treated with SSRIs (Abramson, 2004; Lane, 2007).

Serious questions have also been raised about the increased use of antipsy- chotics. These drugs are now the top-selling drugs in the United States despite potential side effects that include depression, uncontrollable drooling, and obesity. Moreover, doctors increasingly prescribe them to children, even though the drugs have only been tested on adults. Nevertheless, between 2000 and 2007, usage of antipsychotics doubled among children under age five who had private insurance, although most experts believe that the diseases these drugs were designed to treat (such as schizophrenia) rarely begin before adolescence (Wilson, 2010a).

Mental Health and the Affordable Care Act

As the remedicalization of mental illness changed Americans’ ideas about the men- tal health, public and political pressure grew to put mental health care on a par with physical health care. This view was made law in the 2010 Affordable Care Act (ACA) (discussed further in Chapter 8). Under the ACA, both private insurers and Medicaid (the government-funded insurance program for the poorest Amer- icans) were required to offer comparable coverage for mental and physical health problems, thus increasing coverage for many Americans.

At the same time, by definition the ACA could not help the many Americans who lack any health insurance. In addition, even those with insurance still often find it difficult to obtain care because many providers will not take new patients, accept only certain insurance plans, or take only patients who can pay out of pocket (NAMI, 2016). Meanwhile, many elected officials are pushing to end or drastically reduce the ACA, which would lead to a dramatic reduction in coverage.

Recent Challenges to Medical Diagnoses and Treatment

Over the last decade, two challenges to the current diagnostic and treatment sys- tems have emerged (Luhrman, 2015). First, the British Psychological Society (BPS) published two major position statements essentially calling for the abandonment of the very idea of psychiatric diagnosis—at least for bipolar disorder, depression, schizophrenia, and psychosis (Cooke, 2017; Jones, 2010). The BPS argued that the feelings and experiences we label as symptoms of mental illness (such as sadness, elation, mood swings, paranoia, even hallucinations and hearing voices) are not uncommon. Instead, they occur widely and on a spectrum, with no clear dividing line between health and illness. Even among those we might label mentally ill, many experience only mild “symptoms” and are able to maintain a normal life. Moreover, these “symptoms” seem more clearly caused by deprivation and trauma than by any biological conditions. As a result, the BPS argued, individuals can best be aided by talking with therapists who help them make sense of their experiences without assigning diagnoses and who prescribe psychiatric drugs only briefly if at all. This philosophy underlies the work of the Hearing Voices Network, which offers both professional help and peer support to those who hear voices.

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Second, in 2013 the director of the U.S. National Institute for Mental Health declared that years of scientific research had failed to find any specific biological markers for any psychiatric diagnoses. As a result, the institute would no longer fund research based on diagnostic categories and would instead focus on how genes, cells, and other biological elements may regulate emotions and behaviors in all people, not just those diagnosed with a mental illness. Three years later, how- ever, an article published in Nature—the top journal in the biological sciences— reported that a set of genes had been identified that significantly increased the risk of schizophrenia (Sekar et al., 2016). These findings may reinvigorate interest in biological research into mental illness if they prove to be accurate—unlike previ- ous reports linking schizophrenia to genes.

THE EXPERIENCE OF MENTAL ILLNESS

The previous sections described the nature, causes, distribution, treatment, and history of mental illness. Next, we look at the experience of mental illness.

Becoming a Mental Patient

As already noted, in any given year, 31% of working-age adults experience a diag- nosable mental illness, but only 40% of these receive even basic treatment (Kessler et al., 2005a, 2005b). Ironically, as the stigma among the middle class against seeking counseling for minor problems has diminished and insurance coverage has increased, treatment has increased among basically well-functioning individuals who experience situational stress, sadness, or lowered self-esteem (Kessler et al., 2005b). Nearly half of those who receive outpatient treatment have no mental disorder that can be identified through surveys, although some of these might have disorders that could be identified by clinicians (Kessler et al., 2005b).

What explains this discrepancy between experiencing symptoms and receiv- ing treatment? According to Allan Horwitz, “Symptoms of mental disorder are usually vague, ambiguous, and open to a number of varying interpretations. . . . Labels of ‘mental illness,’ ‘madness,’ or ‘psychological disturbance’ are applied only after alternative interpretations have failed to make sense of the behavior” (1982:31). The key questions, then, are how and why does this happen?

Self-Labeling Regardless of how others define their situation, at least initially, individuals usually define themselves as mentally healthy. Doing so is especially common among individuals whose symptoms are mild, who have never been treated for mental illness, who believe treatment would be stigmatizing, and who still hold culturally valued roles as parents, workers, and the like (Thoits, 2016). Individuals may downplay their situations as “problems” rather than illness; offer alternative explanations for their behavior and emotions (“anyone would be angry in these circumstances”); distract themselves from their troubles through alco- hol, drugs, or a range of activities; and reject any psychiatric diagnoses offered by friends, family members, or mental health workers as inaccurate or biased (Karp

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and Birk, 2013; Moses, 2009; Thoits, 2016). For example, one 14-year-old boy who was receiving treatment told an interviewer:

I have problems I need to work through, but other than that, I’m fine. Just regular family problems and daily personal problems. I don’t consider those big issues where I need to take medication for it. Other people see that for me, but I think the medication is just making it worse. (Moses, 2009:574)

In addition, individuals typically try to avoid being labeled as needing psychi- atric care by engaging in feeling work: actively working to make their emotions match social expectations (Hochschild, 1983; Thoits, 1985).

Feeling work can take four forms. First, individuals can change or reinterpret the situation that is causing them to have feelings others consider inappropriate. For example, a working woman distracted from her work by worries about how to care for an ill parent—and distracted while with her parent by worries about her work—can quit her job. Second, individuals can change their emotions physiologically through drugs, meditation, biofeedback, or other methods. The woman with the ill parent, for example, could drink alcohol or take Prozac to control anxiety. Third, individuals can change their behavior, acting as if they feel more appropriate emotions than they really do. Fourth, individuals can re- interpret their feelings, telling themselves, for example, that they only feel tired rather than anxious.

When feeling work succeeds, individuals can avoid concluding that they need mental health care. This is most likely to happen when the situations causing the emotions are temporary and brief and when supportive others legitimize their emotions. If, for example, the woman with the ill parent has similarly situated friends who describe similar emotions, she might conclude that her emotions are understandable and acceptable.

Conversely, individuals are more likely to conclude they need psychiatric care when their emotions repeatedly fail to meet social expectations and others repeat- edly say they need help. Ironically, individuals also may conclude they need help when they succeed too well at feeling work. For example, those who rely too heavily on drugs to manage their feelings can lose control of their lives, and those who consistently reinterpret their emotions—telling themselves that they are not angry, for example, even while punching a wall or a spouse—can find that others label them crazy when their emotions and behavior don’t match. Finally, those who consistently engage in feeling work can lose the ability to interpret their feelings accurately and experience them fully. The resulting sense of numbness and alienation eventually can lead individuals to seek treatment.

Labeling by Family, Friends, and the Public Like individuals, families only reluctantly label their members mentally ill (Horwitz, 1982). Instead, families can deny that a problem exists by convincing themselves that their relative’s be- havior does not depart greatly from the norm. If they do recognize that a prob- lem exists, they can convince themselves that their relative is lazy, a drunkard, “nervous,” responding normally to stress, or experiencing physical problems

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rather than mental illness. Finally, families might recognize that their relative is experiencing mental problems but define those problems as temporary or unimportant.

Two factors explain how and why families can long ignore behavior that oth- ers would label mental illness. First, those who share cultural values, close personal relationships, and similar behavior patterns have a context for interpreting unusual behavior and therefore can interpret behavior as meaningful more easily than outsiders could. Second, families often hesitate to label one of their own for fear others will reject or devalue both the individual and the family. As a result, families have a strong motive to develop alternative and less stigmatizing explanations for problematic behavior.

Moreover, even when relatives and other intimates define an individual as mentally ill, they don’t necessarily bring the individual to treatment. Instead, they can continue to protect the individual against social sanctions through a process Lynch (1983) refers to as accommodation. Accommodation refers to “inter- actional techniques that people use to manage persons they view as persistent sources of trouble” and to avoid conflict, such as humoring problematic individu- als or minimizing contact with them (Lynch, 1983:152).

Nevertheless, despite these attempts to normalize and accommodate men- tal illness, families and friends may eventually conclude that an individual needs treatment. At that point, they must either get the individual to agree or coerce the individual into getting treatment despite his or her active resistance. One study of persons seeking care for a serious mental illness for the first time found that 42% had actively sought care and 23% had been coerced (Pescosolido, Gardner, and Lubell, 1998). Coercion was most common among those with bipolar disorder, who often enjoyed the “highs” of mania even though others regarded them as seriously disturbed, and among those with large, tight social networks. In an- other 31% of cases, families “muddled through”: Either the individuals went along with treatment decisions made by others without accepting or rejecting those decisions, or no one in the family seemed to have been in charge of the decision- making process.

Labeling by the Psychiatric Establishment Once individuals enter treatment, a different set of rules applies. Whereas the public tends to normalize behavior, mental health professionals tend to assume illness. First, because the medical model of mental illness stresses that treatment usually helps and rarely harms, it encour- ages mental health workers to define mental illness broadly. Second, because men- tal health workers see prospective patients outside of any social context, behavior that might seem reasonable in context often seems incomprehensible. This is es- pecially likely when mental health workers and prospective patients come from different social worlds, whether because they differ in gender, ethnicity, social class, or some other factor. Third, mental health workers assume that individuals would not have been brought to their attention if they did not need care. Finally, because normalization and accommodation are so common, mental health workers often don’t see individuals until the situation has reached a crisis, making it relatively easy to conclude that the individuals are mentally ill.

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Mental Illness and Identity

Similarly, at some point, most who conclude their troubles are serious also con- clude they need treatment but that being mentally ill is an important part of their identity (Karp and Birk, 2013). As one person explained to sociologists David Karp and Lara Birk:

I am a mental patient. I am a depressive. I am a depressive (said slowly and with intensity). This is my identity. I can’t separate myself from that. When people know me they’ll have to know about my psychiatric history, because that’s who I am. (2013:34)

This change in identity, even if it helps individuals find appropriate treatment, can raise difficult questions about the self. First, those considered mentally ill are often feared and rejected by others, even if their symptoms disappear over time (Link et al., 1999; Moses, 2009; Pescosolido, 2013; Schnittker, 2013). Those who identify as mentally ill typically hold the same views and thus experience increased depression, increased social isolation, and lower self-esteem (Link et al., 1999; Moses, 2009). This does not mean, however, that treatment is not worth it, but it does mean that stigma can partially cancel out its positive effects (Karp and Birk, 2013; Link et al., 1999).

Second, the goal of psychiatric treatment is to change essential components of the self: feelings, emotions, and ways of thinking. Especially when the treatment relies on external forces such as surgeries or drugs, it raises the question of whether one’s thoughts and feelings are really one’s own (Aneshensel, 2013; Karp and Birk, 2013). Am I a happy person, or am I just happy because of the drug? Am I in love with my girlfriend, or is the drug making me feel that way? And so on. Such questions can lead individuals to experiment with drugs and drug dosages to try to find a way to feel not only healthy but also truly themselves.

IMPLICATIONS

In this chapter, we have compared the sociological and medical models of mental illness. As with the medical models of physical illness and disability discussed in Chapters 5 and 6, the medical model of mental illness asserts that mental illness is a scientifically measurable and objective reality that requires prompt treatment by scientifically trained personnel. As such, this model downplays the role of social and moral values in the definition and treatment of mental illness and the effect of mortification and stigma on those who receive treatment.

We now find ourselves facing a situation uncomfortably similar to that of past centuries. As in the years before the Great Confinement, thousands of mentally ill persons now live on the streets and support themselves at least partly by beg- ging. Many more are confined in nursing homes, jails, or prisons in the same way that earlier societies confined persons with mental illness in almshouses. Although drugs largely have replaced shackles, society still allocates far too few resources to provide humanely for those with mental illnesses. Similarly, the Affordable Care

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Act expanded access to care for mental illness—but only for those who have insurance coverage. Thus, we can only hope that in the future, with a greater un- derstanding of the nature of mental illness and of the social response to it, we can develop more compassionate and effective means of coping with mental illness.

SUMMARY

1. All societies from simple to complex contain some individuals who behave in ways considered unacceptable and incomprehensible and who might be labeled mentally ill in our society.

2. During the course of a year, approximately one-third of working-age adults experience a diagnosable mental illness, with one-fifth experiencing a moderate or severe disorder.

3. Ethnicity has little effect on rates of major mental illnesses. However, African Americans are less likely than whites to develop anxiety or mood disorders but more likely to report psychological distress, perhaps partly because of the stresses imposed by racism. Hispanic Americans are less likely than whites to develop anxiety disorders, mood disorders, and substance abuse problems, perhaps because strong extended families protect against chronic stress.

4. Perhaps because of gender socialization, men consistently display higher rates of substance abuse and personality disorders, whereas women consistently display higher rates of depression and anxiety disorders.

5. Rates of both diagnosable mental illness and psychological distress increase as social class decreases. Research suggests that occasionally mental illness can cause individuals to drift into the lower classes, but much more often the chronic stresses of lower-class life lead to mental illness. Chronic social stress predicts mental illness considerably better than does acute stress, such as life events.

6. Psychological distress is less common among those with more social capital: resources available to individuals through their social network.

7. According to the medical model of mental illness, (a) objectively measurable conditions define mental illness; (b) mental illness stems largely or solely from something within individual psychology or biology; (c) mental illness will worsen if left untreated but is likely to lessen if treated promptly by a medical authority; and (d) treating mental illness rarely if ever harms patients.

8. The sociological model of mental illness argues that definitions of mental illness reflect subjective social judgments regarding whether behaviors are acceptable and understandable. Behaviors are labeled mental illness when they contravene cognitive norms, performance norms, or feeling norms.

9. Research suggests that psychiatric diagnoses are neither valid nor reliable and that the psychiatric diagnostic system has developed through an overtly political process.

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10. Premodern societies often could find informal ways of coping with individuals we would consider mentally ill. When they could not do so, they typically blamed the problem on supernatural forces. The development of a capitalist economy fostered a need for new formal social institutions to address mental illness. The 19th century’s “moral treatment” movement aimed to improve conditions at those institutions.

11. According to Sigmund Freud, mental illness occurred when children did not respond successfully to a series of early childhood developmental issues linked to the biological body. Freudian analysis was not based in scientific research and proved too costly to implement in large hospitals.

12. By the mid-20th century, most mental hospitals were huge, depersonalizing, “total institutions” that could worsen patients’ mental health. The dramatic drop in inpatient censuses at these hospitals is referred to as deinstitutionalization, which stemmed primarily from changes in federal funding rather than from improvements in medical treatment.

13. Managed care organizations control health care spending by closely monitoring patient care. They can improve care by promoting the best, most cost-effective treatments but can worsen care by pressing clinicians to offer only short-term, drug-based treatment.

14. Mental health is currently undergoing remedicalization through new psychiatric techniques for diagnosis and treatment and new theories that blame mental illness on individual biological abnormalities.

15. Rates of mental health treatment are highest among those who experience minor emotional problems or stress rather than significant mental illness. Persons with serious mental illness avoid seeking treatment when both they and their families define their behavior as comprehensible and can accommodate to that behavior. In contrast, mental health professionals tend to assume illness rather than health when they examine unusual individual behavior.

16. Based on research findings, some medical authorities now argue that much of what we call mental illness could be better treated by helping individuals make sense of their experiences rather than by giving them diagnoses and drugs. Similarly, the U.S. National Institute for Mental Health has declared that it will no longer fund any research based on diagnostic categories.

17. Although treatment can help, its benefits are reduced by the harm caused by the social stigma of mental illness.

REVIEW QUESTIONS

1. How and why do ethnicity, gender, and social class affect rates of mental illness?

2. What is the relationship between acute stress and mental illness? Between chronic stress and mental illness?

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3. What are the differences between the medical and sociological models of mental illness?

4. What are the problems embedded in psychiatric diagnoses?

5. How did premodern societies respond to and cope with individuals we would now consider mentally ill?

6. What was moral treatment, and why did it fail?

7. What was the antipsychiatry critique?

8. What were the sources and consequences of deinstitutionalization?

9. What is the remedicalization of mental illness?

10. How is managed care affecting the treatment and experience of mental illness?

11. How do individuals become mental patients? How do they avoid becoming mental patients?

12. What are the consequences of labeling an individual mentally ill?

CRITICAL THINKING QUESTIONS

1. Explain how lower social class status may foster mental illness and how mental illness can cause lower social class status.

2. What similarities and what differences are there, in both causes and consequences, between the moral treatment movement of the 19th century and the deinstitutionalization movement of the 20th century?

3. The APA’s manual of mental illnesses includes an illness called nicotine dependence. The term refers to persons who both want to stop smoking and have tried unsuccessfully to stop smoking. Describe two possible harmful consequences and two possible beneficial consequences of medicalizing this situation.

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PA RT

III

Health Care Systems, Settings,

and Technologies

Chapter 8 Health Care in the United States

Chapter 9 Health Care around the Globe

Chapter 10 Health Care Settings and Technologies

In Part II, we looked at illness primarily from the perspective of the ill individual. In this part, we move to a macrosociological level to look at health care systems and settings. In Chapter 8, we consider the history and current nature of the U.S. health care system. We examine why millions of Americans still find themselves uninsured or threatened with bankruptcy because of medical bills, as well as recent efforts to reform the U.S. health care system. Chapter 9 begins by presenting a series of measures useful for evaluating any health care system and then uses these measures to explore health care systems in six other nations—Germany, Canada, Great Britain, the People’s Republic of China, Mexico, and the Democratic Re- public of Congo. Finally, in Chapter 10, we investigate the major settings in which health care is offered in the United States (other than individual doctors’ offices) and the increasingly important role technology plays in those settings, as it simul- taneously helps solve old problems and creates new ones.

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Health Care in the

United States

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LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Discuss the history of health insurance in the United States. ● Understand the basic elements of the Affordable Care Act and its likely

impact. ● Explain why health care in the United States is so costly. ● Describe the gaps in U.S. health insurance coverage and the consequences

of those gaps.

In March 2010, Congress passed the Patient Protection and Affordable Care Act, followed a few days later by the Health Care and Education Reconciliation Act of 2010. These acts are commonly referred to jointly as Obamacare or, more neutrally, as the Affordable Care Act (ACA). Supporters argued that the acts would sig- nificantly reform the U.S. health care system. Yet that system remains both under attack and in crisis, as Peter Drier’s story illustrates:

Before his three-hour neck surgery for herniated disks in December, Peter Drier, 37, signed a pile of consent forms. A bank technology manager who had researched his insurance coverage, Mr. Drier was prepared when the bills started arriving: $56,000 from Lenox Hill Hospital in Manhattan, $4300 from the anesthesiologist and even $133,000 from his orthopedist, who he knew would accept a fraction of that fee.

He was blindsided, though, by a bill of about $117,000 from an “assistant surgeon,” a Queens-based neurosurgeon whom Mr. Drier did not recall meeting. . . . In Mr. Drier’s case, the primary surgeon, Dr. Nathaniel L. Tindal, had said he would accept a negotiated fee determined through Mr. Drier’s insurance company, which ended up being about $6200. (Mr. Drier had to pay $3000 of that to meet his deductible [the amount his insurance requires him to pay out of pocket].) But the assistant, Dr. Harrison T. Mu, was out of network and sent the $117,000 bill.

“I thought I understood the risks,” Mr. Drier, who lives in New York City, said later. “But this was just so wrong—I had no choice and no negotiating power.” (Rosenthal, 2014a)

The most basic element in any nation’s health care system is how it provides and pays for health care. As Peter’s story illustrates, however, the United States is the only more developed nation that does not guarantee affordable health care to its citizens. Nor, despite this chapter’s title, does it really have a health care system. In- stead, an agglomeration of public and private health care insurers (such as Medicaid and Aetna), health care providers (such as doctors and physical therapists), and

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health care settings (such as hospitals and nursing homes) function autonomously in myriad and often-competing ways.

In this chapter, we first look at the origins of the U.S. health insurance sys- tem. We then analyze two current crises in U.S. health care: rising costs and lack of access. Finally, we explore the nature and the impact of the health care reforms passed in 2010.

A HISTORY OF U.S. HEALTH INSURANCE

For most of U.S. history, most Americans paid for their health care out of pocket. Members of the upper class could buy any health care they wanted, the middle class could afford most needed health care, the poor mostly went without, and few questioned the system. But during the Great Depression of the 1930s, millions of Americans lost their jobs, savings, and the ability to pay for medical care. This financial crisis led to growing calls to adopt a national health care system such as those that had recently emerged in Western Europe.

Unlike in Europe, however, proposals for a national health system were sty- mied by stakeholder mobilization: organized political opposition by groups with vested interest in the outcome (Hoffman, 2012; Quadagno, 2005). This oppo- sition came from numerous sources. For example, labor unions opposed national health care because it would eliminate one of the major benefits they offered: the ability to press employers to offer affordable health insurance to workers. Mean- while, national health care also was opposed by politicians who considered it so- cialistic or who feared it would force racial integration in health care facilities.

The Birth of U.S. Health Insurance

The most important source of opposition, however, was the American Medical Association (AMA), which feared that any sort of national health system would reduce doctors’ incomes or autonomy. At the same time, however, the AMA knew that doctors’ incomes were plunging because so many Americans could no longer afford to purchase health care. Consequently, the AMA and (for similar reasons) the American Hospital Association founded the nation’s first major insurance pro- grams: Blue Shield to cover medical bills and Blue Cross to cover hospital bills (Hoffman, 2012). These two plans, collectively known as “the Blues,” continue to play an important role in the U.S. health care system, currently insuring approxi- mately one-third of all Americans (Blue Cross Blue Shield Association, 2014). Be- cause these plans freed most middle-class Americans from worrying about paying their health care bills, they significantly cut popular support for any national health system (Quadagno, 2005; Rothman, 1997).

Given that the primary purpose of the Blues was to protect hospitals’ and doctors’ incomes, the plans had little incentive to control what kinds of care were given, to whom, or at what costs. Under Blue Cross and Blue Shield, doctors and

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hospitals were free to provide whatever treatments they thought were needed, at whatever price they thought was reasonable. Patients paid their bills up front and then requested reimbursement from the Blues. Because patients were billed a fee for each office visit, test, or other service received, these plans were and are called fee-for-service insurance.

Although the primary goal of the Blues was protecting doctors’ and hospitals’ income, these plans still had to restrain costs in some way to stay financially sol- vent. To do so, the Blues sold their insurance only to people likely to be healthy (such as workers at major businesses) and covered members’ expenses only until preset yearly or lifetime limits were reached. They also relied on community rating. Under community rating, each individual pays a “group rate” insurance premium (yearly fee) based on the average risk level of his or her community as a whole. Even if one individual in a community racked up high bills, those bills would be covered by the insurance premiums paid by the many healthy members of the same community.

The 1930s also saw the rise of a strikingly different type of health insurance program, health maintenance organizations (HMOs). Unlike the Blues, the early HMOs such as Kaiser Permanente and the Group Health Cooperative of Puget Sound were founded not to protect the incomes of doctors or hospitals but to provide affordable health care. These plans also used community rating. But unlike the Blues, which reduced their costs by seeking only healthy individuals to enroll as members, HMOs reduced costs by keeping members healthy through preventive care, monitoring doctors’ decisions to avoid unnecessary care, and re- quiring HMO members to use only salaried doctors who worked for HMOs rather than independent doctors paid fee-for-service.

The Government Steps In

Although the Blues, HMOs, and other insurance plans enabled most Americans to pay for health care, by the 1960s, many poor Americans, as well as many mid- dle-class retirees, were finding it difficult to do so. Reflecting in part the rise of the civil rights movement and the growing belief that government should use its power to improve Americans’ lives, Congress in 1965 authorized two new health insurance programs: Medicaid to insure the poorest Americans and Medicare to insure Americans who were permanently disabled or age 65 and older (Hoffman, 2012).

It is important to note that Medicaid is funded jointly by state and federal governments and is typically framed by politicians and citizens as a form of char- ity. Eligibility, coverage, and payments to providers vary considerably across the states, depending in part on how willing state residents are to offer such “charity.” In contrast, Medicare is funded and organized by the federal government. Because most recipients are age 65 and older, the program is typically framed as an “enti- tlement” earned through a lifetime of working and paying taxes.

Both Medicaid and Medicare were established as fee-for-service insurance. Almost from the start, however, Medicaid offered relatively low reimbursement to health care providers, leading many doctors to reject Medicaid patients. Medicare,

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however, broadened access to health care while allowing providers to set their own fees, at least initially. As a result, the incomes of doctors, hospitals, and others working in the health care field skyrocketed.

The Rise of Commercial Insurance

Recognition of the profits to be made in health care led commercial insurance companies to enter the field in large numbers. Whereas the early insurance pro- grams were mostly nonprofits, commercial insurance programs by definition are organized on a for-profit basis and so must focus on earning a profit for their investors. To do so, they use actuarial risk rating rather than community rating. Under actuarial risk rating, insurers maximize their profits by doing whatever they can to avoid signing up individuals who are likely to have expensive medical bills. For example, until recently commercial insurers charged higher premiums to those who had back strain, kidney stones, or ulcers, and they typically denied coverage to those who had diabetes or ulcerative colitis or who worked as airline pilots or in construction. (The ACA changed this at least partly, as we will see later in this chapter.) Similarly, commercial insurers charged especially low rates to low-risk individuals. As a result, these insurers lured many low-risk individuals away from nonprofit insurers, leaving the nonprofits with a sicker clientele overall. To avoid having to raise their rates for all members to cover the bills of their sicker members, many nonprofit insurers have switched to actuarial risk rating or even become for-profit corporations.

The Rise (and Partial Fall) of Managed Care

By the 1980s, the amounts spent by government and insurers on health care had soared. This led to the explosive growth in managed care (Hoffman, 2012). The term managed care refers to any system that controls costs through closely moni- toring and controlling the decisions of health care providers; HMOs are one form of managed care organization (MCO). Most commonly, MCOs control costs in three ways. First, MCOs may negotiate prices with doctors and require consumers to use only doctors who accept their price schedule. Second, MCOs may offer bonuses to doctors who keep costs down and may require doctors to obtain ap- proval before hospitalizing a patient, performing surgery, ordering an expensive diagnostic test, or referring to a specialist outside the MCO’s “network.” This sys- tem is known as utilization review. Finally, MCOs may rely on expert advice to create lists (known as formularies) of the most cost-effective drugs for treating specific conditions. Doctors who work for an MCO must get permission before prescribing any drugs not on the MCO’s formulary. Most insured Americans now belong to some form of managed care plan.

Despite evidence suggesting that managed care makes little difference in access to care, quality of care, or patient satisfaction, it generated substantial backlash (Hoffman, 2012; Mechanic, 2004; Miller and Luft, 1997). A string of legislative and legal moves—often framed as “patients’ bills of rights”—have pressed insurers to drop some of the less popular aspects of managed care. For example, legislators

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opposed the early release of women from hospitals soon after giving birth (labeled “drive-by deliveries” by the media), even though early release typically is safer because it reduces women’s chances of contracting infections in the hospital. Similarly, legislators have fought to get patients access to experimental treatments, although patients are more likely to be harmed than helped by these treatments. In addition, even in the absence of legislative pressure, the need to keep both consumers and doctors happy has led insurers to scale back the use of formularies and utilization review and to increase consumers’ access to doctors outside of the MCO’s network (Bodenheimer, 1999; Hoffman, 2012).

Why has this backlash been so effective? Two important reasons can be found in American culture (Mechanic, 2004). First, a central theme in American culture is an emphasis on individual autonomy and independence. By its very nature, managed care reduces individual choices for both consumers and health care pro- viders, which left it vulnerable to political attack. Second, Americans typically believe that more health care is always a good thing. Yet overtreatment can be both dangerous and costly. For example, mortality rates are higher in geographic regions where Americans receive more extensive medical care, apparently because the extra medical treatment often is more dangerous than helpful (Fisher et al., 2003; Wennberg, 2010). Because of this cultural belief in treatment, however, Americans less commonly fear the pressure to overtreat built into a fee-for-service system than the pressure to undertreat built into managed care. These cultural factors made managed care an easy target.

The Attempt at “Health Care Security”

Pressures for reform began simmering again in the early 1990s as more and more Americans found themselves uninsured or otherwise unable to pay their health care bills. These problems led U.S. President William J. Clinton to propose his Health Care Security Act (HCSA) in 1993. The HCSA represented a liberal approach to health care reform. If adopted, the act would have broadened access to care without seriously threatening the basically entrepreneurial nature of the U.S. health care system or the power of the “big players” in health care. Under the HCSA, Americans still would have received health insurance from many different insurers, retaining the complexity and costs of the current system. Wealthier Americans would have retained the right to purchase health care options unavailable to others, so health care would have remained a two-class system. And the proposal included no oversight mechanisms to restrain the costs (and profits) of hospital, drug, or medical care.

Nevertheless, opposition to the plan was fierce, especially from the insurance industry, which poured millions into fighting the bill (Hoffman, 2012; Quadagno, 2005). Moreover, the sheer complexity of the bill made it easier for opponents to raise fears among the American public, which since the 1980s had increasingly distrusted “big government” (Rothman, 1997; Skocpol, 1996). In the end, Congress rejected the bill. However, Congress did approve passage of the State Children’s Health Insurance Program (SCHIP). That program has extended coverage (primarily through Medicaid) to many children under age 18 whose families earned too much

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to qualify for Medicaid but too little to pay for health care on their own. Still, millions of Americans were left without access to health care.

THE 2010 PATIENT PROTECTION AND AFFORDABLE CARE ACT

By 2008, with the election of U.S. President Barack Obama, the time for large- scale health care reform seemed to have arrived. The economy was spiraling into a recession, the costs of health care kept rising, and the ranks of the uninsured were growing rapidly, increasing public support for reform. Moreover, as the cost of insurance soared, many major employers who traditionally had paid most of their employees’ insurance costs concluded that they could no longer do so. As a result, the business community increasingly came to support health reform as well. Taken together, these factors led to the push for health care reform.

Passing the Affordable Care Act

Even with public and business support growing, passage of health care reform was not guaranteed. Stakeholder mobilization against the ACA remained strong among anti-tax and antigovernment conservatives, older Americans who feared it would reduce their Medicare benefits, and parts of the health care industry. As a result, in designing the ACA, the Obama administration emphasized working within the existing health care system (Jacobs and Skocpol, 2010; Miller, 2010; Oberlander, 2010). To earn the support of hospitals, doctors, and insurance companies, the ACA included many millions in government subsidies for health care, all of which would eventually be paid to the health care industry. To assuage voters who opposed new taxes, the ACA would instead be funded by requiring individuals and employers to bear the costs of expanding coverage. To earn the vote of those who feared “creeping socialism,” the government abandoned the idea of a government-run insurance system (such as an expanded version of Medicare). Finally, to earn the support of the major pharmaceutical manufacturers, the government promised new regulations that would reduce competition from foreign drug manufacturers and manufacturers of generic drugs (Jacobs and Skocpol, 2010; Miller, 2010; Ober- lander, 2010). Thus, the Obama administration chose, in essence, health insurance reform over health care reform (Leonhardt, 2010).

Understanding the Affordable Care Act

The ACA reflects the neoliberal premises underlying the U.S. health care sys- tem. Neoliberalism is an economic and social philosophy that encourages free trade and private enterprise; disapproves of government involvement in education, health care, or other social services; and promotes the idea that each individual has both the freedom and the responsibility to make wise consumer choices in health care, as in all areas of life (Fisher, 2007; Fisher and Ronald, 2008). Although the

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government continues to play a role in health care under the ACA (especially in services for the poor), the law requires many individuals to obtain for-profit in- surance coverage to purchase goods and services from for-profit pharmaceutical companies, hospitals, and doctors’ offices. Moreover, the ACA holds individuals responsible for any bills not covered by their insurance.

The central goal of the ACA was to increase access to health care within the existing health care framework and without increasing costs. Creating universal access to health care was never stated as a goal (Hoffman, 2012). As a result, rather than requiring the government to provide health insurance or care to all citizens (as many nations do), the ACA established an individual mandate—that is, it required each U.S. citizen and legal resident to obtain health insurance. In theory, the individual mandate would force healthy as well as unhealthy Americans to join, thus reducing the cost of insurance for each individual by spreading the bills across a large and mostly healthy population. To make that insurance affordable, the ACA established both state-level “health exchanges” and a federal exchange through which individuals and small businesses could purchase coverage (helped by subsidies and tax credits for middle- and working-class individuals).

In addition, the ACA established an employer mandate: a legal requirement that employers with more than 50 employees offer affordable (for-profit) health insurance that meets minimum standards for their employees. (Small businesses receive tax credits to encourage them to do the same.)

The ACA also called for Medicaid to be expanded to include all poor and near-poor Americans under age 65. This change was to play a major role in reduc- ing the underinsured and uninsured population. However, in a landmark decision, the Supreme Court decided that the federal government could not require states to expand their Medicaid programs. As of 2018, one-third of states have chosen not to expand, even though the federal government would have paid almost all the costs and several million people would have gained insurance coverage (Antonisse et al., 2018).

Finally, the ACA established various new restrictions on insurance compa- nies. Among other things, companies are now prohibited from capping annual or lifetime benefits, refusing to cover those with preexisting health problems, or charging higher premiums to such individuals. In addition, the law sets a yearly cap on how much insurers can expect consumers to pay via deductibles (the amount individuals must pay out of pocket before their insurance kicks in) and copayments (unreimbursable fees paid out of pocket each time one sees a doc- tor). Insurers also must cover at least 60% of average medical costs and must allow young people to remain on their parents’ insurance policies until they turn 26.

The ACA Under Attack

From the moment the ACA was passed, it has been under attack. Numerous bills to alter or end it have been proposed in Congress, and numerous court challenges against it have been filed at the state and federal levels.

Those attacks grew stronger and more effective with the election of President Donald Trump in 2016 (Sanger-Katz, 2018). Among other things, the Trump

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administration has made it more difficult for Americans to get Medicaid coverage. It also virtually eliminated the advertising budget for ACA insurance plans, leading fewer people to enroll in a plan by the yearly deadline. In addition, it reduced subsidies to insurers. In response, insurers have raised their premiums, leading some individuals to drop their insurance. Similarly, the government now allows insurers to offer cheaper plans that provide minimal benefits, increasing the number of people who have insurance but still can’t pay their health care bills. Most important of all, the government dropped the requirement that individuals purchase insurance or pay a fine, encouraging healthier persons to go without insurance altogether (Sanger-Katz, 2018).

No matter who wins in future elections, the ACA’s future is uncertain.

The Impact of the ACA

Passage of the ACA dramatically reduced the number of uninsured persons in the United States from 49 million in 2010 to 29 million in 2017 (Cohen, Zammitti, and Martine, 2018). Moreover, on average, individuals who gained insurance coverage report greater financial security and better health than similar individuals who lack insurance. In addition, states that expanded Medicaid coverage reported more economic growth and less unemployment than other states (Antonisse et al., 2018).

THE CONTINUING CRISIS IN HEALTH CARE COSTS

Unfortunately, even with adoption of the ACA, the cost of health care in the United States is perilously high—and rising (Kamal and Cox, 2017). Moreover, compared to other more developed nations, the United States spends considerably more on health care (OECD, 2018). Yet despite these expenditures, researchers consistently rank the U.S. health care system below that of most other comparable nations (Commonwealth Fund, 2017a; Muennig and Glied, 2010; Schoen et al., 2010).

The Myths of Health Care Costs

What accounts for the rising and unusually high costs of health care in the United States? If you ask the typical American—or member of Congress—he or she is likely to respond with one of four popular “myths” about U.S. health care (Starr, 1994).

The first myth is that Americans receive more and better care than do citizens of other more developed nations. On average, however, the reverse is true. For example, despite our high health costs, Americans see doctors fewer times each year and can’t afford needed care more times per year than do citizens of most devel- oped nations, as Figures 8.1 and 8.2 show. And as Figure 8.3 shows, despite those higher health costs, life expectancy in the United States is lower than in numerous other developed nations.

The second myth attributes our high health care costs to our unique propen- sity for filing malpractice suits. Malpractice suits can raise prices because doctors

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FIGURE 8.1 Health Expenses and Number of Doctor Visits per Year in 30 Nations*

0 64 10 12 14 16 18 202 8 $0

$1,000

$2,000

$3,000

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United States

Luxembourg

Canada

Hungary

Germany

Mexico

United Kingdom Japan

Number of Visits

H ea

lth E

xp en

se s

($ )

*Dollar amounts adjusted for purchasing power parity. This strategy controls for differences over time and across countries in the worth of a nation’s currency by factoring in the number of units of a nation’s currency required to buy the same amount of goods and services that $1 would buy in the United States.

SOURCE: OECD (2018).

have to pay malpractice insurance premiums and they may believe they have to engage in defensive medicine—performing tests and procedures primarily to protect themselves against lawsuits. Researchers estimate, however, that defensive medicine accounts for only a small percentage of total U.S. health care costs, and so changing the malpractice system would not significantly reduce the use of un- necessary tests and procedures (Rothberg, 2014).

The third myth attributes our rising health care costs to our aging population. Yet the population of the United States is no older than that of any of the other wealthy nations, and economists have found no relationship between the age of a nation’s population and its health care costs (Bodenheimer, 2005a).

The fourth myth is that health care costs are so high in the United States be- cause of our advanced technologies. Although these technologies certainly play a role in health care costs, technologies (other than pharmaceutical drugs) account for only a small fraction of all health care costs. Moreover, the same technologies exist in the other wealthy nations without producing equally high health care costs. Thus, the mere existence of technology can’t explain these costs.

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Understanding Health Care Costs

If patient demand, malpractice costs, the aging population, and advanced technology don’t explain the rising costs of health care, then what does? Research points to three underlying factors: a fragmented system that multiplies administrative costs, the great power that health care providers (doctors, hospitals, pharmaceutical companies, etc.) hold relative to health care consumers (whether individuals, the government, or insurers), and the for-profit basis of the U.S. health care system (Bodenheim, 2005a, 2005b, 2005c; Commonwealth Fund, 2017a; Davis et al., 2014; Reinhardt, Hussey, and Anderson, 2004).

Because Canadian society is probably the most similar to U.S. society, com- paring these two countries helps illustrate why costs are so high in the United States. In the next chapter, we examine the Canadian health care system in detail. At this point, we need only note a few major points. Most important, Canadians receive their health insurance from a single payer: the government. For this reason,

FIGURE 8.2 Health Expenses and Number of Times Couldn’t Afford Needed Care*

0 1510 25 30 355 20 $0

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United Kingdom

Italy

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Poland

Number of Times Couldn't Afford Care

H ea

lth E

xp en

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($ )

SOURCE: OECD (2018).

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the Canadian system is referred to as a single-payer system. Similarly, hospitals receive an annual sum from the government to cover their costs. Those costs are restrained because, unlike in the United States, Canadian hospitals don’t need an expensive administrative system to track patient expenses and submit bills to mul- tiple insurers. As a result, hospital costs per capita in Canada are almost 50% lower than in the United States (Himmelstein et al., 2014).

In Canada, costs are also restrained by government oversight on major capital development: If a Canadian hospital wants to add new beds or purchase new advanced technologies, it must first convince the government that such services are needed (Bodenheimer, 2005b). As a result, hospital costs are considerably lower in Canada than in the United States, even though admission rates are about equal and average stays are longer.

A unified rather than fragmented system also helps restrain Canada’s medical and drug costs. Like hospitals, doctors must submit their bills only to the national insurance system rather than filing myriad different forms with different insurers. Meanwhile, no one need spend money on advertising or selling insurance, trying

FIGURE 8.3 Health Expenses and Life Expectancy in 30 Nations*

United States

Canada

Germany

Japan

Mexico

United Kingdom

70 80 8575 $0

$1,000

$2,000

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$4,000

$5,000

$6,000

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Life Expectancy

H ea

lth E

xp en

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($ )

SOURCE: OECD (2018).

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to collect unpaid bills, or covering the costs of unpaid bills. Drug costs are limited because provincial health administrators develop formularies of the most cost- effective drugs and negotiate with pharmaceutical companies to buy those drugs at discount prices. Similarly, Canada’s national health care system has the economic “muscle” to control the prices it pays doctors, technology companies, and other health care providers.

In addition to the fragmented nature of the U.S. health care system, the fact that health care providers hold more power than health care consumers in the United States has also kept costs high. This results from the fact that profit making—by doctors, hospitals, insurers, pharmaceutical companies, and others— lies at the heart of the U.S. health care system.

As the next section discusses further, in the United States, pharmaceutical companies largely control which drugs come to market, how they are advertised, and at what prices, with few constraints imposed by any national consumer or government forces. Similarly, U.S. hospitals are free of the governmental oversight that constrains costs in Canada and are forced to compete for patients to pay their bills (let alone earn a profit). As a result, hospitals must create demand by adding beds, specialized units (such as heart-transplant units), and expensive technologies (such as kidney-dialysis machines), and then encouraging doctors and patients to use those services.

Similarly, because no national health care system controls the number or dis- tribution of doctors in the United States, most of the country (other than poor and rural areas) has far too many doctors, especially specialists. To protect their incomes in the face of this competition, doctors may increase either the number of services they recommend to patients or their fees for those services (Aizenman, 2010; Bodenheimer, 2005c). This largely explains why U.S. doctors are excep- tionally likely to adopt new, expensive, and often unproven technologies such as full-body scans and bone-marrow transplants (Bodenheimer, 2005b). In addition, U.S. doctors increasingly are trying to raise their incomes by purchasing surgical centers, CT scan machines, and other expensive technologies—actions that would likely not be permitted in a single-payer health care system. It is no surprise that doctors who do so are considerably more likely to recommend those services to their patients (Ruggieri, 2014). For all these reasons, Americans living in areas with many doctors per capita receive more medical tests, surgeries, and other pro- cedures; pay more for those services; and have worse health outcomes than those living in areas with fewer doctors (Bodenheimer, 2005b; Wennberg, 2010).

Finally, the for-profit basis of the U.S. health care system, combined with its fragmented nature and the power it gives to health care providers, has made it difficult for reform efforts to succeed. For example, since the 1980s the U.S. has tried to reduce Medicaid and Medicare costs through a system of diagnosis- related groups (DRGs). Under this system, the government calculates the av- erage cost of inpatient treatment for each possible DRG and then reimburses hospitals for treatment based on those averages rather than on the actual costs per patient. If the hospital spends less than this amount, it earns money; if it spends more, it loses money. Theoretically, then, the DRG system should have limited the costs of providing care under Medicaid and Medicare. Instead, hospitals developed

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sophisticated computer software to identify the most remunerative but still plau- sible diagnosis for a given patient—a process known as “DRG creep.” In addition, hospitals increasingly shifted services to outpatient units, where the DRG system does not apply. As a result, the DRG system only marginally reduced government costs for hospital care. Similarly, when the government restricted the fees it would pay health care providers for treating Medicaid patients, many providers either stopped accepting such patients or increased the fees they charged patients who had other forms of insurance.

Health Care Costs and the ACA

Given the reasons why U.S. health care costs are so high, it seems unlikely that the ACA can cut costs significantly. First, the ACA continues the nation’s reliance on a vast web of insurers, thus guaranteeing huge administrative costs and inefficiencies. Second, health care providers (especially insurers) continue to have considerable control over the system. Most important, to appease health industry opponents, most proposals to incorporate well-established cost control mechanisms into the ACA were dropped from the bill before it was passed.

At the individual level, and as the story that opened this chapter illustrated, even insured Americans may continue to risk bankruptcy because of copayments, deductibles, and other services not covered by their insurance. In 2017, those who purchased the least expensive insurance plans available through state health exchanges were responsible for insurance deductibles of up to $7,000 for individuals and $14,000 for families (Cigna.com, 2017). In addition, individuals remain responsible for many costs not covered by their insurance such as drugs not approved by their plans or emergency care at hospitals not included in their plan’s network.

Finally, the ACA preserves the for-profit nature of our health care system. Within such a system, doctors, hospitals, and other health care providers will be pressured to find ways to generate profits through their decisions regarding admissions, diagnoses, tests, treatment, and so on. For example, two-thirds of for-profit hospices for the dying will not accept patients whose pain needs to be managed through chemotherapy or other expensive forms of care (Rao and Hellander, 2014). And as we’ve seen, even nonprofit organizations will be pressured to do the same in order to continue their work. Similarly, we can expect that for- profit insurers will continue to seek ways to enroll members who are relatively healthy and avoid potential members who might generate high medical bills. This will leave nonprofits and state health exchanges with a disproportionate number of members who have high medical bills, raising the cost of such plans in the end.

For these reasons and others, the ACA is likely to have only a modest effect if any on health care costs (Weiner, Marks, and Pauly, 2017).

Health Care Costs and “Big Pharma”

Because the pharmaceutical industry, or “Big Pharma” as it is often known, has so quickly emerged as a major source of health care costs it is worth exploring in more depth. This section looks at how the pharmaceutical industry affects doctors’

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and patients’ ideas about illnesses and treatments and, as a result, how it affects health care costs.

Big Pharma Comes of Age The pharmaceutical industry is an enormous— and enormously profitable—enterprise. Indeed, it has been the most profitable industry in the United States since the early 1980s (Angell, 2004). Although phar- maceutical companies routinely argue that their high profits merely reflect the high cost of researching and developing new drugs, such work accounts for only 14% of their budgets. In contrast, marketing accounts for around 50% (Angell, 2004). Largely because of this marketing, American citizens now spend a total of about $272 billion per year on prescription drugs, not including drugs purchased by doctors, nursing homes, hospitals, and other institutions (Centers for Medicare and Medicaid Services, 2014). Americans are buying more drugs, buying more expensive drugs, and seeing the prices of popular drugs rise more often than ever before. (The price of the popular antihistamine Claritin, for example, rose 13 times in five years.)

The pharmaceutical industry was not always this profitable. Profits only began soaring in the early 1980s after a series of legal changes reflecting both the increasingly “business-friendly” atmosphere in the federal government and the increased influence of the pharmaceutical industry lobby—now the biggest spending lobby in Washington. First, new laws allowed researchers funded by federal agencies (including university professors and researchers working for small biotech companies) to patent their discoveries and then license those patents to pharmaceutical companies. This change dramatically reduced pharmaceutical companies’ research costs—while giving these researchers a vested interest in emphasizing the benefits of new drugs.

Second, new laws doubled the life of drug patents. As long as a drug is under patent, only the company that owns the patent can sell the drug, allowing it to set its price as high as the market will bear. In addition, companies can now extend their patents by developing “me-too” drugs that differ only slightly from existing drugs. For example, when the patent expired for Prilosec, a widely used treatment for common stomach troubles, its manufacturer released Nexium, an essentially identical new drug. Nexium now sells for $6 per pill and Prilosec for $1, whereas the chemically identical generic version, omeprazole, sells for 45 cents. Yet sales are highest for Nexium (Brawley, 2011).

Third, the pharmaceutical industry won the right to market drugs directly to consumers. Direct-to-consumer advertising has proven highly effective. According to a nationally representative survey conducted in 2008 for the nonprofit Kaiser Family Foundation, almost one-third of American adults have asked their doctors about drugs they’ve seen advertised, and 82% of those who asked for a prescrip- tion received one (Appleby, 2008).

Developing New Drugs Much of the recent rise in health care costs in the United States comes from the shift to new drugs. Whenever a new drug is de- veloped, the crucial question for health care providers and patients is whether its benefits outweigh its dangers. For this reason, any new drug should be extensively

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tested to determine whether it works better than already available drugs (which almost certainly are cheaper), whether it works differently in different populations, what dosages are appropriate, and what side effects are likely. But because pharma- ceutical companies earn their profits by selling drugs, they have a vested interest in overstating benefits and understating dangers. And increasingly these companies are both willing and able to manipulate the data available to outside researchers, doctors, federal regulators, and consumers (Abramson, 2004; Angell, 2004). For example, because scientific testing is typically designed to be accurate 95% of the time, manufacturers know that if they test a drug enough times, they will even- tually hit the other 5% and obtain data that inaccurately suggest a drug works in some population. “Contemporary Issues: Race-Specific Medicine” describes one outcome of this process.

In the past, university-based drug researchers provided at least a partial check on the drug research process by bringing a more objective eye to their research. Since 1980, however, pharmaceutical industry funding for research by university- based scientists has skyrocketed (Lemmens, 2004). That funding comes in many forms—from research grants to stock options to all-expenses-paid conferences in Hawaii. Moreover, as other federal funding for universities declined over the past quarter century, university administrators came to expect their faculty to seek pharmaceutical funding. Importantly, when the pharmaceutical industry funds university-based research, it often retains the rights to the research results and

CONTEMPORARY ISSUES

Race-Specific Medicine

Is medicine a black or white matter? Increasingly, pharmaceutical manufacturers are acting as if it is. At least 30 drugs now on the market are claimed by manufacturers to be safer or more effective for African Americans than for whites (Epstein, 2007). Most commonly, these are drugs that proved ineffective in rigorous testing but that (perhaps accidentally) appeared to work in small studies of African Americans—some of which didn’t even compare African Americans with whites. Yet as Chapter 3 discussed, there are no meaningful genetic differences between “races,” so there are no biological explanations for these supposed differences in drug safety or efficacy. Indeed, one major review concluded that manufacturer’s claims for “race-specific” drugs are “universally controversial” (Tate and Goldstein, 2004).

In addition to increasing drug costs as patients are shifted from older, less expensive drugs to newer and perhaps ineffective drugs, the rise of race-specific medicine reinforces the idea that racial differences are real and important (Epstein, 2007). Moreover, when drug companies focus on seeking racial differences, they may unintentionally hide more important causes of illness: Poor African Americans living in polluted neighborhoods in Mississippi, for example, may be no more susceptible to disease than their white neighbors, but this may be overlooked if researchers divide their subjects only by race and not by pollution levels. Similarly, the concept of race-specific medicine may lead doctors to quickly assign diagnoses and treatments based on race rather than on a holistic assessment of their patients as individuals. In fact, more than 80% of doctors responding in a national survey agreed that race should be used as a basis for diagnosis and treatment (Williams et al., 2010).

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thus can keep university researchers from publishing any data suggesting that a particular drug is ineffective or dangerous (Angell, 2004; Lemmens, 2004).

At the same time that the pharmaceutical industry has increased its funding to university-based researchers, it has even more dramatically increased funding to commercial research organizations (Lemmens, 2004). These organizations are paid not only to conduct research but also to promote it. To keep on the good side of the companies that fund them, these research organizations must make drugs look as effective and safe as possible by, for example, selecting research subjects who are least likely to experience side effects, studying drugs’ effects only briefly before side effects can appear, underestimating the severity of any side effects that do appear, and choosing not to publish any studies suggesting that a drug harms or doesn’t help.

Doctors, medical researchers, sociologists, and others have raised concerns about the impact of bias on research publications (Bodenheimer, 2000). Research- ers have found that medical journal articles written by individuals who received pharmaceutical industry funding are four to five times more likely to recommend the tested drug than are articles written by those without such funding (Abramson, 2004:97). Similarly, researchers have found that research studies suggesting a drug is effective are several times more likely to be submitted and accepted for publica- tion than are those that suggest it is ineffective (Hadler, 2008; Turner et al., 2008). Concern about such biases led the New England Journal of Medicine (one of the top two medical journals in the United States) to forbid authors from publishing articles on drugs in which they had financial interests. The policy, however, was dropped quickly because it proved virtually impossible to find authors who did not have financial conflicts (Lemmens, 2004).

Even more astonishing than pharmaceutical industry funding of university- based researchers is the growing practice of paying such researchers to sign their names to articles written by industry employees (Elliott, 2004). For example, between 1988 and 2000, 96 articles were published in medical journals on the popular antidepressant Zoloft. Slightly more than half of these were written by pharmaceutical industry employees but published under the names of universi- ty-based researchers. Moreover, these ghostwritten articles were more likely than other articles to be published in prestigious medical journals (Elliott, 2004).

Regulating Drugs In the United States, ensuring the safety of pharmaceutical drugs falls to the Food and Drug Administration (FDA). But during the same time period that the profits and power of the pharmaceutical industry grew, the FDA’s power and funding declined as part of a broader public and political movement away from “big government.” These two changes are not unrelated: The pharma- ceutical industry now routinely provides funding of various sorts to staff members at government advisory agencies, doctors who serve on FDA advisory panels, and legislators who support reducing the FDA’s powers (Lemmens, 2004).

Under current regulations, the FDA must make its decisions based primar- ily on data reported to it by the pharmaceutical industry. Yet the industry is re- quired to report only a small fraction of the research it conducts. For example, the company that produced the antidepressant Paxil had considerable data indicating that among teenagers Paxil did not reduce depression but could lead to suicide. To

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avoid making this information public, the company submitted to the FDA only its data from studies on adults (Lemmens, 2004). Similarly, drug companies need only demonstrate that new drugs work better than placebos, not that they work better than existing (cheaper) drugs. For example, because of intensive marketing campaigns, new antipsychotic drugs such as Zyprexa have largely replaced older, cheaper drugs, even though the new drugs work little better than placebos and carry life-threatening risks (Wilson, 2010b).

Marketing Drugs Once the pharmaceutical industry develops a drug and gets FDA approval, the next step is to market the drug. One of the most important limitations to the FDA’s power is that, once it approves a drug for a single use in a single population, doctors legally can prescribe it for any purpose to any popu- lation. For example, doctors increasingly are prescribing Botox injections to treat migraines even though the FDA has not approved its use for that purpose.

Drug marketing has two major audiences: doctors and the public. Marketing to doctors begins during medical school as students quickly learn that pharmaceu- tical companies provide a ready source not only of drug samples and information but also of pens, notepads, lunches, and all-expense-paid “educational” confer- ences at major resorts. After graduation, the pharmaceutical industry continues to serve as doctors’ main source of information about drugs. The Physicians’ Desk Reference (or PDR), the main reference doctors turn to for drug information, is solely composed of drug descriptions written by drug manufacturers. In addi- tion, the pharmaceutical industry spends $6000 to $11,000 (depending on med- ical specialty) per doctor per year to send salespeople to doctors’ offices on top of the money it spends advertising drugs to doctors in other ways. Most doctors meet with pharmaceutical salespeople at least four times per month and believe their behavior is unaffected by these salespeople. Yet doctors who meet with drug salespeople prescribe promoted drugs more often than do other doctors—even when the promoted drugs are more costly and less effective than the alternatives (Angell, 2004; D. Shapiro, 2004). In addition, the pharmaceutical companies now surreptitiously provide much of the “continuing education courses” doctors must take each year by paying for-profit firms to teach the courses and to arrange with universities to accredit the courses (Angell, 2004).

In recent years, and as noted previously, marketing directly to consumers has become as important as marketing to doctors. To the companies, such advertising is simply an extension of normal business practices and no different from any other form of advertising. Moreover, they argue, advertising to consumers is a public service because it can encourage consumers to seek medical care for problems they otherwise might have ignored. Finally, companies have argued that these advertisements pose no health risks because consumers still must get prescriptions before they can purchase drugs, thus leaving the final decisions in doctors’ hands. Those who oppose such advertisements, on the other hand, argue that the advertisements are frequently misleading, encourage consumers to pressure their doctors into prescribing the drugs, and encourage both doctors and patients to treat normal human conditions (such as baldness) with pharmaceutical drugs (Angell, 2004; Hadler, 2008).

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Marketing Diseases As this suggests, the pharmaceutical industry sells not only drugs but also diseases to doctors and the public alike. In some cases, drug compa- nies have encouraged doctors and the public to define disease risks (such as high blood pressure) as diseases (such as hypertensive disease). In other cases (as Chapter 5 described), drug companies have defined symptoms into new diseases.

One example of this is the disease known as pseudobulbar affect (PBA). PBA refers to uncontrollable laughing or crying unrelated to individuals’ emotional state and can be caused by various disabling neurological conditions (such as head trauma, stroke, and Lou Gehrig’s disease). The concept of PBA was developed by Avanir Pharmaceuticals, which markets the drug Nuedexta as a treatment for it (Appleby, 2017). Although Nuedexta seems to help some patients, its side effects are serious enough that at least one-quarter of users—all of whom already have serious health problems and must take numerous other medications—soon stop taking it. Moreover, equally effective drugs are available at a fraction of the cost.

To convince doctors that uncontrollable laughing and crying is a disease in itself, Avanir has advertised in medical journals and sponsored continuing education courses, conferences, and a PBA newsletter. Avanir also has marketed the concept of PBA directly to consumers through television advertisements, a website it created focused on PBA, and educational grants to advocacy groups for those living with stroke, multiple sclerosis, and other diseases (Pollack, 2005). These strategies led sales of Neudexta to increase by more than five times between 2012 and 2016 (Appleby, 2017).

THE CONTINUING CRISIS IN HEALTH CARE ACCESS

The passage in 2010 of the ACA reflected the growing consensus that health care in the United States is in crisis. But although the ACA has made a difference, shockingly high numbers of Americans nonetheless remain uninsured, underinsured, or precariously insured.

Uninsured Americans

As noted previously, the ACA significantly reduced the number of Americans who were uninsured but still left 29 million Americans uninsured.

Young, childless adults—the population least likely to believe they might fall ill and least likely to be covered by government health care programs—are especially likely to be uninsured, as are African Americans, Hispanics, and poorer persons (Kaiser Family Foundation, 2017). In addition, individuals are most likely to lack insurance if they live in states that opted out of the Medicaid expansion (most of which are in the South or Southwest) (Kaiser Family Foundation, 2017).

Surprisingly, most uninsured Americans live in families with one or more full-time workers even though insurance is typically tied to employment (Kaiser Family Foundation, 2017). This reflects sharp reductions over the last two decades in the benefits employers offer their workers and sharp increases in the number

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of workers hired without benefits on a part-time or temporary basis. Ironically, because the ACA requires large employers to subsidize health insurance for employees who work 40 or more hours, many employers have cut workers’ hours below that level (Rao and Hellander, 2014).

Finally, disabled and ill Americans remain disproportionately likely to be uninsured. In the past, most states allowed insurers to reject applicants for individual health insurance who showed any indications of health problems. The ACA now prohibits this practice, but experience suggests that insurers will continue to find ways to avoid enrolling individuals who seem likely to generate high medical bills.

Underinsured Americans

In addition to those who are uninsured, almost 30% of adults under age 65 who have insurance are underinsured (Commonwealth Fund, 2017b). In other words, they have insurance but still can’t afford to pay all their medical bills. Underin- surance is most common among poorer people and those with chronic health problems (Commonwealth Fund, 2017b).

Underinsurance occurs when individuals can’t afford to pay required insurance premiums, deductibles, or copayments. It can also occur when insurers either cap reimbursements per treatment or don’t cover certain treatments such as drugs or nursing home care. As a result, people often face bankruptcy and often skip needed medical care.

The Consequences of Underinsurance and Lack of Insurance

Uninsured and underinsured persons are considerably less likely than others to report that they are in good health (Sommers, Gawande, and Baicker, 2017). It is not surprising that they are also less likely than insured Americans to receive needed health care, more likely to suffer from a variety of health complaints, and more likely to die from potentially treatable health problems (Kaiser Commission on Medicaid and the Uninsured, 2010; Sommers, Gawande, and Baicker, 2017).

This does not mean, however, that uninsured and underinsured persons have no access to health care. Federal, state, and some local governments provide clinics and public hospitals that offer low-cost or free care to such individuals. In addition, governments sometimes provide low-cost or free vaccination, cancer screening, and well-child programs. These facilities and programs, however, are not always geographically accessible to those who need them. In addition, these facilities are continually underfunded, so individuals may have to wait hours for emergency care and weeks or months for nonemergency care.

Uninsured and underinsured persons also sometimes can obtain health care through the private sector. First, some individuals can find private doctors who will reduce or waive their fees, and some live in communities where nonprofit hospitals offer inexpensive outpatient clinics. Second, uninsured persons can obtain care for both acute and chronic, emergency and nonemergency health problems from hospital emergency departments. Although emergency departments legally can refuse care to anyone who is medically stable, many provide at least basic

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treatment to all who present themselves. Afterward, however, individuals can face stratospheric bills. Finally, uninsured persons sometimes volunteer for experimental trials of new drugs to obtain at least sporadic treatment (Fisher, 2009). Yet in such experiments, some patients receive placebos, some receive drugs that prove ineffective, and some receive drugs that prove harmful. Moreover, even if the drugs work well, patients receive only temporary benefit because the drugs become unavailable after the experiments end.

THE PROSPECTS FOR STATE-LEVEL REFORM

Although the ACA mandates many elements of health care for the states, it also gives leeway for states to begin or continue their own reform efforts, some of which in the end may become models for national reform. So far, Vermont is the only state to have declared health care a right and to have seriously considered adopting a single-payer system to operate under the ACA. Those plans are currently on hold, however. Vermont, though, is an unusual state, which leans heavily Democratic, and so few expect other states to follow its lead.

Hawaii offers another model for reform. In 1974, Hawaii’s legislators passed the Prepaid Health Care Act. Unlike the ACA, which is based on an individual mandate, Hawaii’s program is based on an employer mandate—that is, on the requirement that all employers offer health insurance to their workers and pay a specified percentage of the costs. Hawaii requires employers to pay at least 50% of the cost for any employees who work at least 20 hours per week for four consecu- tive weeks (Harris, 2009). In addition, most employers voluntarily insure employ- ees’ families and pay more than their required 50% of costs.

The willingness of Hawaiian employers to care for their employees may reflect unusual aspects of Hawaii’s history, geography, and culture. The state’s geographic isolation makes it difficult or impossible for employers to move elsewhere, and decades of paternalistic control by pineapple plantation owners had established the idea that employers had some responsibilities to their employees—a concept reinforced by Hawaii’s relatively strong unions. In addition, Hawaii’s employers may share the common Hawaiian belief that all residents of these isolated islands should be treated like members of a family (Harris, 2009).

As in other states, elderly persons and extremely poor persons receive their health insurance from Medicaid or Medicare. Unemployed persons and part-time workers who earn too much to receive Medicaid but too little to purchase insurance on their own instead can get insurance through the federal exchange previously discussed, helped by hefty subsidies provided by the Hawaiian government. As a result, 97% of Hawaii residents are insured (Barnett and Berchick, 2017).

Because such a high proportion of the state’s population is insured, insurers can use community ratings rather than risk ratings—keeping rates affordable for all purchasers—and still remain financially viable. In fact, both insurance premiums and costs per Medicare enrollee are among the lowest in the nation, although they have risen significantly over the last few years.

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In addition to ensuring a high level of coverage, the new system enabled Hawaii to keep health care costs relatively low. First, because almost everyone has health insurance, residents can seek care early for illnesses and accidents. As a result, the system is protected from the tremendous medical costs that can accrue when illness or accidents are left untreated. Second, Hawaii benefited from the unintended development of monopolistic, nonprofit insurance plans. About 70% of Hawaiians receive their insurance from one of two nonprofit insurers: the Hawaii Medical Service Association or Kaiser Permanente. Because these two insurers control such a large share of the market, they can exert considerable control over medical costs. Doctors who refuse to accept their reimbursement schedules or salaries can attempt to seek patients elsewhere but will find few patients who don’t belong to these plans. Finally, Hawaii restrained costs through reducing hospital use and costs. Unlike most U.S. insurers, Hawaii’s two major insurers pay only for hospital stays in wards, not semiprivate rooms. Meanwhile, Hawaii implemented a strict system for prospectively reviewing any hospital capital expenses. Hospitals can’t purchase major equipment or construct new facilities unless they can demonstrate need for those services. Therefore, consumers need not pay the costs of maintaining unused hospital beds or duplicative technologies. In 2017, Bloomberg News declared Hawaii’s health care system the best in the nation based on life expectancy, cost per capita, and cost as a percentage of the state’s gross domestic product (Del Giudice and Lu, 2017).

Conversely, the continued existence of Medicare and Medicaid has hampered Hawaii’s ability to restrain health care costs. Because these plans don’t reimburse hospitals at rates high enough to cover the actual costs of providing care, hospitals have shifted costs to patients with private health insurance. At the same time, Medicaid’s especially low reimbursement schedules have hampered access to health care because many doctors won’t accept Medical patients. These problems have been exacerbated by the (nationwide) shift toward replacing full-time workers with part-time workers, which means that more Hawaiians must turn to the state rather than employers for their insurance. As a result, costs have increased, and the state has had to reduce the benefits available through its insurance program. In addition, the costs of meeting various ACA requirements also have placed pressures on Hawaii’s health insurance program.

In sum, the Hawaii experiment demonstrates both the advantages of moving toward a single-payer, nonprofit system with strong centralized control and the problems when multiple payers—in this case, public and private insurers—continue to function in the same economic sphere. It also demonstrates the benefits available from a reasonably unified managed care system and the difficulties of sustaining a strong system in the face of external economic pressures.

IMPLICATIONS

As we have seen, Americans obtain their health care through a wide range of funding mechanisms—from publicly subsidized health care programs to private fee-for-service insurance to nonprofit HMOs. Even with passage of the ACA,

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some Americans continue to have nearly unlimited access to health care— including unneeded and potentially dangerous care—and others lack access to even the most basic health care. Although millions have gained insurance, millions still face bankruptcy because of the limitations built into that insurance. Thus, the United States continues to face economic and health problems caused by both overuse and underuse of health care services. Moreover, the ACA hasn’t changed the underlying structure of the system and so cannot reduce the nation’s health care costs or other problems over the long run.

The failure to pass—or even seriously consider—any proposals for more dra- matically changing the health care system reflects the political and cultural realities of the contemporary United States. American culture has always contained both liberal and conservative tendencies. The freedoms established in the Bill of Rights, the commitment to public education, and the establishment of programs such as Social Security reflect the widespread (liberal) belief that the government has a responsibility to protect and value all its citizens. At the same time, U.S. culture has long linked belief in individual freedom with belief in individual responsibility: If the idea of an “American dream” suggests that anyone can succeed, it also sug- gests (as conservatives often emphasize) that those who do not succeed have only themselves to blame. This belief underlies the ongoing attacks against the ACA. It remains to be seen whether changing U.S. demographics, politics, or economic re- alities will shift the balance between these two tendencies and push either toward or away from further health care reform.

SUMMARY

1. The United States does not have a health care system. Rather, it has an agglomeration of public and private providers functioning autonomously in often-competing ways.

2. Stakeholder mobilization—organized political opposition by groups with vested interest in the outcome—has stood in the way of any true reform of the system.

3. The Blue Cross and Blue Shield insurance plans were established to protect the incomes of hospitals and doctors. Both plans were nonprofit, offered fee- for-service insurance (in which consumers are reimbursed for their medical and hospital bills), and were initially based on community rating (in which all members pay the same insurance premium based on the average risk level of their community as a whole).

4. HMOs also used community rating but were established to provide health care to all. HMOs reduced costs by encouraging preventive care, monitoring doctors’ behavior to make sure it was cost-effective, paying doctors on salary, and requiring HMO members to use only HMO doctors.

5. Medicare and Medicaid are government insurance programs that provide health care coverage to poor, disabled, and elderly persons. Because they initially were a form of fee-for-service insurance with the government

193H E A LT H C A R E I N T H E U N I T E D S TAT E S

paying all health care bills for members, these programs dramatically increased the profits available in health care.

6. Commercial insurers rely on actuarial risk rating in which insurance premiums are based on an individual’s health risks. Competition from commercial insurers has led Blue Cross, Blue Shield, HMOs, and other nonprofit insurers to begin operating more like each other and more like commercial insurers.

7. Managed care refers to any system that controls costs by monitoring and controlling health care providers’ actions. Most U.S. insurers now use managed care, but public backlash has substantially reduced its impact.

8. The ACA, passed in 2010, aims to reduce the number of uninsured Americans primarily through expanding Medicaid, requiring large employers to offer insurance and requiring other individuals to purchase health insurance (with the assistance of government subsidies and tax credits). The ACA includes only minimal efforts to control the costs of care and won’t change the underlying structure of the health care system.

9. The cost of health care in the United States is perilously high for three reasons. First, a fragmented system multiplies administrative costs. Second, health care providers have considerably more power than health care consumers (whether individuals, the government, or insurers). Third, the for- profit basis of the U.S. health care system makes it difficult to control costs.

10. Pharmaceutical companies are an important factor in rising health care costs because they largely control which drugs come to market, how they are advertised, and at what prices. Pharmaceutical companies market new diseases as well as new drugs.

11. Although the ACA has made a difference, shockingly high numbers of Americans nonetheless remain uninsured. Those who lack good insurance are significantly more likely than others to experience illness, disability, or death. Meanwhile, the ACA remains under attack.

REVIEW QUESTIONS

1. How and why does commercial insurance differ from insurance offered on a nonprofit basis?

2. What is managed care? How can it restrain health care costs, and how can it harm individuals’ health?

3. What are Medicaid and Medicare?

4. Why have health care costs in the United States risen?

5. Who are the uninsured?

6. Why do individuals who have health insurance still sometimes face financial difficulties in paying their health care bills?

194 C H A P T E R 8

7. How does underinsurance or the lack of insurance affect individuals’ health and health care?

8. What are the benefits and limitations of the ACA?

CRITICAL THINKING QUESTIONS

1. Researchers believe they have identified a gene that increases women’s risk of breast cancer. You are the chief administrator of a health insurance plan. One of your board members, whose mother died from breast cancer, argues that your plan should offer this test for free as a routine preventive procedure.

a. Explain to the board member what information you would want before you could make this decision and why you would want that information. Be sure to think about the consequences for the plan as a whole as well as for individual patients.

b. Would you want different information and reach a different decision if you were a doctor in private practice? If you were a patient?

2. How do we ration health care in our present system? What are the financial costs of this rationing? What are the social costs?

3. How are the costs of care distributed among U.S. residents now? Be sure to think about not only costs paid out of pocket but also costs paid through taxes for government-provided care. How would those costs be distributed under a single-payer national health plan?

195

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Health Care Around

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196 C H A P T E R 9

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand the most important measures for evaluating health care systems internationally.

● Compare the strengths and weaknesses of health care systems in the most developed nations.

● Identify the special problems faced by health care systems in the less developed nations.

Some years ago, American journalist T. C. Reid moved to London with his young family. As he writes:

Barely a week after we arrived in the U.K., our youngest daughter woke up with a painfully infected ear, bright red and swollen like a chestnut. We could guess the cause—it must have been that dubious ear piercing shop in one of the charming street markets—but had no idea how to fix the problem. We had barely unpacked our suitcases and certainly hadn’t had time to find a local doctor. Feeling desperate, we piled into a roomy black cab and asked to go to the nearest hospital. Within minutes, we were in the emergency room (that is, “casualty” ward) at St. Mary’s Hospital, an ancient, much-the-worse-for-wear institution. . . . St. Mary’s on Praed Street was the place where Sir Alexander Fleming discovered penicillin in 1928; it looked as if no one had painted the walls since then.

After a quarter-hour’s wait there, a gentle nurse and an authoritative doctor took command of our daughter’s case. They carefully removed the offending earring, reduced the swelling, treated the infection (with a form of penicillin), and offered a polite but firm instruction on the right way to care for the pierced ear. Our daughter—and her parents—felt an enormous sense of relief.

I pulled out my check book and waited for the bill. I knew this treatment was going to be costly—emergency rooms always are—but frankly, I was perfectly willing to pay for the excellent and reassuring medical care we had received. The nurse, evidently accustomed to American patients, smiled at my mistake. “You can put away your checks,” she said, crisply and proudly. “There won’t be a bill to pay. We do it a bit differently here. In the National Health Service, we don’t charge for medical treatment.” With that, she sent us home.

Had the same minor medical crisis occurred at home, we would have received the same level of professional treatment. But we would have received something else along with it: a pile of bills. Having had a similar experience with the emergency wards in the United States, I would expect that treatment . . . would have brought in bills of about $200 from the hospital, $150 or so from

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the doctor, and $100 from some lab technician. And I would likely have faced a three-month battle with an insurance company trying to get the bills paid. In Britain, there was no need to argue with the insurance company over the bill, because there was no bill. (Reid, 2009:117–118)

On television, in newspapers, and in public discussions, we often hear that the United States offers the best health care in the world. Yet other countries— both Western and non-Western, rich and not so rich—provide far better access to care for their citizenry at lower costs and with better health outcomes. In this chapter, we begin by looking at some basic measures for evaluating health care systems before we explore the systems in six other countries— Germany, Canada, Great Britain, China, Mexico, and the Democratic Republic of Congo (DRC).

The health care systems in Germany, Canada, and Great Britain have often been proposed as models for a revamped U.S. system. All of these systems are ranked higher than the U.S. system by the nonprofit Commonwealth Fund (2017c). In fact, the U.S. system has the lowest ranking among the 11 high-income nations studied by the Commonwealth Fund, based on overall health markers such as life expectancy, equitable distribution of health care costs among citizens, good health outcomes relative to health expenditures, and responsiveness to consumer needs. The health care systems in China and Mexico are not useful as models for the United States, but they do help us understand how poorer countries have tried and sometimes succeeded in improving their nation’s health despite limited re- sources. Finally, the DRC provides an example of what happens when health care systems collapse.

EVALUATING HEALTH CARE SYSTEMS

Universal Coverage

The most basic measure of any nation’s health care system is whether it provides universal coverage, guaranteeing health care to all citizens and legal residents of a country. The United States is the only more developed nation that neither provides health care to all citizens nor recognizes a right to health care (a topic discussed in Ethical Debate: Is There a Right to Health Care?). Instead, the U.S. gov- ernment provides insurance to only a small percentage of the population, and even under the Affordable Care Act (ACA) allows private insurers considerable leeway in deciding who to insure and how much to charge for that insurance. In contrast, all legal residents of Great Britain or Canada, regardless of income, place of residence, employment status, age, or any other demographic characteristic, can obtain state-supported health care—although they are guaranteed neither imme- diate service nor every service they want.

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Portability

A second important measure of health care systems is whether they offer portable benefits. As described in Chapter 8, most U.S. citizens receive their health insur- ance through their jobs, their spouses’ jobs, or their parents’ jobs, so they may lose their insurance if their family or work situation changes. Similarly, individuals who receive Medicaid can lose this coverage if they move to another state or if their income rises above the legal maximum, and those who retire or go on disability often find that they can’t move to another area because the health insurance they receive from their former employer won’t cover them elsewhere, and obtaining insurance on their own would be too expensive. In contrast, in the other more developed nations, individuals need not worry about losing their insurance no matter what changes occur in their personal lives.

Is There a Right to Health Care?

With the sole exception of the United States, every developed nation in the world considers health care a basic right. In the United States, on the other hand—and as continued debate over the ACA reveals—many question whether individuals have a right to health care, and no U.S. court has ever recognized such a right.

Those who argue against a right to health care draw on the language of individualism. Individualism refers to a set of cultural beliefs and practices that stresses the autonomy, equality, and dignity of individuals and therefore rejects the idea that society should mandate certain rights for all members of a society (Daniels and Roberts, 2008). Those who support individualism argue that in asserting individuals’ rights to health care, we implicitly assert that health care workers have a duty to provide that care. In so doing, therefore, we restrict the rights of health care workers to control their time and resources. If we would not force a baker to give bread to the hungry, how can we force doctors to give their services away or restrict what patients doctors see, what services they provide, and what charges they assess?

Similarly, in asserting a right to health care, we implicitly assert that all members of a society have a duty to pay the costs of that care. When we subsequently use tax dollars to pay for health care, we restrict the rights of individuals to spend their money as they please. Some individuals, both rich and poor, might consider this a good investment, but many others would prefer to choose for themselves how to spend their money.

Moreover, according to those who take this position, asserting a right to health care fails to differentiate between unfortunate circumstances and unfair ones (Daniels and Roberts, 2008). Although it is certainly unfortunate that some individuals experience pain, illness, and disability, it is not necessarily unfair. Society may have an obligation to intervene when an individual unfairly experiences disability because another acted negligently, but society can’t be expected to take responsibility for correcting all inequities caused by biological or social differences in fortune.

Finally, if we assert that individuals have a right to demand certain social goods from a society, where do we draw the line? Do individuals have a right only to a minimum level of health care, or do they have a right to all forms of health care available in a given society? And if we grant individuals a right to health care, how can we deny them a right to decent housing, education, transportation, and so on?

Those who argue in favor of a right to health care, on the other hand, draw on the language of social justice (Daniels and Roberts, 2008). Believing each individual

ETHICAL DEBATE

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Geographic Accessibility

Even those who have health insurance can face obstacles to receiving care, de- pending on where they live. Both rural areas and poor inner-city neighborhoods in the United States typically have relatively few health care providers per capita. Meanwhile, other areas have an excess of doctors—a situation that can pressure doctors to increase their prices or perform perhaps unnecessary procedures to maintain their incomes despite competition for patients (Aizenman, 2010; Boden- heimer, 2005c). These problems suggest that for both economic and medical reasons, we should also evaluate health care systems according to whether they include mechanisms for encouraging an equitable distribution of doctors such as providing low-cost loans to medical students who promise to work for a few years in underserved areas.

has inherent worth, they reject the distinction between unfortunate and unfair circumstances. Instead, they argue that each individual has a right to at least a minimum level of health care. Moreover, they argue that all members of a society are interdependent in ways that a rhetoric of individualism fails to recognize. For example, doctors who believe they should have full control over how and to whom they provide services fail to recognize the many ways they have benefited from social generosity. Medical training relies heavily on tax dollars, as do medical research projects, technological developments, hospitals, and other health care facilities. In accepting these benefits of tax support, therefore, doctors implicitly accept an obligation to repay society through the health care they provide.

Similarly, those who support a right to health care argue that to consider the decision to purchase health care as simply an individual choice misrepresents the nature of this decision because it hardly makes sense to define something as a choice when the alternative is death or disability. Nor does it make sense to talk about the purchase of health care as a choice when individuals can do so only by giving up other essentials such as housing or food.

Finally, those who support a right to health care recognize that society could never afford to provide all available health services to everyone but argue that this should not limit society’s obligation to provide a decent minimum of care to all. Doing any less, they argue, denies the basic worth of all humans.

Sociological Questions

1. What social views and values about medicine, society, and the body are reflected in the debate over a right to health care? Whose views are these?

2. Which social groups are in conflict over this issue? Whose interests are served by offering universal health care? Whose interests are harmed?

3. Which of these groups has more power to enforce its view? What kinds of power do they have?

4. What are the intended consequences of our current system, which rejects the idea that individuals have a right to health care? What are the unintended social, economic, political, and health consequences of this system?

200 C H A P T E R 9

Comprehensive Benefits

Another important measure of health care systems is whether they offer all of the essential services individuals need. The difficulty lies in defining what is essential. Although all observers would agree that comprehensive health care must include coverage for primary care, agreement breaks down quickly when we begin discussing specialty care. Some individuals, for example, consider coronary bypass surgery an essential service, but others consider it an overpriced and overhyped luxury. Similarly, some people favor offering only procedures necessary to keep patients alive, but others support offer- ing procedures or technologies such as hip-replacement surgery, home health care, hearing aids, or dental care, which improve quality of life but don’t extend life.

Any system that does not provide comprehensive benefits runs the risk of devolving into a two-class system in which some individuals can buy more care than others can. To those who believe health care is a human right, such a system seems unethical. Others object to such systems on economic grounds, arguing that it costs less in the long run to plan on providing care for everyone than to hap- hazardly shift costs to the general public when individuals who can’t afford care eventually seek care anyway.

Affordability

Guaranteeing access to health care does not help those who can’t afford to purchase it. Consequently, we also must evaluate health care systems according to whether they make health care coverage affordable, restraining the costs not only of insur- ance premiums but also of copayments, deductibles, and other crucial services such as prescription drugs and long-term care. Although the ACA offers some subsidies and tax credits to help people pay their premiums, it still leaves millions with many indeterminate health care bills.

For health care to be affordable, individual costs must reflect individual incomes. Around half of all insured Americans receive their insurance through employers. Typically, employers pay part of the cost for that insurance and de- duct the rest from each employee’s wages. Because low- and high-wage workers have their salaries reduced by the same dollar amount, low-wage workers are effectively hit harder: Paying $3000 per year for health insurance might, for example, force a wealthier worker to scale back his vacation plans but force a poorer worker to put off fixing his roof. For this reason, the U.S. system is considered financially regressive in that poorer people must pay a higher percentage of their income than do wealthier people. In contrast, in countries such as Great Britain and Canada, health coverage is paid for through graduated income taxes. Poorer persons pay a lower percentage of their income for taxes and therefore for health care than do wealthier persons, creating a financially progressive system. Either way—whether through taxes or lowered wages— the nation’s citizens pay all the costs of health care. The only difference is who pays how much.

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Financial Efficiency

Another critical measure of a health care system is whether it operates in a finan- cially efficient manner. Currently, the multitude of private and public insurers in the United States substantially drives up the administrative costs of the health care system (Himmelstein et al., 2014). At the same time, the atomized and essentially entre- preneurial nature of our health care system makes it virtually impossible to impose effective cost controls. For example, doctors have responded to financial limits on Medicare payments by raising the fees they charge to non-Medicare patients, a pro- cess known as cost shifting. Neither of these problems was addressed by the ACA.

Consumer Choice

Finally, we need to evaluate health care systems based on whether they offer consumers a reasonable level of choice. Currently, wealthy Americans can pur- chase any care they want from any willing provider. In addition, Americans who have fee-for-service insurance can seek care from any provider as long as they can afford the copayments and deductibles, and—if their plan uses managed care—as long as their insurer approves the care. Finally, those who have Medic- aid or Medicare coverage can obtain care only from providers willing to accept the relatively low rates of reimbursement offered by these programs, and those who have no health insurance can obtain care only from the few places willing to provide care on a charity basis. The ACA, however, has increased options for many Americans.

As we will see later in this chapter, in Mexico, China, and the DRC, some cit- izens have far greater choices in health care than do others, whereas in Germany, Great Britain, and Canada, all citizens have similar levels of health care choice.

HEALTH CARE IN OTHER COUNTRIES

With these measures in mind, we can now look at the health care systems in Germany, Canada, Great Britain, Mexico, China, and the DRC. Germany, Can- ada, and Great Britain are all considered to be more developed nations, and each guarantees portable, affordable, and universal health care coverage to its citizens. In contrast, Mexico has just recently entered the ranks of the more developed nations, and China is still striving to reach that goal. Both Mexico and China are gradually improving their health care system, but progress in Mexico has been steady, whereas China’s health care system has experienced significant highs and lows. Finally, the DRC provides an example of the tremendous difficulties often faced by both the public and health care providers in the least developed nations. Despite their differences, however, most of the nations discussed in this chapter combine socialistic and entrepreneurial elements in their health care sys- tems. In contrast, health care in the United States and the DRC is primarily organized as an entrepreneurial system—that is, a system based on private enterprise and the search for profit. Table 9.1 summarizes the characteristics of these six health care systems.

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203H E A LT H C A R E A R O U N D T H E G L O B E

It is not surprising that each system described in this chapter has changed over time. What is more interesting is that the changes seem to have moved var- ious nations at least somewhat toward health care convergence—that is, to- ward becoming more similar to each other (Beckfield et al., 2013; Stevens, 2010). For example, the United States, Great Britain, and Germany all now utilize diagnosis-related groups (DRGs) to restrain costs.

Two major causes of this convergence are globalization and economic pres- sures. Globalization has expanded access to medical and scientific knowledge. Increasingly, doctors use medical journals and Internet resources from around the world to learn about new treatments. Similarly, medical and pharmaceuti- cal corporations now market new technologies internationally. Thus, doctors in many different countries are adopting the same technologies and placing similar economic pressures on their health care systems.

Second, whether a country’s economy is booming or weakening and whether its health care system is largely capitalist or largely socialist, the cost of health care can press governments to reduce costs. Countries with largely capitalist health care systems may do so by restricting the role of the market in health care, whereas countries with largely socialistic health care systems may do so by encouraging the role of the market. The latter situation in which countries begin encouraging the private purchase of health care, the private practice of medicine for profit, and the operation of market forces in health care overall is referred to as the privatization of health care. As in the United States (and as discussed in Chapter 8), privatiza- tion reflects a neoliberal perspective.

Germany: Social Insurance for Health Care

Modern Germany is the product of a tumultuous 20th-century history, includ- ing more than a decade of Nazism and the division of the country in two after its defeat in World War II. Yet despite the destruction wrought by two world wars and the economic stresses that accompanied the reunification of East and West Germany in 1990, the nation is a stable constitutional democracy and now enjoys one of the strongest economies in Europe. The gross national in- come (GNI) per capita is $49,530, compared to $58,030 in the United States (Population Reference Bureau, 2017). (These figures are given in “international dollars,” with $1 equaling the amount of goods and services one could buy for $1 in the United States.)

Structure of the Health Care System Health care in Germany is based on a system of social insurance (Commonwealth Fund, 2017c). Social insurance refers to insurance provided by large social groups (such as regions, occupations, or industries) to their residents or members. This system was adopted in 1883 by politicians who hoped that offering workers accessible health care, as well as hous- ing and unemployment and retirement benefits, would diffuse political tensions that might otherwise lead to a more radical redistribution of power and wealth in German society (Leith et al., 2009). Social insurance remains the center of the current German health care system.

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Purchasing Care As in the United States, nongovernmental insurance forms the basis of the German health care system (Commonwealth Fund, 2017c). But whereas U.S. insurance providers must compete to survive in a profit-driven mar- ket, in Germany around 90% of health insurance is provided by nonprofit social insurance groups known as sickness funds. For employed individuals, the cost of belonging to a sickness fund is around 15% of income. Approximately half of that cost is paid by the individual for his or her entire family and the remainder is paid by the employer. Because costs are based on income, the system, like Britain’s, is financially progressive.

Although all Germans are required to have health insurance, those who earn over a set threshold have the option of purchasing private health insurance instead of or in addition to sickness fund insurance. Around 10% of Germans now take this option.

Paying Doctors and Hospitals German doctors are paid differently depending on the nature and location of their work. Those who work in hospitals or for other organizations receive annual salaries, whereas those in private practice are paid on a fee-for-service basis. However, increasingly insurers are “bundling” payments, offering a set fee for doctors and other providers, both in and out of hospitals, who together care for patients with a specific condition such as diabetes or a hip joint that needs replacing. The hope is that integrating care across various providers will result in better health and lower costs—although there is concern that this struc- ture may instead lead to inefficient caregiving. Hospitals receive their operating budgets from the sickness funds and receive their capital budgets (for items such as new magnetic resonance imaging machines) from the government.

Access to Care All Germans are required to have health insurance, and all German health insurance programs are required to provide a comprehensive pack- age of health care benefits. With the exception of minimal copayments, insurance covers all costs of dental care, maternity care, hospitalization, outpatient care, pre- scription drugs, and preventive measures such as vaccinations. As a result, Germans have few incentives to put off obtaining needed care and see doctors an average of 10 times per person per year, more than twice as often as do U.S. citizens (OECD, 2018). Germans can see any doctors they like. However, they must first get referrals from their primary care doctors, except for emergency, gynecological, pediatric, dental, or eye care.

Controlling the Costs of Care A major factor driving up costs of health care in Germany is the oversupply of doctors. To control this, Germany forbids doctors older than age 68 from working for the sickness funds. In addition, doctors who open new practices in areas where many doctors already practice cannot receive reimbursement through the social insurance system.

To control hospital costs, Germany now uses a system similar to the DRG system in the United States. In addition, the government can restrain the pur- chase and use of unnecessary and expensive technologies because it determines hospitals’ capital expense budgets. Finally, to control drug costs, the sickness funds

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encourage doctors and consumers, through both education and economic incen- tives, to adopt more cost-effective drugs.

Two factors still hamper efforts to constrain costs. First, hospitals have opposed policies designed to shift care when warranted to less expensive outpatient settings because the hospitals fear their incomes will fall. Second, the vast number of insur- ance providers in the German system has kept administrative costs high.

Health Outcomes Whether because of its health care system or because of its high standard of living and commitment to providing social services to its popula- tion, Germany enjoys a high standard of health. Although conditions in the former East Germany remain poorer than in West Germany, those differences are rap- idly disappearing. Life expectancy in Germany now averages 80, two years more than in the United States (and with far less variation among its citizenry). Infant mortality in Germany is among the lowest in the world: 3.3 per 1000 live births compared with 5.8 in the United States (Population Reference Bureau, 2017).

Canada: National Health Insurance

Canada’s health care system is ranked second best (after Australia) among the 11 nations studied by the Commonwealth Fund (2017c). Like the United States, Canada is a financially successful democracy made up of various provinces and territories more or less equivalent to U.S. states. Although its GNI per capita of $43,420 is around one-third lower than that of the United States, its economy is strong. In addition, because of steady immigration, Canada’s population is younger on average than populations in the majority of more developed nations, which increases the likelihood of having a relatively healthy population.

Canada is also, however, a huge country, with vast social differences reflecting its vast geographic spaces. Its population is highly concentrated along its southern bor- der, as are most health care personnel and facilities. Neither health status nor health care access is as good in rural areas or in its remote northern regions, where many of the residents are poor Native Americans (known in Canada as indigenous peoples).

Structure of the Health Care System The backbone of the Canadian health care system is the Canada Health Act of 1984. That act stipulates that health in- surance must cover all medically necessary services except mental health care. In addition, insurance must be universal, portable from province to province, publicly administered on a nonprofit basis, and accessible to all regardless of ability to pay.

The Canadian system is built around public insurance paid for primarily by each Canadian province, with assistance from the federal government (Common- wealth Fund, 2017b; Duncan, Morris, and McCarey, 2009). For this reason, the Ca- nadian system is referred to as national health insurance, or (as the previous chapter noted) a single-payer system. In fact, however, the Canadian system is a decentralized one, with each province retaining some autonomy and offering a somewhat different health care system. Underpinning the system are payments that the federal government gives the provinces yearly to run their health care systems. To receive these payments, provinces must offer comprehensive medical coverage to

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all residents through a public, nonprofit agency. Although the details of coverage vary across provinces, each province must charge residents only minimal fees and must allow residents to move to another province without losing their coverage.

Purchasing Care Through a combination of federal and provincial taxes, the public health insurance systems cover 70% of all health care costs, including most costs for hospital and medical care and some costs for prescription drugs, dental care, long-term care, and mental health services (Duncan et al., 2009). Because the system is based primarily on graduated income taxes, it is financially progressive: Wealthier persons pay a higher proportion of their income in taxes and therefore pay more toward health care than do others.

The remaining 30% of health costs are divided about equally between private insurers and private individuals paying out of pocket. Private insurance takes two forms. Most commonly, Canadians purchase private insurance to cover services not included in the national health insurance system. In addition, some provinces now allow residents to purchase private insurance that covers services that are included in the national health system. Such insurance enables individuals to buy these services immediately rather than having to wait their turn in the national health insurance system.

Paying Doctors and Hospitals Hospital doctors in Canada are paid on salary. Most nonhospital doctors work in private practices and are paid on a fee-for-service basis by the government insurance systems. Doctors submit their bills directly to the health insurance system using fee schedules negotiated annually between the provincial med- ical associations and provincial governments. Unlike in the United States, doctors in Canada can’t balance bill (or “extra bill,” as it is known in Canada): billing patients for the difference between what the patients’ insurance will pay and what the doctor wants to charge. In addition, some provinces control costs by setting annual caps on the total amounts they will reimburse doctors. In practice, this means reimbursing doctors less for each service rendered as the total number of services rises.

Canadian hospitals (almost all of which are nonprofit) annually receive an operating budget and a capital expenditure budget from their provincial insurance system. Hospitals can spend their budgets as they like as long as they provide care to anyone in their region who needs services.

Access to Care Canadians average eight doctor visits per person per year com- pared with four visits for U.S. citizens (OECD, 2018). Waiting times for tech- nologically complex care have been a problem in Canada, although rarely in life-threatening circumstances. Most importantly, Canadians are far less likely than U.S. residents to go without needed health care for financial reasons or to risk bankruptcy if they do seek health care. Moreover, although Canadians are less likely to receive certain high-technology procedures such as coronary artery bypass surgery, this may reflect overuse in the United States rather than underuse in Canada.

Controlling the Costs of Care Costs of health care have risen rapidly in Canada, primarily because of population growth and increased prices for drugs

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and advanced technologies. The United States currently spends 17% of its gross domestic product (GDP) on health care, whereas Canada spends 11% (OECD, 2018).

How does the Canadian system restrain health care costs? Most important, a single-payer system dramatically reduces administrative overhead (Himmelstein et al., 2014). In a single-payer, nonprofit system, no one need spend money selling or advertising insurance, paying profits to stockholders, sending bills to multiple insurers and individuals, or tracking down those who don’t pay their bills. Nor is money spent collecting funds to run the system because those funds are already collected from the public through existing taxation systems.

The single-payer system also saves money by centralizing purchasing power. As the sole purchasers of drugs in Canada, the provinces have substantial leverage to negotiate with pharmaceutical companies regarding drug prices. Similarly, as the sole payer of doctors’ bills, the provinces have considerable bargaining power when negotiating with doctors over how much to reimburse doctors per service. Finally, as the sole payer of hospital budgets, the government can implement effi- cient regional planning and avoid unnecessary duplication of expensive facilities and services.

Nevertheless, costs have risen substantially. Paying doctors on a fee-for-service basis makes it more difficult for Canada to control medical costs. When, for example, the provinces banned balance billing, doctors responded by increasing the number of services they performed (with the provinces responding by reducing the amount they reimbursed for each service). Finally, Canadian hospitals, like U.S. hospitals, have reduced their costs by shifting toward outpatient services and shorter patient stays, thus moving some costs from the health care system to family caregivers.

Health Outcomes Despite continuing problems in access to health care, out- comes compare favorably with those in the United States. Infant mortality in Canada is 4.3 per 1000 births compared with 5.8 in the United States, and average life expectancy is three years longer in Canada. Of course, these health outcomes tell us more about social conditions than about the quality of health care. Never- theless, these data suggest that the Canadian health care system, although certainly not perfect, is superior to the U.S. system.

Great Britain: National Health Service

As the home of the Industrial Revolution, Britain for many decades was a leading industrial power. Along with its industrial strength came a strong labor movement as workers united to gain political power within Britain’s parliamentary govern- ment. As a result, a commitment to protecting its citizens, including a commitment to universal health care coverage, has long been central to Britain’s identity. Be- ginning in the 1980s, however, the nation’s economy declined while health care costs rose. To restrain those costs, subsequent governments instituted a series of reforms designed to introduce market principles into the health care system while retaining universal health coverage (Lopes, Coppola, and Riste, 2009). Currently, GNI per capita in Britain is $42,100, compared to $58,030 in the United States.

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Structure of the Health Care System Whereas Canada provides its citizens with national health insurance, Great Britain since 1948 has provided care through its National Health Service (NHS) (Commonwealth Fund, 2017c). In Can- ada, the government provides insurance so individuals can purchase health care from private practitioners. In Great Britain, on the other hand, the government directly pays virtually all health care costs. As a result, the two systems look quite similar to health care consumers but differ substantially from the perspective of hospitals, health care workers, and the government. This section focuses on the structure of the NHS in England, one of the three countries that (along with Scotland and Wales) make up Great Britain.

Purchasing Care Unlike U.S. citizens, most English citizens rarely see a medical bill, an insurance form, or any other paperwork related to their health care. The NHS uses tax revenues to pay virtually all costs for a wide range of health care services, including medical care, visiting nurses for the homebound, homemakers for chronically ill persons, and some aspects of long-term care.

The NHS receives its funds almost solely through general taxation, with small supplements from employers and employees. As in Canada, because the health care system is paid for through graduated income taxes, it is financially progressive.

Paying Doctors and Hospitals As in Germany, almost all medical specialists work as salaried employees of the NHS at hospitals or other health care facilities, although they can earn extra income by seeing private patients. In contrast, most English general practitioners work as private contractors, increasingly in large group practices. General practitioners are paid by capitation, a system in which doctors are paid a set fee per year for each patient in their practice regardless of how many times they see their patients or what services the doctors provide. In such a system, doctors lose income when they provide more services. In addition, general practitioners receive financial supplements if they have low-income or elderly patients, practice in medically underserved areas, or meet government tar- gets for preventive services such as immunizing more than a certain percentage of children in their practices.

The vast majority of hospitals in England belong to the government (although some now include beds for private patients). The hospitals operate semi- autonomously, but regional NHS officials and hospital administrators work to- gether to ensure that each hospital can offer quality care to patients.

Access to Care Under the NHS, individual financial difficulties no longer keep English citizens from receiving necessary medical care. Waits can be uncomfort- ably long for nonemergency care, but any case delayed more than 18 weeks is reported to national authorities for further action. In addition, the NHS has re- duced substantially the geographic inequities that for generations made medical care inaccessible to many rural dwellers, although access to care remains a problem in poor, inner-city neighborhoods. Britons average five doctor visits per person per year compared with four visits for U.S. citizens (OECD, 2018). Access to high-technology care and expensive new drugs, however, remains lower than in

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the United States. That said, in the United States access to treatments is limited only by the ability to pay, whereas in England a national panel of medical experts decide which services should be offered to citizens based on their effectiveness and then sets the prices for those services. Those prices are considerably lower than average prices in the United States and must be honored by drug manufacturers, private practice doctors, and anyone working under NHS auspices. For example, until it was taken off the market in 2011, many U.S. health insurers (including Medicare) paid up to $100,000 per patient per year for the anticancer drug Avas- tin, even though strong evidence suggested it was ineffective (Kolata and Pollack, 2008). In contrast, the NHS decided against covering it from the start, arguing that NHS money would be better spent on less expensive drugs with better track records. In sum, both the American and British systems limit access to care but in different ways with different consequences.

Controlling the Costs of Care Great Britain spends around 10% of its GDP on health care, almost half the percentage spent by the United States (OECD, 2018). Like Canada, Britain has made its health funds go further than they otherwise would through national and regional planning and by keeping salaries relatively low. Because the government owns a large proportion of health care facilities and employs a large proportion of health care personnel, it can base decisions about developing, expanding, and locating high-technology facilities on a rational assess- ment of how best to use available resources and can avoid the unnecessary prolif- eration of expensive facilities. Similarly, because it is such a large buyer, the NHS can negotiate drug prices effectively with pharmaceutical firms.

In addition, England has attempted to restrain government health care expen- ditures by promoting the privatization of care. Privatization was initially promoted in the late 1990s by a liberal government that saw it as a way to quickly expand the numbers of health care providers and access to health care. More recently, con- servative governments have adopted privatization as a way to reduce government expenditure and expand the nation’s market economy. Private companies can now run primary care practices funded by the NHS, private hospitals can compete for NHS contracts against public hospitals, and NHS hospitals can now offer a variety of services on a cash basis. In addition, officially commissioned groups of general practitioners in each region are now required to put services (such as nursing home or hospital care) up for bid rather than deciding based on their own judgment whether to use for-profit or NHS services. Finally, and as in Germany, both private and public hospitals have been pressured to control costs by a DRG sort of system.

Health Outcomes Despite some access problems in the NHS, health outcomes have remained good. Infant mortality is lower than in the United States (3.9 versus 5.8 per 1000), and life expectancy is two years longer (Population Reference Bureau, 2017). However, individuals’ social class and ethnicity continue to affect both health and health care access, although considerably less than in the United States. Moreover, the current budget crisis may well bring substantial cuts to the NHS despite high popular support for the program.

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China: Promises and Perils

Although many observers have proposed using the health care systems of Ger- many, Canada, and Great Britain as models for a restructured U.S. health care system, few would seriously propose China (officially known as the People’s Re- public of China) as a viable model. China’s culture differs greatly from that of the United States, so its citizenry has distinctly different values regarding what con- stitutes an acceptable health care system. In addition, China’s GNI per capita of only $15,500 (Population Reference Bureau, 2017) severely limits its options, and the remaining communistic underpinnings of its economy make a different set of health care options feasible there than in the United States. (These data and this discussion don’t include Hong Kong, which only became part of China in 1997 and operates under a separate political structure.) That said, China’s story suggests how less developed nations can protect their citizens’ health if they make a long- term commitment to primary care and public health (LaFraniere, 2010; Riley, 2007; Wang, Xu, and Xu, 2007).

China’s health care system reflects its unique history and situation. When the Communist Party in 1949 won control of mainland China after many years of civil war, it found itself in charge of a vast, poverty-stricken, largely agricultural, and densely populated nation. Most people lived in abject misery while a small percentage enjoyed great wealth. Malnutrition and famine occurred periodically, life expectancies for both men and women were low, and infant and maternal mortality were shockingly high. In urban areas, only the elite typically could afford medical care. In rural areas, where most of the population lived, Western medical care barely existed.

Structure of the Health Care System In 1950, one year after winning control of mainland China, the Communist government announced four basic princi- ples for the new nation’s health care system (Anson and Sun, 2005:10). First, the primary goal of the health care system would be to improve the health of the masses rather than of the elite. Second, the health care system would emphasize prevention rather than cure. Third, the health care system would integrate Western medicine with traditional Chinese medicine. And fourth, to attain health for all in a country with few doctors and widespread poverty, China decided to rely heavily on “physician extenders” and mass campaigns.

The term physician extenders refers to individuals (such as nurse practi- tioners and physician assistants in the United States) who can substitute for doctors in certain circumstances. China’s unique use of physician extenders began in 1965 with the development of barefoot doctors (now known as village doctors). These workers came from rural backgrounds and received around three months of train- ing supplemented by continuing education. After their training, they alternated between working in health care and in agriculture. The government supported this development as a way to improve health in rural areas and reduce the power of the doctors from the pre-Communist elite. Assistant doctors (who receive three years of postsecondary training) were later added to the mix to provide minor surgery as well as primary care.

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Similarly, in urban areas, street doctors were trained to perform a similar role, offering both primary care and basic emergency care, as well as health education, immunization, and assistance with birth control. Street doctors have little formal training and work in outpatient clinics under doctors’ supervision.

The second unique feature of China’s health care history was its use of mass campaigns (Horn, 1969). For example, to combat syphilis, which was endemic in much of China when the Communists came to power, the government first closed all brothels, outlawed prostitution, and retrained former prostitutes for other work. They then trained thousands of physician extenders to identify persons likely to have syphilis by asking 10 simple questions, such as whether the person had ever had a genital sore. By so doing, the government made manageable the task of finding—in a population of more than 500 million people—the small percentage of people who needed to be treated for syphilis. The government also mandated testing for persons applying for marriage licenses, newly drafted soldiers, and en- tire populations in areas where syphilis was especially common. These measures were in no way democratic, but they dramatically reduced the prevalence of syphilis in China.

Purchasing Care By the 1980s, China’s economy was changing from a largely socialized and centrally controlled system toward a more decentralized, econom- ically heterogeneous model. These changes would be mirrored in the country’s health care system (Chen, 2001; Tu, 2019; Wang et al., 2007).

For rural Chinese—around 60% of China’s population—the move to a less-socialized economy led to a sharp decline in access to health care (Wang et al., 2007). Before then, rural residents received basic health care (of varying quality) at little or no cost through the agricultural communes where they lived and worked. Within these communes, members shared all profits and costs, in- cluding those for health care. Each commune had between 15,000 and 50,000 members, several village doctors, and a clinic staffed by assistant doctors.

Beginning in 1978, the central government began pulling back from its so- cialist principles and introducing market principles (Tu, 2019). Over the next few years, most agricultural communes reverted to their original noncommunal village structures, with each family given land to farm by the village. Families now kept their profits but were responsible for their own welfare if costs exceeded profits. Because of this shift in financing, the former communes no longer earned suffi- cient revenues to continue providing health care. Instead, rural residents had to shift to purchasing primary health care on a fee-for-service basis—if they could afford it.

Similarly, as the government shifted to emphasizing economic development and away from providing social services, insurance coverage decreased in urban areas (Tu, 2019). Individuals who worked in the growing private sector were espe- cially likely to lack insurance. As a result, paying for health care out of pocket has become more common.

Between 2005 and 2011, however, insurance coverage soared from less than 50% to virtually 100%—a remarkable and unparalleled achievement (Yu, 2015). That change was spurred by the 2003 epidemic of severe acute respiratory

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syndrome (SARS) in China, which highlighted the need for a strong health care system, and was made possible by China’s newly strong economy (Yu, 2015). Chi- na’s decision to refocus on its health care system was also reinforced by socialist be- liefs that emphasize working to improve the welfare of the population (Tu, 2019; Yu, 2015).

Paying Doctors and Hospitals Currently, nonhospital doctors in China work primarily on a fee-for-service basis, and hospital doctors work on salary. In addi- tion, many townships (made up of six or more rural villages) have a clinic where doctors work on salary but are allowed to divide among themselves any profits that the clinic generates. As a result, doctors have an incentive to order unnecessary tests and procedures (Wang et al., 2007).

Similarly, hospitals now receive only a small portion of their budgets from the government. As a result, they are under great pressure to generate income by sell- ing drugs and services and by starting other income-generating enterprises. Con- sequently, hospital patients run considerable risk of receiving unnecessary (and potentially dangerous) drugs, surgeries, and other treatments (LaFraniere, 2010).

Access to Care Although access to insurance has risen dramatically, access to care remains an issue. Many services are not covered by insurance, and prices for those services have risen. Rural areas remain especially underserved with fewer doctors, fewer well-trained doctors, and fewer hospital beds. And rural residents who move to cities cannot use their insurance because insurance only covers care in the geo- graphic area in which one was born.

Primary care remains affordable throughout the nation, but there are few well-trained primary care doctors per person. As a result, people often turn to hospitals, which can be prohibitively expensive for anything beyond basic care). Moreover, both hospitals and clinics are so overburdened that it is difficult to get timely care (Wee, 2017).

That said, the government is moving to increase coverage for various medical services and to improve access to care. It has established a national fund to sup- plement the health care budgets of poorer regions and an insurance program for childhood immunizations. Those who purchase this insurance for a small premium receive free immunization for children up to age seven and free treatment if a child develops one of the infectious diseases the immunization program is supposed to prevent. More than half of all children in the country belong to this program. Another program offers prenatal and postnatal care to women and infants. Finally, the country has moved in the last few years to merge its rural and urban health care systems, which should lead to more equitable access to needed care (Com- monwealth Fund, 2017c).

Health Outcomes Although China’s economy is developing rapidly, it still spends only around 5.2% of its GDP (around $733 per person) on health care, considerably less than that spent in the more developed nations (OECD, 2018). Nevertheless, as its economy has grown, its health outcomes have improved. Whereas in 1960 infant mortality was 150 deaths per 1000 and life expectancy

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was 47 years, currently infant mortality is 10 per 1000 and life expectancy is 77, only four years lower than in the United States (Population Reference Bureau, 2017). Although large and increasing differences in health status remain between rural and urban dwellers, China now stands on the cusp of the epidemiological transition, with chronic and degenerative diseases increasingly outpacing infec- tious diseases as the leading causes of death.

Nevertheless, some regions of China continue to face health problems that have long characterized the less developed nations such as insufficient access to clean drinking water. The rise of a market economy has contributed to these problems as pressure to develop profitable industries has increased water and air pollution and decreased occupational safety, especially in rural areas (Chen, 2001). Similarly, pressures on the health care system to control costs and generate profits has led to a decreased emphasis on preventive care and increased emphasis on profit-generating treatments and diagnostic procedures.

Despite these problems, however, China offers lessons on how to improve health in less developed nations. As Chapter 4 described, three factors seem to explain how China (like Sri Lanka, Costa Rica, Vietnam, and Cuba) achieved excellent health outcomes at low cost (Caldwell, 1993; Riley, 2007). It is not surprising that health outcomes improved when access to medical care improved. But improved health out- comes depended even more on emphasizing family planning and increasing education. Increasing women’s education was especially important. Once women’s educational levels increased, their power in the family increased, giving them greater control over family planning. Women’s lives thus were less often cut short by childbirth, and their babies were born healthier. In addition, as women’s status rose, they and the children who depended on them more often received a fair share of the family’s food, thus reducing malnutrition and increasing life expectancies.

Mexico: Moving toward Equitable Health Care

Understanding Mexico’s health care system is particularly important for U.S. citi- zens because Mexico shares a long and permeable border with the United States. People routinely travel across the border in both directions for work or pleasure, bringing their diseases with them. In addition, both Mexicans and U.S. citizens sometimes cross the border to seek health care, although Mexicans more often travel north to seek medical care for life-threatening health conditions, and U.S. citizens more often travel south to seek inexpensive cosmetic surgery, dental work, or medical drugs.

Mexico has only recently entered the ranks of the more developed nations and still has much in common with the less developed nations. As Mexican in- dustry has developed, many people have moved off the land, and now more than three-quarters of Mexico’s population live in cities. Those cities contain both middle-class neighborhoods that enjoy health and living conditions similar to those found in the more developed nations and impoverished slums that lack such basic facilities as running water and sewer systems. These slums are inhabited primarily by migrants from rural areas. Rural areas, especially those inhabited pri- marily by indigenous peoples (similar to Native Americans in the United States),

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generally are poor, and around 40% lack sewer systems (Pan American Health Organization, 2012). GNI per capita remains only $17,740—considerably higher than in China but far lower than in the United States or in the European nations discussed in this chapter (Population Reference Bureau, 2017).

Structure of the Health Care System Unlike any of the other countries de- scribed in this chapter, Mexico has a three-part system for health care: (1) private health care and health insurance for the wealthiest, (2) a government-provided insurance program for salaried workers (Social Security), and (3) a separate gov- ernment-provided insurance program for everyone else (Seguro Popular) (Frenk et al., 2006). This three-tiered system is a product of Mexico’s unique history in which revolutionary fervor and conservative sentiments have always counterbal- anced each other and in which the social and economic division between indige- nous people (who now make up less than 10% of the population) and others (who are primarily a mix of Spanish and indigenous people) has remained important.

Over the centuries, Mexico has experienced several revolutions—some vio- lent and some at the ballot box. Throughout the 20th century, these revolutions resulted in gradual improvements in the health care available to Mexico’s citizens. In 1917, Mexico’s new constitution first gave the federal government responsibil- ity for health care. The government soon began providing funds for rural clinics staffed by health aides and, by the 1930s, began requiring all new physicians to work for a year in a rural community.

The next major change in the health care system occurred in 1942 when the government established the Social Security program and opened a network of modern health clinics and hospitals around the country for Social Security members. However, that program covered only salaried workers—approximately half the population—leaving many others with no access to health care or with crushing debts if they seek such care. Consequently, in 2003, Mexico passed a law aimed at reforming this system (Knaul et al., 2012). Under the 2003 law, all Mexicans not eligible for Social Security can instead obtain membership in an- other government-run health insurance program known as Seguro Popular (Pub- lic Insurance). Membership is free for the poorest 20% of Mexicans and available on a sliding scale to all others. Less than a decade later, more than 50 million people had enrolled in the program, giving Mexico essentially universal health in- surance coverage (Knaul et al., 2012). However, between 4 million and 12 million Mexicans—most of them from rural, indigenous communities—cannot enroll in the program because they lack birth certificates (Telesur, 2016).

Other inequities still remain within the system (Knaul et al., 2012). Social Se- curity provides a more comprehensive package of health benefits than does Seguro Popular, and urbanized and wealthier regions continue to have more and better health care providers and facilities than do rural and poorer regions under both Social Security and Seguro Popular. Although these inequities are diminishing, the system as a whole remains underfunded, so problems are likely to continue.

Purchasing Care Mexicans typically pay only small copayments or other fees for their health care. Fees are waived for the poorest Mexicans.

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Paying Doctors and Hospitals Most Mexican doctors work as salaried gov- ernment employees, although most also take private, fee-for-service patients on a part-time basis, and some work solely for private patients. Public hospitals receive their funds from the government out of tax revenues.

Access to Care Individuals who purchase health care in the private sector have, of course, a wide choice of doctors and hospitals. Most Mexicans, however, must use the doctor or the clinic to which they are assigned for primary care (although in theory they have some choice). To obtain specialty care, patients must first get referrals from their primary care doctors. Such referrals can be difficult to get, however, because of government cost controls that restrict the number of practicing specialists. For the same reason, patients who do get referrals typically have long waits before they can get appointments with specialists. As a result, many patients subvert the system by instead seeking specialty care at emergency clinics or from private doctors if they can afford it.

Mexicans average three doctor visits per person per year compared with four visits for U.S. citizens (OECD, 2018). Their access to technologically intensive care, however, remains limited. In addition, these services are haphazardly dis- tributed, with more services available in cities and wealthier regions (most in the north) than in rural areas and poorer regions (most in the south). Recent reforms, however, have reduced these differences (Knaul et al., 2012).

Health Outcomes Although Mexico remains rife with social and economic in- equities and resulting inequities in health, it has nevertheless achieved notable im- provements in health outcomes for much of its population. Consequently, by some

Although its health care system is far from perfect, Mexico is working hard to improve access to medical care across the country, including in rural areas inhabited largely by indigenous people.

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measures, Mexico appears to have completed the epidemiological transition— cancer and heart disease now kill more Mexicans than do infectious diseases, and life expectancy is 77, only two years less than in the United States (Population Reference Bureau, 2017). Infant mortality, child mortality, and maternal mortality all decreased substantially between 2000 and 2010 (Knaul et al., 2012).

These health outcomes have been achieved at relatively little cost. Mexico spends just over $1000 per person on health care—around 6% of its GDP, com- pared to 17% in the United States (OECD, 2018).

Democratic Republic of Congo: When Health Care Collapses

Current conditions in the DRC are the result of more than a century of corrupt and unstable governments. During the 1880s, King Leopold II of Belgium gained control over what was then known as the Congo Free State, holding it as his pri- vate property. Although Belgian administrators helped develop basic infrastructure such as roads and hospitals, they also exploited natural resources for Belgium’s benefit, used brutal force when it suited their purposes, kept virtually all power in Belgian hands, and inflamed ethnic conflict among Congolese ethnic groups to keep them from uniting against Belgian control.

Belgium relinquished control over the DRC in 1960. Since then, the country has been governed primarily by a series of corrupt, ruthless dictators (often funded by the United States for its own purposes). To make matters worse, beginning in 1998, the country was torn by a ferocious civil war fueled by interethnic conflict and competition over valuable minerals. The numbers of dead from that war ap- proach those from World War II, and the widespread use of mass rape as a weapon stunned the world.

Although the civil war officially ended in 2003, the violence continues, and the central government’s control over the military, paramilitary groups, and the public remains fragile. Moreover, years of warfare led to environmental destruc- tion, the abandonment or destruction of agricultural lands, and large-scale move- ment of citizens away from rural war zones into substandard, temporary housing in cities. All these factors have fed malnutrition and disease, including preventable outbreaks of cholera, measles, and malaria—and, most ominously, Zika and Ebola viral diseases (Doctors Without Borders, 2014). The DRC remains one of the world’s poorest nations, with a GNI per capita of only $730 (Population Refer- ence Bureau, 2017).

Structure of the Health Care System On paper, the health care system in the DRC consists of a network of hospitals, primary care clinics, and public health workers distributed around the country’s numerous health districts (Inungu, 2010). These days, however, it is difficult to even talk about a health care system in the DRC. During the civil war, many doctors fled rural areas or fled the nation altogether, many hospitals were damaged or destroyed, and many pharmacists lost access to basic medications. Although conditions have improved since then in urban areas (primarily because of disease-specific health programs sponsored by the World Bank, World Health Organization, and other international nonprofit

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organizations), the situation remains dire. In areas where conflict continues, health care personnel have been harassed or threatened, and many clinics have been aban- doned (Doctors Without Borders, 2014).

Purchasing Care Although treatment in state-run clinics and hospitals is supposed to be offered at low prices, in reality patients and their families are often expected to pay for everything, including medicines, bandages, and other supplies. Moreover, even the lowest of fees are too high for many Congolese to pay. Others may decide against going to a doctor because they know they can’t afford any medicines that the doctor might prescribe (Doctors Without Borders, 2014).

Because of both cultural traditions and a lack of access to Western medicine, many Congolese rely on homemade herbal remedies or seek care from traditional midwives or traditional healers called ngangas (Inungu, 2010). Ngangas are be- lieved able to determine whether an illness was caused by natural or supernatural forces and to prescribe appropriate treatments such as wearing a talisman to ward off evil or drinking an herbal potion. Some of the treatments used by traditional practitioners undoubtedly help (if only through a placebo effect), but others un- doubtedly cause harm.

Paying Doctors and Hospitals In theory, doctors and hospitals receive regular salaries and budgets from the federal government. In practice, many doctors have been paid little or nothing for years, so they support themselves by charging fees to patients and their families (Michon, 2008). Most hospitals now receive most of their funding from nonprofit organizations based in the more developed nations.

Access to Care According to the U.S. Agency for International Development (2018), 70% of Congolese people have little or no access to modern medical care. Most of the rest rely on temporary facilities staffed by international aid workers. Meanwhile, the wealthiest Congolese travel to South Africa or elsewhere when- ever they need care (Inungu, 2010).

Health Outcomes By all measures, health outcomes in the DRC are abysmal. Average life expectancy is only 60 years, far below that in most nations around the world. Similarly, 69 of every 1000 babies die in infancy—12 times higher than in the United States (Population Reference Bureau, 2017). That said, these numbers are considerably better than they were just a few years ago.

IMPLICATIONS

A critical approach to health care reform suggests that for true structural changes to occur in the U.S. health care system, we must be willing to challenge the power dynamics underlying the current system—something that did not happen with passage of the ACA. Anyone interested in promoting such change can benefit from the experiences of other countries that have successfully done so.

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Germany’s example suggests that it is possible to have an effective and cost- efficient system even with many different insurers—although in Germany, all the insurers are nonprofit. Similarly, Canada’s history suggests that eliminating private insurers—major power holders in the current system—can reduce costs substan- tially by eliminating the costs of selling, advertising, and administering the various insurance plans. Eliminating private insurers also eliminates the costs that accrue when doctors, hospitals, and other health care providers must track and submit bills for each client to each insurance company.

Although it is unlikely that the United States would ever go so far as to estab- lish a national health system as Britain has done, Britain’s experience illustrates the benefits of centralizing control. And all of the countries described in this chapter (except the DRC) illustrate how establishing government control over both op- erating and capital budgets for hospitals and other facilities can restrict the dupli- cation of services and proliferation of technologies that have driven up the costs of the existing system. By the same token, establishing a national fee schedule for service providers, such as Canada uses, would enable the government to restrict the rise of those fees. Even more control is possible if the government, like Brit- ain’s, restricts doctors to salaried practices so they can’t increase their incomes by increasing the number of procedures they perform. At the same time, mandating national health coverage, regardless of the nature of the system, would guarantee a large enough risk pool to make community rating feasible and affordable. Finally, using income taxes to pay for health care would more equitably distribute the costs of financing the system.

These issues may all come to the fore again as debate continues over repealing or revising the ACA.

SUMMARY

1. Health care systems can be evaluated according to whether they offer universal coverage, portable and comprehensive benefits, geographically accessible care, affordable coverage, financial efficiency, and consumer choice.

2. Globalization has combined with economic pressures to lead to health care convergence. Countries that are primarily capitalist have restricted market forces in health care; countries that are primarily socialist have increased market forces.

3. Health care in Germany is overwhelmingly obtained through nonprofit social insurance plans known as sickness funds. Social insurance refers to insurance provided on a nonprofit basis by social groups such as cities, occupations, or industries.

4. Canada offers universal coverage through a single-payer (government- run) National Health Insurance program. Governments provide Canadian hospitals with their operating and capital expenditure budgets. Hospital doctors are paid on salary, and primary care doctors are paid fee-for-service, with fees negotiated between medical associations and the government.

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5. Canadians have greater access to care than do U.S. citizens, with better outcomes and lower costs overall. However, reductions in federal subsidies for health care have led to longer waiting lines and increased pressure for privatization.

6. Great Britain provides universal access to health care through its government-run National Health Service. Primary care doctors are paid by capitation; specialists are salaried government employees.

7. By centralizing purchasing power, Canada, Germany, and Great Britain have gained the ability to effectively negotiate prices with health care providers and thus keep down costs. By controlling hospital budgets, these governments have reined in unnecessary duplication of expensive services. By using single-payer systems, Canada and Great Britain have dramatically reduced administrative overhead.

8. To control costs, Canada, China, and Great Britain have made some moves toward privatization of health care.

9. By emphasizing mass campaigns and physician extenders, China was able to improve access to care and quality of care for millions of poor citizens. Life expectancy also rose because the government committed to family planning and to public education for men and, most important of all, women.

10. As China’s economy became more capitalistic and decentralized, it moved toward a fee-for-service system. Access to care declined, especially in rural areas. Since the beginning of the new millennium, however, the government has sought to merge market reforms with its socialist underpinnings and has worked to improve access to health care and reduce inequities in access.

11. Mexico now provides essentially universal health care access. However, that access comes within a three-tiered system: (a) private health care for those who either have no health insurance or believe that purchased care is higher quality, (b) a government-provided insurance program for salaried workers, and (c) a separate government-provided insurance program for everyone else. Moreover, urbanized and wealthier regions continue to have more and better health care providers and facilities than do rural and poorer regions.

12. Conditions in the DRC illustrate how a health care system can collapse and the consequences when that happens.

REVIEW QUESTIONS

1. Define the eight measures of health care systems, and explain why each is important.

2. What is health care convergence? What evidence of convergence can be found in the histories of health care in Great Britain and China?

3. How are doctors and hospitals paid in Canada? In Great Britain?

4. What is the difference between national health insurance and a national health service?

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5. How does access to primary and hospital care in Canada compare with access to care in the United States?

6. What aspects of the health care systems in Canada and Great Britain have helped them to restrain costs? What aspects have kept costs high?

7. How has the rise of market forces affected health care in Great Britain?

8. What aspects of its health care system have enabled China to provide good health at low cost to its people? What factors have led to a worsening of coverage?

9. What are the similarities and differences between health care in Mexico and the DRC?

CRITICAL THINKING QUESTIONS

1. Compare and contrast the health care system in the United States with the system in one other country. Explain which system you would prefer.

2. Do people have a right to health care? To primary care? To secondary care? To tertiary care? Do children? Adults? Elderly people? People with disabilities? Unemployed drug addicts? Illegal aliens?

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Health Care Settings and

Technologies

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LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand how hospitals, nursing homes, and hospices have evolved. ● Critique the ways that hospital, nursing home, and hospice care are now

structured. ● Assess the benefits and burdens of caring for ill and disabled individuals at

home. ● Analyze the nature and consequences of health care technologies.

Stacy Trebing yanked off the yellow paper hospital gown that covered her shorts and T-shirt, unhooked the surgical mask from behind her ears, and stuffed both items into the garbage pail in the entryway of her daughter’s hospital room. She’d been at her three-year-old daughter’s bedside practically every minute of the past 10 days.

She needed a breather. The next morning, Stacy’s daughter would have a bone marrow transplant,

a medical procedure that would either cure her or kill her. Every minute since Katie’s birth had been leading to this day. Everything Stacy and her husband, Steve, had done, every decision they’d made, had propelled them here—including the most controversial of their choices: to [use in-vitro fertilization to] create a new human being they had selected as an embryo because he genetically matched a critical portion of his sister’s DNA.

That one-year-old baby would be brought into the hospital the following morning to donate the life-changing bone marrow that was the only chance to heal his sister [who had an extremely rare genetic condition that would otherwise require painful, debilitating treatments and that would still likely kill her by her 40s]. Christopher Trebing was born to be a member of the Trebing family [to parents who had wanted another child regardless], but he was also born with a job to do. He would be put under general anesthesia while a doctor inserted needles repeatedly into his hips and siphoned the tissue that could repair Katie’s ailing body.

Katie and Christopher wouldn’t see each other on what the doctors called Day Zero. Katie would stay in isolation in her room, and Christopher’s marrow would be transported in an IV bag and dripped into her. Doctors told Stacy that because it had been so difficult to get an IV into Christopher’s veins during his preoperative blood testing, they might have to go through a more dangerous route, a vein in his leg, to administer anesthesia. Stacy feared for both children.

As she sat, Stacy wasn’t dwelling on the many ethical issues that troubled the bioethicists and critics who thought no baby should be conceived with a purpose: Who would protect the medical interests of what was referred to as a “savior sibling” when his parents were so focused on curing the older child? How would

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such a baby feel when he grew up and learned he had been brought into the family with a responsibility? Who would object if the child was later called upon to donate something more radical than bone marrow to help the sibling—a kidney perhaps?

As his mom, Stacy had more personal concerns: How would she feel if Christopher’s much-anticipated bone marrow donation didn’t work? What if Katie’s body rejected Christopher’s marrow and Katie died? Would it change how Stacy felt about Christopher? Would it make it hard to be his mother? If anything ever happened to Katie, Stacy asked herself uneasily, would I be resentful toward him? (Whitehouse, 2010:ix–xi)

In the end, the Trebing’s gamble paid off, and both children emerged happy and healthy. Their story vividly illustrates the nature of modern health care technologies and the many questions those technologies raise, including questions about which technologies should be developed, who should receive them, and what are the financial and other costs of these technologies to both individuals and society in general. This chapter offers a sociological analysis of health technologies and of four key settings in which those technologies are offered: hospitals, nursing homes, hospices, and family homes. We begin with a discussion of hospitals.

THE HOSPITAL

The hospital as we know it is a modern invention. Before the 20th century, almost all Americans, whether rich or poor, received their health care at home from friends, relatives, and assorted health care providers. Because these providers used only a few small and portable tools, hospitals were unnecessary.

Some form of institution, however, was needed for those Americans who lacked friends or relatives to provide care at home or the means to purchase such care. For these individuals, the only option was the almshouse. Here they—along with orphans, criminals, people with disabilities, people with mental illnesses, and other public wards—received essentially custodial care. Conditions in almshouses generally were appalling. Inmates often had to share beds or sleep on the floor, and rats often outnumbered humans. Hunger was common, and blankets and clothing scarce. These conditions, coupled with the lack of basic sanitation, made alms- houses ideal breeding grounds for disease (Rosenberg, 1987:31–32).

THE PREMODERN HOSPITAL

Wealthy Americans considered almshouse conditions quite acceptable for those they regarded as lazy, insolent, alcoholic, promiscuous, or incurable (categories they believed included all nonwhites). By the end of the 18th century, however,

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wealthy Americans began to view these conditions as unacceptable for those they considered the “deserving” poor—the respectable widow, the worker disabled by an accident, or the sailor struck by illness far from home. With such individuals in mind, philanthropists decided to develop a new form of institution, the hospital, devoted to inpatient care of the “deserving” sick—so long as they didn’t suffer from chronic, contagious, or mental illnesses (Rosenberg, 1987:19–20). These hos- pitals were nonprofit and became known as voluntary hospitals because they relied heavily on unpaid (volunteer) charity work.

Although hospitals offered better conditions than did almshouses, they remained chaotic and dirty places. According to historian Charles Rosenberg:

Nurses were often absent from assigned wards and servants insolent or evasive. Chamber pots [used for urinating and defecating] remained unemptied for hours under wooden bedsteads, and mattresses were still made of coarse straw packed tightly inside rough ticking. Vermin continued to be almost a condition of life among the poor and working people who populated the hospital’s beds, and lice, bedbugs, flies, and even rats were tenacious realities of hospital life. (1987:287)

These conditions, plus the severe limitations of contemporary medicine, kept mortality rates high and taught the public to associate hospitals with death rather than treatment. To make matters even worse, hospitals functioned as total in- stitutions (described in Chapter 7) in which patients traded individual rights for health care (Rosenberg, 1987:34–46). Hospital rules regulated patients’ ev- ery hour, even mandating work schedules for those who were physically capable. Patients who didn’t follow the rules could find themselves thrown into punish- ment cells or frigid showers.

Beginnings of the Modern Hospital

Given the rigors of hospital life, the stigma of charity that accompanied hospi- tal care, and the popular association of hospitals with death, early 19th-century Americans entered hospitals only as a last resort (Rosenberg, 1987:98–99). During the Civil War, however, the need to care for sick and wounded soldiers led to significant improvements in hospital organization and care, at least for the bet- ter-financed Union Army. These changes demonstrated that hospitals need not be either deadly or dehumanizing.

After the war, widespread adoption of new ideas about the dangers of germs and the importance of cleanliness helped make hospitals safer and more pleasant. So, too, did technological changes such as the development of disposable gauze and cheaper linens, which made cleanliness feasible (Rosenberg, 1987: 122–141). Concurrently, population increases (through births and immigration), the movement from farms to overcrowded cities, and the rise of dangerous factories led to a rise in both contagious diseases and serious accidents. These changes increased patient demand for hospitals. Meanwhile, doctors also began pushing for hospital construction to gain access to new medical technologies and sterile surgical theaters (Rosenberg, 1987:149).

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Yet affluent Americans remained generally unwilling to tolerate the condi- tions on even the cleanest hospital wards. As a result, and to compete with the for-profit, private hospitals that began appearing during the second half of the 19th century, voluntary hospitals developed a class-based system of services (Rosenberg, 1987:293–294). Those who could pay for private accommodations received better heating and furnishings, exemption from many hospital rules, and privileges such as more anesthesia during operations. Thus voluntary hospitals be- gan to lose their ethos of service and became increasingly similar to their for-profit competitors (Stevens, 1989:112).

The Rise of the Modern Hospital

By the early 20th century, the hospital as we now know it had become an im- portant American institution and a major site for medical education and research. Between 1873 and 1923, the number of hospitals increased from 178 to almost 5000 (Rosenberg, 1987:341). These new hospitals also included public hospitals. Such hospitals were established to provide services to those groups—people with mental illnesses, people with chronic illnesses, and the “undeserving poor”—that voluntary hospitals considered to be unworthy and for-profit hospitals considered to be money losers. However, African Americans still could obtain care only in a few segregated, poorly staffed, and poorly funded wards and hospitals; in municipal hospitals where medical students and residents could learn skills by practicing on African American patients; and sometimes in other hospitals for emergency care (Stevens, 1989:137).

By this time, surgical admissions to hospitals far surpassed medical admissions (Rosenberg, 1987:150). Most patients went to a hospital to have their tonsils, adenoids, or appendixes removed; their babies delivered; or their injuries treated (Stevens, 1989:106). The emphasis on technology as a defining aspect of mod- ern hospitals further reinforced hospitals’ tendency to focus on the care of acute illness rather than chronic illness.

The next major change in hospital care in the United States came in 1965 when the federal government implemented Medicaid and Medicare. These health insurance plans dramatically increased the profits available to hospitals. This in turn led to both a rise in for-profit hospitals and increasing mergers of hospitals into ever-larger for-profit and voluntary hospital chains (such as Humana and Sisters of Charity, respectively).

As hospital profits grew, so did costs to the federal government via Medicaid and Medicare. As a result, the government for the first time developed a vested in- terest in controlling hospital costs. Ironically, the resulting price-control programs (described in Chapter 8) such as diagnosis-related groups (DRGs) pressured voluntary hospitals (which remain the core of the hospital system) to focus more on the bottom line and thus to act more like for-profit hospitals (Stevens, 1989:305).

Hospitals Today

Since the turn of the new century, additional cost-containment programs at the state and federal level have especially squeezed funding for public hospitals. Under

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any circumstances, these hospitals have trouble making ends meet because so many of their patients can’t afford to pay for their care. To cover that care, public hospi- tals rely on funding from state and local governments. This funding, however, has declined substantially in recent years, forcing public hospitals to cut staff, reduce services, or close altogether. The same pressures have led to the closure of 85 rural hospitals of all types between 2010 and 2018, most of which served predominantly poor populations (Healy, 2018).

Financial concerns—and desires—have also affected the mix of services of- fered by voluntary and for-profit hospitals. Rather than fighting managed care insurers over which treatments and services the insurers will cover, these hos- pitals now increasingly offer extra services that patients are willing to pay for out of pocket such as yoga, meditation, and massage (Abelson and Brown, 2002; Rosenthal, 2017). Meanwhile, the search for profits has encouraged these hospitals to offer new, technologically intensive treatments and tests even if evidence of their benefits is weak and other nearby hospitals already offer them. The result has been a proliferation of expensive technologies such as magnetic resonance imaging machines, intensive care units, and open-heart surgical suites. Conversely, many hospitals have closed, shrunk, or outsourced money-losing units such as obstetrics wards, emergency departments, and psychiatric units (Rosenthal, 2017). Finally, an astounding number of hospitals have merged in recent years. By so doing, they have essentially created monopolies that allow them to set whatever prices they want for services because there is little or no competition (Rosenthal, 2017).

At the same time, as voluntary and for-profit hospitals have shifted toward providing more intensive care for middle-class Americans, public hospitals have increasingly become primary care providers for the poor. Patients who have neither health insurance nor money to pay for care sometimes turn to hospital outpatient clinics and emergency departments not only for treatment of acute problems such as gunshot wounds but also for chronic problems such as backaches.

The Hospital–Patient Experience

Although hospitals no longer terrify and endanger patients as they did in the 19th century, a hospital stay still can be alienating and frightening. The bureaucratic nature and large size of modern hospitals coupled with the highly technological nature of hospital care often means that the patient as an individual person, rather than just a diseased body, gets lost.

The reasons behind this are obvious and to some extent unavoidable. First, increasingly, patients enter hospitals needing emergency care. Often health care workers must respond immediately to their needs and have no time to talk with them to ascertain their preferences—which many are physically incapable of ex- pressing in any case. Second, the highly technical nature of hospital care encour- ages staff to focus on the machines and the data these machines produce rather than on the patient as a whole person. In the modern obstetric ward, for example, workers often focus much of their attention on the electronic fetal monitor rather than on the laboring woman (Simonds, Rothman, and Norman, 2007). Third, and as we will see in Chapter 11, medical training encourages doctors to focus

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on biological issues much more than on patients’ psychological or social needs. Fourth, as large institutions necessarily concerned with costs and profits, hospitals must rely on routines and schedules, with little leeway for individual needs or de- sires. Hence the common stories of nurses awakening patients from needed sleep to take their temperature or blood pressure.

The Shift away from Hospitals

Increasingly, changes in financing have moved care away from hospitals. Because insurers (including Medicare under the DRG system) typically pay hospitals only preset amounts for inpatient surgery but will negotiate with hospitals over pay- ment for outpatient surgery (i.e., surgery given without formally admitting the patient to the hospital), many hospitals have opened outpatient surgical clinics, which they use whenever feasible.

Similarly, insurers increasingly are reducing their costs by raising reimburse- ment for outpatient care and lowering it for (more expensive) inpatient care, a trend that the ACA further encourages. As a result, many hospitals have added outpatient medical centers as well as surgical centers. For example, between 2000 and 2014, San Diego’s Scripps Health system closed one hospital and added 20 outpatient care sites (Vesely, 2014).

NURSING HOMES

From the start, American hospitals focused on caring for acutely ill persons and assumed that families would care for chronically ill persons. During the course of the 20th century, however, average life expectancy increased; families grew smaller, more geographically dispersed, and less stable; and women less often worked at home. As a result, more and more Americans needed to seek long-term care from strangers, and nursing homes—facilities that primarily provide nursing and cus- todial care to groups of individuals over a long period of time—became part of the American landscape.

The number of nursing homes has more than tripled since 1980. Currently, there are around 16,000 skilled nursing homes in the United States. Two-thirds of homes are run for profit, a sharp rise from earlier years (Centers for Medicare and Medicaid Services, 2016).

Gender, Age, Ethnicity, Class, and Nursing Home Usage

Around 1.4 million Americans currently live in nursing homes (Centers for Medi- care and Medicaid Services, 2016). Some groups, however, are more likely than others to find themselves in a nursing home.

Most strikingly, women are far more likely than men to become nursing home residents. Indeed, women now constitute some two-thirds of residents, partly because women more often live long enough to become enfeebled by age

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and partly because they more often survive their spouses, leaving no one to care for them if they need help.

It is not surprising that older people are far more likely than others to live in nursing homes, and that residents overwhelmingly are older than age 75. However, the numbers of nursing home residents younger than age 65—indeed, younger than age 30—has grown significantly in the past decade because of the rise in diabetes and in gang violence, among other factors (Persson and Ostwald, 2009). Many young people stay in nursing homes only temporarily while recuperating from a serious illness or accident, but others stay for years. Still others find themselves in nursing homes because they have a mental illness or disability and have no one who can help them with basic daily tasks (such as preparing food or dressing themselves).

Regardless of why young people find themselves in nursing homes, their lives can be grim and isolating: Few have interests in common with their elderly co- residents, and many are in nursing homes in part because they have limited contact with their families (Persson and Ostwald, 2009).

Historically, nursing homes residents overwhelmingly were white, but this is shifting as the composition of the U.S. population changes. Unfortunately, African Americans and Hispanics far more often find themselves in lower-quality nursing homes, primarily because of their lower incomes (Fennell et al., 2010; Smith et al., 2007). The same is undoubtedly true for poorer white Americans, although data on this are unavailable.

It is important to note that nursing home residents these days are consider- ably sicker on average than residents were 20 years ago. This change stems from the economic incentives built into DRGs, which have encouraged hospitals to discharge patients “sicker and quicker”—physically stable but still ill—once their bills and lengths of stay exceed the limits set by Medicare. Those who can’t care for themselves at home often are discharged directly to nursing homes.

Financing Nursing Home Care

Currently, nursing home care costs around $82,000 per year for those who pay out of pocket (Genworth, 2017). Few Americans can afford these costs. Nor can most afford insurance coverage for nursing home care, which typically is extremely expensive. As a result, most residents rely on Medicare to pay their bills—at least initially. However, Medicare pays only for skilled nursing care and at most for the first 150 days. As a result, most individuals who need only custodial care or need more than 150 days of care must turn to Medicaid to pay their bills. To be eligible for Medicaid, however, they must first sell all of their assets (minus their houses if they are married) and spend all of their savings (minus the cost of burial expenses and minimum living expenses for their spouses). Thus, long-term nursing homes residents (and their spouses) usually end up impoverished. Moreover, Medicaid reimbursement for nursing homes is often less than the homes’ usual charges. As a result, nursing homes actively work to solicit Medicare patients and avoid Med- icaid patients. In addition, to free up beds for Medicare patients, nursing homes often move Medicaid patients to less desirable areas (such as dementia wards) or discharge them to lower-quality nursing homes (Rodriguez, 2014).

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Working in Nursing Homes

Nursing home care is extremely labor intensive. To provide this care, nursing homes rely almost solely on nursing assistants (who often have no training) augmented by licensed practical nurses (who have completed approximately one year of classroom and clinical training).

Nationally, nursing assistants (half of whom work in nursing homes and one-quarter in hospitals) form one of the largest and fastest-growing health care occupations (Bureau of Labor Statistics, 2017). Almost all are women, and most are nonwhite. Many come from Africa, Asia, or Latin America and are not native English speakers. As a result, as a group they have little ability to fight for better working conditions. Currently, nursing assistants earn a median income of $27,000 (Bureau of Labor Statistics, 2017).

To understand the life of nursing home residents and the nursing assistants who care for them, sociologist Timothy Diamond (1992) became certified as a nursing assistant and worked for several years in a variety of nursing homes. He soon concluded that the core of working as a nursing assistant is caregiving but that those who train nursing assistants don’t recognize this basic fact. Instead, his instructors taught him to recite biological and anatomical terms, measure vital signs, and perform simple medical procedures. Instructors divorced these skills from any social context or any sense that their patients were people rather than inanimate objects. Moreover, the skills Diamond most needed were never taught, such as exactly how do you clean an adult who has soiled a diaper in a manner that preserves the individual’s sense of dignity? Only by labeling this caregiving as mere physical labor could those who hire nursing assistants label them “unskilled” and treat them so poorly.

Life in Nursing Homes

Diamond’s research underlines how the fates of nursing assistants and nursing home residents intertwine and how even in the best nursing homes, the econom- ics of a profit-driven system produce difficult conditions for both. According to Diamond, within nursing homes

caregiving becomes something that is bought and sold. This process involves both ownership and the construction of goods and services that can be measured and priced so that a bottom line can be brought into being. It entails the enforcement of certain power relations and means of production so that those who live in nursing homes and those who tend to them can be made into commodities and cost accountable units. (1992:172)

In this process of commodification, or turning people into commodities, “Mrs. Walsh in Bed 3” becomes simply “Bed 3.” To keep down the price of this “commodity,” only the most expensive homes provide private rooms or separate areas for residents who are dying, smelly, or psychologically disturbed. Privacy, then, also becomes a commodity that few residents can afford.

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Nursing assistants, meanwhile, become budgeted expenses that homes try to keep to an absolute minimum. This is not hard to do because federal standards require far less staff than is necessary to provide adequate care (Rodriguez, 2014). Yet almost no homes meet even those low standards (Rau, 2018). As a result, nurs- ing home residents are unnecessarily placed at risk for numerous health problems. For example, residents can experience malnutrition when there are not enough assistants to cut up their food, help them eat, and encourage them to take more than a few bites. Similarly, residents may be drugged, strapped to chairs, kept on a strictly regimented schedule, or left in a single central room during the day so they can be supervised by only a few assistants. One study found that 71% of new residents received psychiatric drugs even though most had neither been diagnosed with a psychiatric problem nor received such drugs before admission (Molinari et al., 2010).

Although all these problems also can occur in nonprofit nursing homes, a re- view of federal data from all U.S. nursing homes found that both quality of life and quality of care were significantly worse in for-profit homes (Harrington et al., 2001). One reason for this is that within the profit-driven system, managers constantly stress to staff that providing care is less important than documenting care. As a sign proclaimed in one nursing home where Diamond worked, “If it’s not charted, it didn’t happen.” For example, state regulations where Diamond worked required homes to serve residents certain “units of nutrition” each day. Consequently, each day nursing assistants collected cards placed on residents’ food trays that named the foods and their nutritional content. Every few months, state regulators would inspect the cards and certify that the homes met state nutritional requirements. Yet these cards bore little relationship to reality because the appetizing-sounding names given to the foods rarely matched the actual appearance or taste of the food. Nor did the cards note if a resident refused to eat a food because it was cold, tasteless, or too hastily served. Similarly, sanitation regulations required homes to shower residents regularly but did not require that the showers be warm. Nor did they require the homes to hire enough nursing assistants so that residents who used diapers could be cleaned as soon as needed or so that residents could get the help they needed in using the toilet and thus avoid the indignity and discomfort of diapers. Unfortunately, more recent research suggests that low reimbursement rates by Medicare—and especially Medicaid—now encourage nonprofit nursing homes to make similar choices (Rodriguez, 2014).

Ironically, in top-tier nursing homes, the same process of commodification is now leading nursing home owners to encourage nursing assistants to empha- size caring and indeed to think of residents as their kin (Dodson and Zincavage, 2007). By so doing, nursing homes can both charge higher prices for their “family atmosphere” and get more work from assistants for the same low wages. But this “purchased intimacy”—similar to that offered by massage therapists, beauticians, and others—is a one-way transaction: Nursing assistants may treat residents like family, but residents still often sling racist slurs at nonwhite nursing assistants. And even in these “higher-quality” nursing homes, owners rarely allow nursing aides time off to deal with problems in their own families or to grieve when residents they cared about die.

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HOSPICES

Origins of Hospice

Whereas nursing homes emerged to serve the needs for long-term care not met by hospitals, hospices emerged out of growing public recognition that neither of these options provided appropriate care for the dying.

Only in the past few decades has institutional care for the dying become a public issue. At the beginning of the 20th century, few individuals experienced a long period during which they were known to be dying. Instead, most succumbed quickly to illnesses such as pneumonia, influenza, tuberculosis, or acute intestinal infections, dying at home and at relatively young ages. Now, however, most Amer- icans live long enough to die from chronic rather than acute illnesses. In addition, as doctors and scientists have developed techniques for detecting illnesses in their earliest stages, they now more often identify individuals as terminally ill long be- fore death occurs. Thus, dealing with the dying is to some extent a uniquely mod- ern problem and certainly has taken on a uniquely modern aspect.

Although modern medical care has proved lifesaving for many people, its ability to extend life can turn from a blessing to a curse for those who are dying. (“Ethical Debate: A Right to Die?” on p. 232) discusses this issue in more detail.) For various reasons, including legal concerns about restricting care, financial incentives for using highly invasive treatments, and a medical culture (described in the next chapter) that emphasizes technological interventions, thousands of Americans each year receive intensive, painful, and tremendously expensive medical care that offers little hope of restoring quality of life or extending lives (Byock, 2013; Gawande, 2014). In nursing homes, on the other hand, the emphasis on profit making and cost cutting often results in dying persons receiving only minimal and depersonalized custodial care.

This lack of appropriate care for the dying led to the development of the hospice movement. The first modern hospice, St. Christopher’s, was founded in England in 1968 by Dr. Cicely Saunders to address the needs of the dying and to provide an alternative to the alienating and dehumanizing experience of hospi- tal death. The hospice admitted only patients expected to die within six months and offered only palliative care (designed to reduce pain and discomfort) rather than treatment or mechanical life supports. The hospice provided care in both St. Christopher’s and patients’ homes.

The first American hospice, which closely resembled St. Christopher’s, opened in 1974 in New Haven, Connecticut. Other hospices soon followed, emerging from grassroots organizations of religious workers, health care workers, and community ac- tivists seeking alternatives to hospitals and nursing homes. Public support for hospices was so immediate and so great that in 1982, only eight years after the first American hospice opened, Congress approved covering hospice care under Medicare.

Modern Hospices

The U.S. hospice movement has proved enormously successful, growing from one hospice in 1974 to around 6100 hospices serving some 1.6 million clients annually

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(National Hospice and Palliative Care Organization, 2015). With that success, however, have come changes. Whereas the original hospices were independent, freestanding institutions, these days most hospice care is received in homes and nursing homes. In addition, the original hospices were nonprofit organizations that were primarily staffed by volunteers and emphasized individualized care and patient participation. Now that hospices are primarily funded by insurers, they have had to reconfigure their staffing and practices to meet standards for care based on hospital protocols. Finally, around two-thirds of all hospices are now run on a for-profit basis (National Hospice and Palliative Care Organization, 2015). For- profit hospices are less likely than other hospices to provide care at home and are more likely to declare clients ineligible for services even as they get closer to death, apparently to reduce their costs and increase their profits (Aldridge et al., 2014).

A Right to Die?

In 1983, 26-year-old Elizabeth Bouvia, who lived with almost total paralysis from cerebral palsy and near-constant pain from arthritis, presented herself for admission to Riverside General Hospital. In years past, and despite her physical problems, Bouvia had earned a degree in social work, married, and lived independently. However, after her efforts to have children failed, her husband left her, and the state stopped paying for her special transportation needs, she lost interest in living. Her purpose in coming to the hospital, she told the hospital staff soon after her admission, was to obtain basic nursing care and pain-killing medication while starving herself to death, cutting short what might otherwise have been a normal life span. The hospital’s doctors took her case to court and won the right to force-feed her. The court concluded that although Bouvia did have the right to commit suicide, she did not have the right to force health care workers to engage in passive euthanasia by allowing her to die through their inaction.

In 1990, Janet Adkins, 54 years old and living with Alzheimer’s disease, killed herself with the assistance of Dr. Jack Kevorkian—a process known as physician-assisted death. Kevorkian had designed a machine that allowed people with severe disabilities to give themselves a fatal dose of sodium pentothal and potassium in the privacy and freedom of their homes. Over the next decade, Kevorkian helped more than 100 people kill themselves without facing any legal penalties. In 1999, however, he was convicted of second-degree homicide and sentenced to 10 years to 25 years in prison for committing active voluntary euthanasia: taking the steps needed to end the life of someone who has requested that he or she be killed. In Adkins’s case, Kevorkian administered a lethal injection to rather than have Adkins administer the dose herself. Kevorkian was released from prison in 2007 on the condition that he not assist in any further deaths.

In the Netherlands, meanwhile, doctors legally can practice active voluntary euthanasia for patients who request it in writing and who are mentally competent, incurably ill, and suffering intolerable and constant pain. Similar laws have been passed recently in a few U.S. states (Warraich, 2017).

Those who support a “right to die” argue that competent adults have the right to make decisions for themselves, including the ultimate decision of when to die. They argue that death sometimes can be a rational choice and that it’s cruel to force individuals to suffer extreme physical or mental anguish (Seale, 2010).

ETHICAL DEBATE

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For all of these reasons, hospice care is now more cost oriented and less individu- alized or patient centered than it was originally.

Use of Hospice

Around one-third of those who die in the United States use hospice services, for a median of 17 days (National Hospice and Palliative Care Organization, 2015). Women and whites are especially likely to use hospice care. In addition, most hos- pice clients are older than age 65 and rely on Medicare to pay the costs (National Hospice and Palliative Care Organization, 2015).

Because Medicare only pays for hospice care for six months, hospices lose money if their clients survive beyond that time period. As a result, hospices

If we accept that death can be a rational choice, then harder questions follow. Why is it rational only if one’s condition is terminal? Doesn’t it make even more sense to end the life of someone like Elizabeth Bouvia, whose agonies may continue for another 50 years, than to end the life of someone who will die soon regardless? Why should this choice be forbidden to individuals simply because they can’t—physically or emotionally—carry it out themselves? And why should we allow individuals to choose death only through passive euthanasia, leaving them to languish in pain while awaiting death when they could be killed quickly and painlessly?

Opponents of this view argue that the duty to preserve life overrides any other values and that euthanasia is merely a nice word for suicide or murder. They question whether Elizabeth Bouvia would have wanted to die if she still had the resources she needed to live independently, and they wonder whether euthanasia gives society a way to avoid responsibility for relieving the burdens imposed by illness and disability.

In sum, the use of euthanasia, whether active or passive, raises numerous difficult questions: What are the consequences of effectively declaring it reasonable for disabled people to choose death? What pressures does this place on individuals to end their own lives rather than burdening others? What responsibilities does this remove from society to make these individuals’ lives less burdensome? Finally, given that social factors such as age, gender, and social class affect our perceptions of individuals’ worth, how do we ensure that society won’t more willingly grant a right to die to women, minorities, or other socially disvalued groups?

Sociological Questions

1. What social views and values about medicine, society, and the body are reflected in the debate over a right to die? Whose views are these?

2. Which social groups are in conflict over this issue? Whose interests do the different sides of this issue serve?

3. Which of these groups has more power to enforce its view? What kinds of power do they have?

4. What are the intended consequences of recognizing a right to die? What are the potential unintended social, economic, political, and health consequences of doing so?

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disproportionately choose to serve individuals with cancer because life expec- tancies for such individuals can be predicted with some accuracy. However, use of hospices by individuals with other diagnoses (especially dementia) is growing (National Hospice and Palliative Care Organization, 2015).

Outcomes of Hospice Care

Research suggests that hospice care saves Medicare more than $2000 per person and that even more could be saved if individuals entered hospice care sooner (Taylor et al., 2007). To understand the full economic impact of hospice care, however, we must take into account that around 40% of hospice users now die in their homes (National Hospice and Palliative Care Organization, 2015). In these circumstances, family members provide most care. To do so, they often must take time off from work or drop out of the labor market altogether. Consequently, hospice care might not reduce the costs of caring as much as shift the cost from hospitals and insurers to families.

The health benefits of hospice care are clearer. One study using a large-scale random sample of terminally ill Medicare recipients found that hospice clients survive an average of one month longer than those who receive ordinary medical care instead (Connor et al., 2007). Another study randomly assigned patients re- cently diagnosed with a terminal illness to either hospice or regular medical care and found that the hospice patients reported a higher quality of life, experienced less depression, and survived almost three months longer than those who continued with medical care (Temel et al., 2010). These individuals may have benefited both from the supportive care of hospice and from avoiding the traumatic surgeries and chemotherapies typically given to terminally ill patients.

HOME CARE

As the discussion of hospices suggested, most individuals who experience chronic or acute health problems—whether children, working-age adults, or elderly and whether their problems are physical or mental—receive most of their care at home. This is even truer now than in the recent past because of technical, demographic, and policy changes. Because of technological advances, babies born prematurely or with birth defects and persons who have experienced severe trauma are increas- ingly likely to survive, although often with severe disabilities that require lifelong assistance. Much of this care is now given by family members in the home. In addition, technological advances also have made it possible for families to provide treatments at home that previously were available only in hospitals such as chemo- therapy and kidney dialysis.

At the same time, the rise in the numbers of frail elderly, many of whom have both multiple physical problems and cognitive impairments, has increased the number receiving care at home. In addition, the movement begun in the 1960s (as described in Chapters 6 and 7) to deinstitutionalize people with dis- abilities and mental illnesses, combined with the lack of community supports for

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such individuals after deinstitutionalization, have shifted much of the burden of care from state institutions to the home. Finally, as described previously, policy changes have encouraged hospitals to discharge patients to their homes “sicker and quicker,” in essence replacing paid hospital workers with unpaid family caregivers.

Because of limited public or private insurance coverage for home care, most who need long-term supportive care receive services only from family members and, less often, friends. Research suggests that home care has little impact on the overall costs of care or the mental or physical health of those receiving care but can produce small improvements in individuals’ satisfaction with life (Arno, Bonuck, and Padgug, 1995; Weissert, 1991).

The Nature of Family Caregiving

Statistics as of 2018 indicate that around 45 million Americans regularly provide care for elderly, ill, or disabled relatives or friends (National Alliance for Caregiv- ing and AARP, 2015). Around two-thirds of these caregivers are women. Ethnic minorities and poorer persons also are more likely to become caregivers, probably because these groups experience higher rates of illness and disability and have less access to formal services.

Those who care for the health needs of family members typically do so out of love and often reap substantial psychological rewards. Nevertheless, caregiving by family members should not be romanticized, nor should the financial, physical, social, or psychological costs of caregiving be underestimated (Arras and Dubler, 1995; National Alliance for Caregiving and AARP, 2015).

The financial costs of caregiving are substantial. The demands of caregiving force many family members to shift to part-time work or even abandon paid employment. In addition, caregivers must purchase, often out of pocket, both ex- pensive drugs and technologies and many everyday items such as diapers and ban- dages. In addition, caregivers typically are responsible for purchasing a variety of services and therapies from a range of companies and health care workers.

The physical costs also can be high. Caregivers are often exhausted or even injured by repeated, strenuous tasks such as lifting a disabled person into bed. The time burdens of caregiving also can become physically draining. The typical care- giver spends 24 hours per week on caregiving, has been doing so for around four years, and holds at least a part-time job as well (National Alliance for Caregiving and AARP, 2015). Moreover, many people are simultaneously responsible for more than one relative such as a child with a disability and a parent with Alzheimer’s disease. It is no surprise that the more time caregivers spend in providing care, the greater the toll on their health (National Alliance for Caregiving and AARP, 2015).

Taken together, the financial and physical burdens of caregiving often leave individuals with little time, energy, or money for social relationships. Caregivers often report that their relationships with both family and friends have suffered be- cause of their responsibilities (National Alliance for Caregiving and AARP, 2015). For example, a mother who spends hours each day caring for an ill child might regret that she has so little time for her other children, and those children might resent the attention given to their ill sibling. Problems are particularly acute when

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the person receiving care is mentally ill and throws family routines into chaos, embarrasses other family members, or physically threatens their safety (Reinhard and Horwitz, 1996; Tessler and Gamache, 1994).

Family life also can suffer when caregiving requires the use of high tech- nology within the home. Slightly more than half of caregivers report providing medical or nursing care such as cleaning feeding tubes, caring for colostomies, and giving injections (National Alliance for Caregiving and AARP, 2015). John D. Arras and Nancy Neveloff Dubler suggest that this invasion of the home by high- tech medical procedures, mechanisms, and supporting personnel exerts a cost in terms of important values associated with the notion of home. As they explain:

How can someone be truly “at home,” truly at ease, for example, when his or her living room has been transformed into a miniature intensive care unit?. . . Rooms occupied by the paraphernalia of high-tech medicine may cease to be what they once were in the minds of their occupants; familiar and comforting family rituals, such as holiday meals, may lose their charm when centered around a mammoth Flexicare bed; and much of the privacy and intimacy of ordinary family life may be sacrificed to the institutional culture that trails in the wake of high-tech medicine. (1995:3)

Finally, caregiving brings with it numerous psychological costs, especially for the 50% of caregivers who report that they had no choice about taking on this role (National Alliance for Caregiving and AARP, 2015). Caregivers can easily become depressed when their efforts can’t stop or even slow the disease process. This is especially true when caregivers must routinely inflict painful treatments on their charges or when the burdens of caregiving are unceasing, as when a parent must suction the lungs of a child with cystic fibrosis hour after hour, day after day, to keep the child from dying. Moreover, as this example suggests, caregivers also often bear the enormous psychological burden of being directly responsible for another person’s life. In fact, family caregivers are now expected to manage in the home—often with little training or technical support—technology considered too complex for licensed practical nurses to manage in hospitals. Finally, caregivers of persons younger than themselves face anxieties about what will happen to their charges if the caregivers die first.

Easing the Burdens of Caregiving

The problems faced by family caregivers have led to the development of new organizations, new organizational structures, and a new occupation to ease the burdens of caregiving. Two major organizations—the National Alliance for the Mentally Ill (NAMI) and the National Alliance for Caregiving (NAC)—are now devoted to family caregiving. Both organizations work to increase assistance to family caregivers and improve access to community-based care, and NAMI also fights to decrease the stigma of severe mental illness.

Both respite care and family leave programs also were developed to ease the burdens of caregivers. The term respite care refers to any system designed to give

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caregivers a break from their otherwise unrelenting responsibilities, including paid aides who provide care in the home for a few hours, daycare centers for elderly and disabled adults, and nursing homes that accept clients for brief stays. Unfor- tunately, only California and Pennsylvania fund respite care programs. In all other states, respite care is expensive and difficult to find; only 15% of those included in the NAC and AARP (2015) survey had ever used respite care. Minimal data are available on the quality of these services (Kitchener and Harrington, 2004).

Similarly, although federal law gives employees the right to as many as 12 weeks of unpaid leave from work yearly to care for family members, few can afford to take unpaid leaves. In addition, the law does not apply to part-time work- ers, temporary workers, or employees of small firms. The law is also problematic because it reinforces the idea that caring for ill and disabled persons is the respon- sibility of the family—which, in practice, usually means women relatives—rather than the responsibility of society as a whole (Abel, 2000).

Finally, those who provide care to relatives or friends may turn for assistance to paid caregivers with bathing, dressing, light housework, and other basic tasks. Most paid home care is provided by home health aides, who typically have no formal training, or registered nurses, who have received at least two years of nursing training and passed national licensure requirements. Aides are over- whelmingly minorities and women, and they are highly likely to be immigrants. Few receive any job benefits, and most receive only minimum wage. Because the growth in paid home health care is so new, little more is known regarding these workers or their work.

HEALTH CARE TECHNOLOGIES

Doctors and other healers have always used technologies in their work. Two hun- dred years ago, doctors used knives to cut veins and “bleed” patients of their ill- nesses and used strips of cloth to bandage the wounds afterward. One hundred years ago, doctors used mercury compounds and electricity in attempting to cure patients of masturbation or syphilis. In modern medicine, health care technology includes everything from Band-Aids to computerized patient record systems to heart–lung machines.

The Nature of Technology

Technology refers to any human-made object used to perform a task. In addi- tion, the term is often used to describe processes that involve such objects. For example, the term technology can refer to both the overall process of kidney dialysis and the equipment used in that process.

Although we often talk about technology as if it is inherently either good or bad—“technology has made our lives easier” or “technology has depersonalized medical care”—the reality is more complex (Heath, Luff, and Svensson, 2003; Timmermans and Berg, 2003b). The nature of a technology does determine the range of ways it might be used, but whether it is harmful, helpful, or both depends

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on who uses it and in which ways as “Contemporary Issues: Technology, Terror- ism, and Public Health” illustrates. Electricity is helpful when used by doctors to stimulate muscle healing and harmful when used by doctors who are poorly edu- cated or who work as torturers in dictatorships. Fetal monitors can depersonalize childbirth when nurses stare at the screens rather than pay attention to the preg- nant woman. But ultrasound imaging of fetuses can personalize pregnancy when fathers literally visualize their future children as real for the first time. In addition, such technologies can create a setting in which fathers, mothers, and health care workers can discuss the emotional aspects of pregnancy and child rearing.

Similarly, we often talk about technology as if it is either a blank slate that lacks any inherent nature or a force outside of human control. Again, the reality is more complex. For example, doctors and hospitals now face considerable pressure to collect data on patients, using computerized medical databases in hopes that doing so will help identify and thus reduce medical errors (Timmermans and Berg, 2003a). Because these databases prompt doctors to ask patients a specific set of questions in a specific sequence, they implicitly encourage doctors to focus only on certain questions and to organize the answers they receive in certain ways. At the same time, doctors quickly learn to regain some control over the databases through how they ask their questions and record the answers. Similarly, although doctors who use these databases may press patients to answer specific questions, patients can assert control by instead addressing a different set of issues (Timmer- mans and Berg, 2003a).

For these reasons, we need to understand not only the nature of a given technology but also the cultural system that determines how a technology will be

CONTEMPORARY ISSUES

Technology, Terrorism, and Public Health

Since the events of 9/11, it has been hard to ignore the risks that terrorism can pose to nations and to public health—and the ways in which beneficial technologies can be used for deadly purposes. We now recognize that genetic technologies can be used to increase crop yields or wipe out crops and to create safe vaccinations or increase the deadliness of viruses. Similarly, our sanitary water system, which for generations has protected millions, could be poisoned by terrorists and spread deadly disease, while attacks on nuclear power plants could spew nuclear radiation.

Obviously governments need to invest in security to protect against these and other terrorist threats. But no security system is foolproof. As a result, it is also crucial to invest in public health systems (Levy and Sidel, 2007). Among other things, our health systems need to stockpile antibiotics, antiviral drugs, antitoxins, vaccinations, and other essential drugs. We also need to invest in epidemiological surveillance: strengthening the systems we use to identify new diseases and epidemics from the start so they can be attacked quickly. In the United States, the Centers for Disease Control and Prevention (CDC) has primary responsibility for these activities, as do similar units in each state (Centers for Disease Control and Prevention, 2018). Unfortunately, many political leaders are now focused more on lowering taxes than on bolstering government services, no matter how vital; the CDC’s budget was slashed in 2018, and may see further cuts in future (Newkirk, 2018).

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used, by whom, and for what purposes. In addition, we must study not only how society and social actors shape the use of technology but also how technology shapes society and social actors.

In this section, we look at how technologies develop and gain acceptance. We also consider how different groups within the health care world interact with technology—and with each other.

The Social Construction of Technology

In the same way that we talk about the social construction of illness, we can talk about the social construction of technology: the process through which groups decide which potential technologies should be pursued and which should be ad- opted. This concept in turn leads us to question who promotes and who benefits from the social construction of any given technology.

Like the social construction of illness, the social construction of technology is a political process that reflects the needs, desires, and relative power of various so- cial groups. These groups can include manufacturers, physicians, the government, and consumers. As a result, harmful technologies are sometimes developed and adopted, and needed technologies sometimes are not.

The history of cardiopulmonary resuscitation (CPR) offers a fascinating example of the social construction of technology. The purpose of CPR is to restore life to those whose hearts and lungs have stopped working. In earlier times, the very notion of such resuscitation would not have made sense to doctors or the public. Death was consid- ered to be in God’s hands, and dead was dead. But since the rise of modern medicine, doctors have struggled to find ways to restore life to those who die suddenly.

At the same time, doctors have grown increasingly able to understand the slow trajectory of dying associated with cancer. And with the rise of the hospice movement (described earlier in this chapter), both doctors and the public have come to hold as an ideal the “good death” in which an individual comes to terms with his or her dying, makes peace with family and friends, and receives appropri- ate terminal care to minimize physical and emotional suffering.

None of this, however, applies to the sudden—and common—deaths caused by stroke or heart disease. In his award-winning book Sudden Death and the Myth of CPR, sociologist Stefan Timmermans (1999) argues that CPR and associated resuscitation techniques have become part of American medical culture because they appear to offer a “good death” in these circumstances. Innumerable television dramas portray heroic doctors who save apparently dead patients through CPR, and millions of dollars have been spent in teaching the general public to perform CPR and outfitting community emergency response teams and hospital emer- gency rooms with resuscitation equipment (Lidhoo, 2012). Yet CPR almost never succeeds except when healthy individuals drown or are struck by lightning. The typical person who receives CPR has at best a 1% to 3% chance—and probably much less—of surviving, at an estimated cost of $500,000 per survivor. Moreover, “survival” may be brief and may be accompanied by severe neurological damage (Warraich, 2017). As a result, surveys suggest, almost no doctors want CPR per- formed on them if their hearts should stop (Periyakoil et al., 2014).

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Why, then, has CPR become so widely adopted? Timmermans argues that the widespread use of CPR reflects modern Americans’ discomfort with death. The real benefit of CPR, according to Timmermans, is that it “takes some of the suddenness of sudden death away” (1999:110). CPR allows families and friends to believe they have done everything possible by getting their loved ones to treat- ment as fast as possible. It also gives families and friends time to gather and to recognize that death may be imminent, and it gives medical personnel a sense of technical accomplishment as they fight to keep their patients’ bodily organs func- tioning as long as possible. The use of CPR, then, is part of the broader project of death brokering: the process through which medical authorities make deaths explainable, culturally acceptable, and individually meaningful such as through pain management, “death counseling,” or the gradual removal of life supports from dying patients (Timmermans and Berg, 2005). For these reasons and despite all its emotional and financial costs, CPR has become a valued and expected ritual in American culture.

At the same time, adoption of CPR illustrates the economics and politics as well as the cultural forces that underlie the social construction of technology. CPR would not have been so widely adopted if corporations had not had a vested economic interest in promoting it. Nor is it likely that CPR would have become the norm if corporations had been required to demonstrate its effectiveness before selling it. In fact, however, there are almost no legal requirements for manufactur- ers to demonstrate the safety or effectiveness of technical devices, so they rarely fund such research. As a result, doctors must depend on promotional materials from manufacturers and on their own clinical experiences in deciding whether to use a technology, and patients must rely on doctors’ judgments.

The Technological Imperative

Once a technology enters the mainstream, the technological imperative can make it difficult to avoid. The technological imperative refers to the belief—held by both doctors and consumers—that technology is almost always good, so it is almost always appropriate to use all existing technological interventions, regardless of their cost. This belief is deeply embedded in American culture (and to a lesser extent in Western culture more generally). The belief in intervention (including technological intervention) is also highly stressed in medical culture and training, as Chapter 11 discusses. In addition, and as the history of CPR illustrates, the technological imperative is often reinforced by corporations that have a vested economic interest in selling a particular technology and doctors with a vested interest in offering a technology. Finally, the technological imperative is cemented whenever insurance companies, government regulatory agencies, or medical asso- ciations identify use of a particular technology as the “standard of care” for treating or diagnosing a given illness. In these situations, doctors who don’t use that tech- nology may risk malpractice suits.

Prostate cancer testing offers an excellent example of the technological im- perative. Among men, one almost inevitable consequence of aging is cancer of the prostate, a poorly understood bodily organ that produces chemicals believed

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necessary for reproduction. Most men develop prostate cancer by middle age, and virtually all do so if they live long enough (Kolata, 2005). Few, however, are killed by the disease because it typically grows so slowly that most who have prostate cancer instead die from heart disease, stroke, or some other condition before the cancer can become dangerous (Grob and Horwitz, 2009).

Currently, however, doctors have little ability to identify which men might die from prostate cancer. Instead, doctors can only hope to identify who has prostate cancer. To do so, most doctors routinely test middle-aged male patients at periodic intervals for prostate-specific antigen (PSA), a chemical produced by the prostate. If a patient’s PSA level has increased significantly, doctors perform a biopsy—inserting a needle into the prostate to remove a few cells, which they then check for cancer. Unfortunately, PSA tests are highly inaccurate. Around 30% of those who have can- cer are not identified by the test and so derive no benefit from testing. In addition, around two-thirds of those who are told they have cancer based on test results in fact don’t have it. These individuals too can’t benefit from this inaccurate diagnosis and likely will experience unnecessary emotional trauma, financial costs, and pain- ful procedures because of it. Others are correctly identified as having some cancer cells in their body but would likely have died from heart disease or something else long before the cancer would have caused any health problems; sociologists use the term pseudodisease in cases such as these to refer to harmless conditions that are diagnosed as diseases based on medical tests (Mechanic, 2006).

If a biopsy suggests cancer, doctors usually perform a prostatectomy (i.e., surgical removal of the prostate). The surgery succeeds in removing the cancer in around 80% of cases. Even in these cases, however, the risks of surgery can outweigh the benefits. Between 0.5% and 2% of patients die within a month of surgery, and another 5% experience serious and potentially deadly complications (Wilt et al., 2008). In addition, more than 30% experience serious difficulties in sustaining erections or controlling their urine. Perhaps most important, large studies using random samples and controlling for other variables have found no significant differences in survival rates between men who do and don’t receive treatment (Wilt et al., 2008). In sum, as an editorial published by the New England Journal of Medicine declared, “PSA screening has at best a modest effect on prostate- cancer mortality . . . and comes at the cost of substantial overdiagnosis and overtreatment” (Barry, 2009). The widespread use of PSA screening thus offers a perfect example of the technological imperative.

Technology and the Changing Nature of Health Care

In addition to making certain tests and treatments almost unavoidable, new tech- nologies have dramatically changed the very nature of health care for both health care providers and consumers (Casper and Morrison, 2010; Clarke et al., 2010).

Just a few decades ago, health care was an intensely “hands-on” experience. The doctor would literally lay his (or, rarely, her) hands on the patient, feeling the belly to check for swelling or lumps, thumping the chest to listen for abnormal lung sounds, and so on. A thorough physical examination could take up to an hour of intense questioning and physical probing. As this suggests, medical care

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also relied heavily on listening to the patient’s report of his or her symptoms and concerns. Surgery, too, was bloody, intimate, hands-on work.

These days, doctors give far less attention to patients’ reports of their health and far more attention to results from medical tests. Those tests, meanwhile, are largely performed not by doctors, but by technicians who collect and analyze blood samples, ultrasound readings, CT scans, and other tests. Meanwhile, an increasing proportion of doctors work primarily within the body as surgeons, spending little time interacting with patients. Moreover, surgeons now often use computers to manipulate microscopic surgical tools, further distancing their own bodies from their patients’ bodies.

As this suggests, technology also has led to the rise of a wide range of new health care occupations, shifting many tasks from doctors to these new provid- ers and threatening the balance of power within health care (a topic discussed more fully in the next chapter). At the same time, new technologies (coupled with changes in the structure of insurance and hospital care) increasingly have shifted care onto patients and their families and away from health care providers altogether. As the earlier discussion of family caregiving suggested, many families now have both the opportunity and often the financial need to provide high- technology care in the home—from injecting insulin in children with diabetes to operating ventilator machines for those who can’t breathe on their own.

IMPLICATIONS

In this chapter, we examined three difficulties in the ways we provide care to individuals who have illnesses or disabilities. First, we looked at some of the in- herent contradictions of trying simultaneously to provide care and to make a profit. Health care workers—from medical students to home health aides—who labor long hours in difficult conditions to keep their employers’ costs low can’t provide the quality of care they might like. Even institutions such as nonprofit hos- pices must contend with the demands of a wider system that emphasizes cutting costs and generating profits. Meanwhile, many other health care institutions have emerged specifically to make money, relegating caregiving to a secondary priority.

Second, we considered the difficulty of providing individualized care in insti- tutional environments. To stay within their budgets, large institutions must provide standardized care, ignoring individual preferences and desires. Patients must follow rules, schedules, and regimens established for efficiency and cost cutting, regardless of the impact on their quality of life.

Third, we explored some of the inherent difficulties of treating health care as an individual or family responsibility rather than a social responsibility. As we have seen, the burdens of caregiving can be enormous. Yet the United States offers little support to those who take on this responsibility. In contrast, other wealthy nations provide far more assistance; both Sweden and Finland, for example, provide long- term paid leaves and free or inexpensive assistance with domestic chores to elderly persons who might otherwise need help from family members (Swedish Institute, 1997, 1999; Zimmerman, 1993).

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In sum, the data presented in this chapter regarding the virtual abandonment of ill and disabled individuals and their caregivers suggest the low priority that American society places on caring for those who are weak or ill, especially if they also are poor. Technology won’t cure these problems. Nor for that matter, is it inherently dehumanizing or otherwise problematic. Rather, technology is a tool adopted for a combination of cultural, medical, emotional, and financial reasons that can be used for good or ill. Only when our underlying social values and com- mitments change can we expect the lives of persons with illnesses and disabilities and their caregivers to improve significantly.

SUMMARY

1. Until around 1900, most Americans received all health care at home. Those who could not care for themselves or obtain care at home were relegated to almshouses—charity institutions with terrible conditions where orphans and criminals, as well as people with illnesses or disabilities, were “warehoused.”

2. Voluntary (nonprofit private) hospitals first emerged in the late 1700s as a means of providing care to the “deserving sick.” Early voluntary hospitals were run as total institutions. Hospital conditions improved dramatically during the Civil War and improved further as the new belief in germs made cleanliness desirable and technological changes made it economically feasible.

3. For-profit, private hospitals emerged as a way of offering better conditions to more affluent consumers. Public hospitals were developed to provide services to individuals with chronic mental or physical illnesses as well as to those considered the “undeserving poor.” By the 1920s, hospital care had become a major part of American life and a center of medical education and research.

4. The initiation of Medicare and Medicaid dramatically increased the profits available to hospitals. Skyrocketing costs led the federal government to implement a system of diagnostic-related groups, under which hospitals receive a prepaid fee for each patient with a given diagnosis, regardless of the actual cost of treatment. To maintain their profits, hospitals shifted toward remunerative outpatient services, technologies, and surgeries.

5. Hospitals now treat an older and more seriously ill mix of patients than in the past, primarily for the acute complications of chronic illnesses. Hospitals—especially public hospitals—have become primary care providers for the poor, which has increased hospitals’ financial problems.

6. Nursing homes offer care to those who need nursing or custodial care but not hospital care. Those who use nursing homes tend to be female and elderly, although young people increasingly live in nursing homes. Most residents and their spouses are bankrupted quickly by the cost of care.

7. Nursing homes are primarily staffed by nursing assistants, who are overwhelmingly female, nonwhite, and low paid. Within nursing homes,

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both nursing assistants and residents are commodified: Nursing assistants become commodities to purchase as cheaply as possible, and residents become expenses to control.

8. Hospices are institutions designed to serve the needs of the dying. To gain social and financial support, hospices have increasingly become routinized, medicalized, and focused on profit making.

9. Hospice care saves insurers money, partly by shifting the cost of care to family members. Terminally ill patients who enter hospices typically live longer and experience a higher quality of life than do those who continue with medical care.

10. Most Americans still receive most of their health care at home, typically from female family members. The physical and emotional strains of caregiving have led to the development of respite care, paid home caregivers, and family leave programs.

11. Technology refers to any human-made object used to perform a task, from Band-Aids to kidney dialysis machines. Technology is never inherently good or bad. Its nature determines the range of ways it might be used, but whether it is harmful, helpful, or both depends on who uses it in which ways.

12. The social construction of technology refers to the political process through which groups decide which potential technologies should be pursued and which should be adopted. This process reflects the needs, desires, and relative power of various social groups, including manufacturers, doctors, and consumers.

13. CPR was designed to restore life to those whose hearts and lungs have stopped. It is almost never successful but has been widely adopted because it helps families come to terms with sudden death, manufacturers have a vested interest in promoting it, and the government never required manufacturers to prove its effectiveness.

14. The technological imperative refers to the belief among both doctors and consumers that technology is almost always good and therefore it is almost always appropriate to use all existing technological interventions, regardless of their cost.

15. Because most men develop prostate cancer but few experience any related health problems, increased testing for this disease has led to skyrocketing rates of medical procedures and increased health problems, but no increase in survival rates. The identification of men with the earliest stage of prostate cancer is an example of pseudodisease, and the treatment of these men is an example of the technological imperative.

16. Partly because of new technologies, medical care is now far less “hands on,” results from medical tests are now often given more credence than patient reports of their symptoms, many tasks have shifted from doctors to new health care providers, and many tasks have shifted from health care providers onto patients and their families.

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REVIEW QUESTIONS

1. Why do sociologists consider 19th-century hospitals to have been total institutions?

2. What led to the development of voluntary hospitals? Public hospitals? The modern hospital as we know it?

3. How has the nature of hospitals changed in recent years?

4. Why did hospices emerge? What are their strengths and weaknesses?

5. Who uses nursing homes, how is this changing, and why?

6. How does the process of commodification affect nursing assistants? How does it affect nursing home residents?

7. Why has home care grown? What are the difficulties faced by family caregivers?

8. What is technology? What do sociologists mean when they say that technology is inherently neither good nor bad and neither a blank slate nor a force outside of human control?

9. What is the social construction of technology? What does it mean to say that this is a political process?

10. Why was CPR so widely adopted even though it is so ineffective?

11. What is the technological imperative? What social factors encourage it?

CRITICAL THINKING QUESTIONS

1. What are the burdens faced by family caregivers, and how have these changed over time? If you were on your governor’s Task Force on Health Care, what policies might you want to implement to lighten those burdens?

2. If you could go back into the past and change one thing in the history of hospitals, what would it be? Why?

3. How can society shape technology? How can technology shape society?

4. Why might sociologists and other observers argue against early detection and treatment of prostate cancer?

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PA RT

Health Care, Health Research,

and Bioethics

Chapter 11 The Profession of Medicine

Chapter 12 Other Mainstream and Alternative Health Care Providers

Chapter 13 Issues in Bioethics

In this final section, we shift our perspective to health care providers and researchers. Chapter 11 provides an overview of the history of medicine as a profession and describes how the social position of doctors has changed over time. In this chap- ter, we also explore the process through which new doctors learn both medical skills and medical culture. Finally, we look at how medical education and medical culture, as well as broader social and cultural factors, affect relationships between doctors and patients.

Although doctors typically are the first persons who come to mind when we think of health care, they form only a small percentage of all health care providers. In Chapter 12, we consider some of these other providers both within and outside the mainstream health care system, including nurses, midwives, and acupuncturists.

The final chapter in this part—and in this book—provides a history of bioethics as well as a sociological account of how bioethics has become insti- tutionalized and how it affects health care and health research. We will see how issues of power underlie ethical issues and why we need a sociological under- standing of bioethics.

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The Profession of Medicine

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LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand how the medical profession gained professional dominance. ● Assess the current threats to medical dominance. ● Describe medicine’s core cultural values. ● Critique the consequences of medical values for patients. ● Provide a sociological analysis of doctor–patient relationships.

To become a doctor, students must spend long years studying biology, chemis- try, physiology, and related subjects. In addition, students must learn the way of thinking about medicine, patients, and medical care that characterizes medical culture.

Michael J. Collins learned this culture during four years as a surgical resident at the Mayo Clinic in Rochester, Minnesota. After a particularly brutal day of sur- gery in which he watched a teenager die, Dr. Collins found himself emotionally traumatized, questioning the meaning of his work and the effect it had on him. Although he wished he could discuss his feelings with B. J. Burke, the director of his residency program, Dr. Collins knew from experience how B. J. would respond. As he wrote in his memoir:

BJ Burke was not interested in what I thought or understood. He was interested in what I did.

“If you want to learn to be sensitive and introspective,” he would say, “do it on your own time.”

I imagined myself being called into his office. As I enter the room he is seated at his desk, reading the report in front of him. He makes certain I know I am being ignored.

At length he looks at me over the top of his glasses. “Dr. Collins, what is your job?” “My job, sir?” “You have a job, don’t you? You get a paycheck, don’t you?” “Yes, sir.” “Well, what do you do?” “I’m a second-year orthopedic resident at the Mayo Clinic.” “Do you want to be a third-year resident someday, Dr. Collins?” “Yes, sir.” “What is an orthopedic resident supposed to do?” Where was this going? “Follow orders?” I venture.

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“An orthopedic resident is supposed to practice orthopedics, Doctor. He is not supposed to go around asking patients if they have ever considered the ontological implications of their fragile, mortal state.”

“I didn’t exactly—” He jumps to his feet and points his finger at me. “We fix things. Do

you understand that? We don’t analyze things. We don’t discuss things. We don’t wring our hands and cry about things. We fix them! If somebody wants to be analyzed they can see a shrink. When they come to the Department of Orthopedics at the Mayo Clinic they want only one thing: they want to be fixed. Now get the hell out of here and go fix things. And I better not get any more reports of touchy-wouchy, hand-holding sessions in this department.” (Collins, 2005:152–153)

Dr. Collins’s story illustrates two basic elements of modern-day medical culture— emotional detachment and a belief in medical intervention. In this chapter, we look at how these and other aspects of medical culture and training evolved and at the consequences for both doctors and their patients. We begin by looking at how doctors became the dominant profession within health care and at the forces that now threaten their dominance.

AMERICAN MEDICINE IN THE 19TH CENTURY

When confronted by disquieting illness, most modern-day Americans seek care from a doctor of medicine. Little more than a century ago, however, that was not the case. Instead, Americans received most of their health care from family mem- bers. If they required more complicated treatment, they could choose from an array of poorly paid and typically poorly respected health care practitioners (Starr, 1982:31–59). These included regular doctors (the forerunners of contemporary doctors) as well as irregular practitioners such as midwives, patent medicine makers who sold drugs concocted from a wide variety of ingredients, botanic eclectics who offered herbal remedies, and bonesetters who fixed dislocated joints and fractured bones.

Regular doctors were also known as allopathic doctors, or allopaths (from the Greek for “cure by opposites”) because they sometimes treated illnesses with drugs selected to produce symptoms opposite to those caused by the illnesses. For example, allopaths would treat patients suffering the fevers of malaria with quinine, a drug known to reduce fevers, and treat patients with failing hearts with digitalis, a drug that stimulates the heartbeat. Their main competitors were homeopathic doctors, or homeopaths (from the Greek for “cure by similars”). Homeopaths treated illnesses with drugs that produced symptoms similar to those caused by the illnesses—treating a fever with a fever-producing drug, for example. Although in retrospect the homeopathic model might seem odd, it drew on the

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same logic as smallpox inoculation, the one successful inoculation available at that time. People who developed a mild form of cowpox after inoculation with a few cowpox cells somehow became immune to the related but far more serious small- pox. Homeopaths, therefore, concluded that patients who received a miniscule amount of a drug that mimicked the symptoms of a given illness would become better able to resist that illness. Modern science now tells us that drugs given in such small quantities can’t biologically affect patients. However, we also now know that belief in a drug’s effectiveness will lead around 30% of patients to experience at least temporary benefit from the drug—even if in reality they only receive sugar pills. This process is known as the placebo effect (Evans, 2003). It seems likely, therefore, that homeopathic drugs did not harm patients and sometimes helped them, if only through the placebo effect.

Until the 20th century, the status of allopathic doctors was no higher than that of homeopaths or self-described healers. This is not surprising, given that science—the careful testing of hypotheses in controlled experiments—had yet to gain more than a foothold in U.S. medical schools. Moreover, the United States licensed neither doctors nor medical schools (Ludmerer, 1985). Instead, and until around 1850, most doctors trained through apprenticeships lasting only a few months. After that date, most trained at any of the multitude of uncertified medical schools that had sprouted around the country, almost all of which were private, for-profit institutions that were unaffiliated with colleges or universities and lacked any entrance requirements beyond the ability to pay tuition (Ludmerer, 1985). Nor were standards stricter at the few university-based medical schools. For example, in 1871, Henry Jacob Bigelow, a Harvard University professor of surgery, protested against a proposal to require written graduation examinations on the grounds that more than half of Harvard’s medical students were illiterate (Ludmerer, 1985:12). Training averaged far less than a year and depended almost entirely on lectures, so few students ever examined a patient, conducted an experiment, or dissected a cadaver. Any student who regularly attended the lectures received a diploma. This situation began to change significantly only in the 1890s and only in the better university schools.

Lacking scientific research or knowledge, allopathic doctors developed their ideas about health and illness either from their clinical experiences with patients or by extrapolating from abstract, untested theories. The most popular theory of illness, from the classical Greek era until the mid-1800s, traced illness to an imbal- ance of bodily “humors,” or fluids. Doctors had learned through experience that ill persons often recovered after episodes of fever, vomiting, or diarrhea. From this, doctors deduced—in part correctly—that fever, vomiting, and diarrhea helped the body restore itself to health. Unfortunately, lacking methods for testing their theories, doctors carried these ideas too far, often inducing life-threatening fever, vomiting, purging, and bloodletting. Consider, for example, the following descrip- tion of how Boston doctors in 1833 used what was known as heroic medicine to treat a pregnant woman who began having convulsions a month before her delivery date:

The doctors bled her of [eight] ounces and gave her a purgative. The next day she again had convulsions, and they took 22 ounces of

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blood. After 90 minutes she had a headache, and the doctors took 18 more ounces of blood, gave emetics to cause vomiting, and put ice on her head and mustard plasters on her feet. Nearly four hours later she had another convulsion, and they took 12 ounces, and soon after, [six] more. By then she had lapsed into a deep coma, so the doctors doused her with cold water but could not revive her. Soon her cervix began to dilate, so the doctors gave ergot to induce labor. Shortly before delivery she convulsed again, and they applied ice and mustard plasters again and also gave a vomiting agent and calomel to purge her bowels. In six hours she delivered a stillborn child. After two days she regained consciousness and recovered. The doctors considered this a conservative treatment, even though they had removed two-fifths of her blood in a two-day period, for they had not artificially dilated her womb or used instruments to expedite delivery. (Wertz and Wertz, 1989:69)

As this example suggests, because of the body’s amazing ability to heal itself, even when doctors used heroic medicine, many of their patients survived. Thus, doctors could convince themselves they had cured their patients when in reality they either had made no difference or had endangered their patients’ lives.

By the second half of the 19th century, the public’s support for irregular practitioners and fear of heroic medicine had led most doctors to abandon their most dangerous techniques. Yet medical treatment remained risky. Allopathic doctors’ major advantage over their competitors was their ability to conduct surgery in life-threatening situations. Unfortunately, until the development of anesthesia in the 1860s, many patients died from the inherent physical trauma of surgery. In addition, many died unnecessarily from postsurgical infections. Dr. Ignaz Semmelweis had demonstrated in the 1850s that because midwives (whose tasks included washing floors and linens) had relatively clean hands, whereas doctors routinely went from autopsies to obstetrical examinations and from patient to patient without washing their hands, more childbearing women died on medical wards than on midwifery wards. Yet not until the 1880s would hand washing became standard medical practice.

Until well into the 20th century, then, doctors could offer their patients little beyond morphine for pain relief, quinine for malarial and other fevers, digitalis for heart problems, and Salvarsan for syphilis—each of which presented dangers as well as benefits. According to the 1975 edition of Cecil’s Textbook of Medicine, one of the most widely used medical textbooks, only 3% of the treatments described in the 1927 edition of the textbook were fully effective, whereas 60% were harmful, of doubtful value, or offered only symptomatic re- lief (Beeson, 1980). Doctors’ effective pharmacopeia did not grow significantly until the development of antibiotics in the 1940s. Similarly, surgery in the early 20th century still relied on only a few basic technologies and remained rare and dangerous, although nowhere near as dangerous as it had been before the devel- opment of anesthesia and antiseptic techniques.

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THE RISE OF MEDICAL DOMINANCE

Despite the few benefits and many dangers inherent in allopathic medical care, by 1900 doctors had eliminated most of their competitors and gained control over health care (Starr, 1982:79–112). In this section, we will see how this change came about.

From its inception in 1847, the American Medical Association (AMA) had worked to restrain the practices of other health care occupations. State by state, the AMA fought to pass laws outlawing their competitors or restricting them to working only under allopathic supervision or performing only certain tech- niques such as spinal manipulation.

Most of these efforts met with little success initially because 19th-century Americans considered health care an uncomplicated domestic matter, unrelated to science, and requiring no special training (Starr, 1982:90–92). By the beginning of the 20th century, however, as improvements in public health and living conditions ended scourges such as cholera and typhoid and as Americans began reaping prac- tical dividends from scientific advances such as electric lights and streetcars, public faith in science swelled. Increasingly, Americans defined health care as a complex matter requiring expert intervention, assumed the superiority of “scientific” med- icine, and turned to allopathic doctors for care (Starr, 1982:127–142).

Like the public, homeopaths and botanic eclectics (allopathic doctors’ major competitors) also came to recognize the benefits of science and therefore realize that a lack of scientific foundation could doom their fields. However, they still re- ceived considerable popular support. Moreover, because, like allopaths, most were white men, homeopaths and botanic eclectics generally held social statuses similar to those of allopaths. Thus, homeopaths and botanic eclectics retained sufficient influence to pressure allopaths to accept them into medical schools and licensing programs, and their fields eventually faded away.

Other health care workers could bring far less power to their dealings with legislators and with allopathic doctors. Newly emerging occupations such as chi- ropractic (described in Chapter 12) lacked the long-standing history of popular support that had allowed homeopaths to push for incorporation with allopathy. Meanwhile, older occupations such as midwives and herbalists lacked the social status, power, and money needed to fight against doctors’ lobbying. Because most of these practitioners were women or minorities, they were assumed to be incom- petent by both legislators and doctors (Starr, 1982:117, 124).

The Flexner Report and Its Aftermath

These differences between allopathic doctors and other health care practitioners increased during the early 20th century. Since the 1890s, the better medical schools had begun tightening entrance requirements and stressing academic standards, sci- entific research, and clinical experience. These changes increased the pressure on other medical schools to do the same. Those pressures increased following the 1910 publication of the Flexner Report on American medical education (Ludmerer, 1985:166–190). Written by Abraham Flexner and commissioned by the nonprofit

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Carnegie Foundation at the AMA’s behest, the report shocked the nation with its descriptions of the lax requirements and poor facilities at many medical schools. The Flexner Report increased the pressures on all medical schools to improve their programs and accelerated the changes already underway. In the next few years, responding to pressure from both the public and the AMA, all U.S. states began enforcing stringent licensing laws for medical schools (Ludmerer, 1985:234–249). These laws hastened the closure of all proprietary and most nonprofit schools, many of which were already suffering financially from the costs of trying to meet students’ growing demand for scientific training. As a result, the number of medical schools fell from 162 in 1906 to 81 in 1922 (Starr, 1982:118, 121).

The Flexner Report, in conjunction with the changes already underway in medical education, substantially improved the quality of health care available to the American public and paved the way for later advances in health care. However, these changes in medical education also had some more problematic results. The closure of so many schools made medicine as a field even more homogeneous because only two medical schools for African Americans and one for women survived (Ludmerer, 1985:248; Starr, 1982: 124). In addition, few immigrants, mi- norities, and poorer whites could afford the tuition for university-based medical schools or meet their strict educational prerequisites. Moreover, many of these schools openly discriminated against women, African Americans, Jews, and Cath- olics. Thus, even though the technical quality of medical care increased, fewer doctors were available who would practice in minority communities and who understood the special concerns of minority or female patients. At the same time, simply because doctors were now more homogeneously white, male, and upper class, their status grew, encouraging more hierarchical relationships between doctors and patients.

Doctors and Professional Dominance

By the 1920s, doctors had become the premiere example of a profession (Parsons, 1951). Although definitions of a profession vary, sociologists generally define an occupation as a profession when it has three characteristics:

1. The autonomy to set its own educational and licensing standards and to police its members for incompetence or malfeasance;

2. Technical, specialized knowledge that is unique to the occupation and learned through extended, systematic training; and

3. Public confidence that its members follow a code of ethics and are motivated more by a desire to serve than a desire to earn a profit.

During the first half of the 20th century, doctors clearly met this definition of a profession (Timmermans and Oh, 2010). Most doctors worked in private prac- tice (whether solo or group) and set their own hours, fees, and other conditions of work. Those who worked in hospitals or clinics were typically supervised by other doctors, not by nonmedical administrators. And even in these settings, only doc- tors had the authority to review other doctors’ clinical decisions, and this authority

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was rarely exercised. Similarly, only doctors served on boards that evaluated medi- cal schools and granted or revoked medical licenses. Finally, the public placed great trust in doctors, believed most doctors worked selflessly to serve their patients, and routinely ranked medicine as the most prestigious occupation. These expectations were confirmed by doctors’ adoption of a professional code of ethics. “Ethical De- bate: A Duty to Provide Care?” on p. 256 explores one aspect of that code.

As this suggests, as the leading profession in the health care world, doctors enjoyed—and to some extent still enjoy—an unusually high level of professional dominance: freedom from control by other occupations or groups and the ability to control any other occupations working in the same economic sphere (Freidson, 1994; Timmermans and Oh, 2010). Although doctors often supervised, taught, or set licensing standards for members of other health occupations, those other occu- pations rarely had any say over doctors’ work.

THE THREATS TO MEDICAL DOMINANCE

More recently, however, this high level of professional dominance by doctors— otherwise known as medical dominance—has come under threat.

The Rise of Corporatization

Until the 1960s, nonprofit or government agencies owned most hospitals and other health care institutions. With the initiation of Medicare and Medicaid, however, the potential for profits in health care expanded tremendously, leading many for-profit corporations to enter the field, as we saw in Chapter 8 (Starr, 1982:428–432; Timmermans and Oh, 2010). This growth of corporate medicine is known as corporatization.

Corporatization has substantially affected the work lives of American doctors. As Americans increasingly have obtained their insurance through managed care organizations, doctors have increasingly found employment within those orga- nizations. Passage of the Affordable Care Act has also led doctors to take salaried positions as a way to protect themselves financially from whatever changes that law may bring (Rosenthal, 2014a; Ruggieri, 2014). In addition, many physicians now work for urgent care centers, which may be owned by insurers, drugstore chains such as CVS, and stores such as Walmart (Abelson and Creswell, 2018). Meanwhile, hospitals increasingly are buying up private medical practices to expand their posi- tion in the market, increase their bargaining power with insurers, and thus gener- ate more profits. Buying medical practices also increases hospitals’ profits because primary care doctors who work for a hospital are expected to refer their patients to surgeons who work for the same hospital and who typically conduct surgery only in that hospital (Ruggieri, 2014). Currently, the majority of primary care doctors and around two-thirds of surgeons work as paid employees of hospitals or some other corporate institution, and most of the rest obtain their patients largely through contracts with managed care organizations (Rosenthal, 2014a; Ruggieri, 2014).

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In all of these circumstances, doctors’ autonomy has diminished. Administra- tors have taken over decisions formerly made by individual doctors such as setting doctors’ fees and work schedules, requiring doctors to obtain authorization before scheduling surgeries or prescribing certain medications, and expecting doctors to follow practice protocols that establish treatment guidelines aimed at pro- viding the best—but also most cost-effective—treatment for different conditions (McKinlay and Marceau, 2002; Vanderminden and Potter, 2010).

Meanwhile, concern about costs has led corporations to replace doctors with radiation technologists, pharmacists, nurse practitioners, and other allied health personnel. This shift has reduced both doctors’ bargaining power with administra- tors and their power over other health occupations.

The Rise of Government Control

Concern about costs has also led the government to restrict doctors’ professional autonomy (Timmermans and Oh, 2010). Because the government pays the bills generated by Medicaid and Medicare, it has a large vested interest in controlling

A Duty to Provide Care?

In 2014, the Ebola virus disease began raging across Guinea, Liberia, and Sierra Leone. Soon reports appeared of high fatality rates, not only among patients but also among doctors, nurses, and aides.

In some ways these deaths were not surprising, given the almost total lack of gloves, masks, and other basic infection-control equipment in some West African clinics and hospitals. When two nurses were infected by an Ebola patient in a Dallas hospital, however, despite having taken what seemed like reasonable precautions, fears understandably spread among the health care community, some of whom began questioning whether they had a duty to care for such patients.

Do health care workers have a duty to provide care, even when their own lives or health might be at risk? This question surfaces whenever epidemics rage—from bubonic plague in the Middle Ages to HIV/AIDS 40 years ago and to the Ebola and Zika viral diseases today. It also surfaces during wars and disasters. For example, some doctors and nurses rushed to Puerto Rico’s hospitals to help during 2017’s Hurricane Maria, and some in El Salvador have stayed to help despite gang violence while others have fled.

According to the AMA, doctors have an obligation to provide care whenever they are competent to do so (Twardowski, 2014). This argument is based on the idea that anyone trained and licensed in a helping profession—especially when that training was heavily subsidized through government funding—has accepted the obligation to pay the nation back by helping others. This argument further suggests that the duty to care is highest among those trained in specialties such as infectious disease and lowest for those who receive far less subsidy or training, such as nursing aides.

But is that duty to care absolute? And most important, do nations and health care systems have a duty to protect health care workers whenever possible? And if nations and health systems fail to meet this obligation, does that release health care workers from the duty to care?

ETHICAL DEBATE

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doctors’ fees and treatment decisions. To do so, it has established programs such as the diagnosis-related groups (DRGs) system and the resource-based relative value scale (RBRVS). The DRG system (described in Chapter 8) es- tablished preset financial limits for each diagnosis for hospital care under Medicare (and in some states, Medicaid). Because hospitals are not reimbursed for any costs above those limits, they have a vested interest in making sure doctors stay below the limits. Consequently, hospitals may cut the wages or terminate the contracts of doctors who consistently exceed DRG limits, thus pressuring all doctors in their employ to stay within those limits. Doctors sometimes conclude that they have only two choices: to misreport a patient’s diagnosis on the DRG form so they can justify more expensive treatments they believe are necessary or ignore their own clinical judgment and change their treatment plans to stay within DRG limits.

Whereas DRGs were designed to control Medicare spending on hospital care, RBRVS was designed to control spending on doctors’ bills. RBRVS is a complex formula for determining appropriate compensation for medical care under Medi- care based on estimates of the costs and effort required to provide specific services in specific geographic areas. Under this system, incomes of most specialists have

Similarly, does the duty to care mean that health care workers must use all available techniques, regardless of risk? For example, we might argue that there is an obligation to provide basic supportive care to someone with a dangerous infectious disease, but not to provide treatments that are more likely to infect health care workers than to save patients’ lives.

From a practical perspective, the most effective approach may be to put in place the guidelines, training, and technologies that will best protect health care workers. Doing so would not only protect workers and patients from harm but also increase the odds that workers would volunteer for potentially hazardous work. In turn, increasing the numbers of willing and trained workers would help prevent diseases from spreading, thus providing the greatest good for the greatest number of people.

Sociological Questions

1. What views about health care and health care professionals are reflected in the AMA’s position on the duty to treat?

2. Does the nation have an obligation to protect health care workers? How is this different from its obligation—or lack of obligation—to protect other workers?

3. Which social groups might argue against a duty to care? Against the funding needed to make that duty reasonably safe?

4. Which of these groups has more power to enforce its view? What kinds of power do they have?

5. What are the intended consequences of mandating a duty to care? What might be the unintended social, economic, political, or health consequences of this policy?

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declined, whereas those of generalists (other than pediatricians, who receive no Medicare funds) have increased. Although RBRVS legally applies only to Medi- care, most other public and private insurance plans also have adopted it.

The Decline in Public Support

Beginning in the 1960s, the rise of the civil rights and feminist movements increased popular emphasis on questioning rather than obeying authorities. These changes helped foster the feminist health movement, the disabled rights movement, and the patients’ rights movement, all of which encouraged consumers to take charge of their own health, obtain second opinions, demand more egalitarian relationships with their doctors, and consider using nonmedical health practitioners (Timmermans and Oh, 2010). These movements have stimulated major changes in medical practice ranging from the sharp decrease in use of general anesthesia during childbirth to the routine use of informed consent forms before patients receive experimental drugs.

Other structural changes also have reduced patients’ willingness to accept medical dominance (Timmermans and Oh, 2010). The rise of managed care—and the political backlash against it—has fostered a steady stream of news stories about doctors who supposedly withhold needed care from patients to meet the dictates of managed care organizations. Such stories have left patients less willing to trust their doctors’ advice or motives.

Meanwhile, because of the shift from fee-for-service medicine toward insurance-paid medicine, far fewer consumers enjoy long-standing relationships with primary care doctors (i.e., doctors in family practice, internal medicine, or pediatrics who are typically the first doctors individuals see when they need medi- cal care). Instead, employers (and consumers) routinely change insurance programs, and insurance programs routinely change their lists of contracted doctors, so con- sumers often must start new relationships with new doctors. As a result, doctors less often enjoy the sort of trust from their clients that can only develop over time. This loss of trust has been amplified by frequent news stories on the dangers of medical errors and the financial incentives for doctors to recommend costly tests or drugs.

At the same time, easy access to the Internet has shaken consumer trust in medicine by providing access to both medical websites and websites that critique medical care (Shilling, 2001; Vanderminden and Potter, 2010). The federal govern- ment has supported the opening of medical information to consumers; its web- site at www.healthfinder.org was established specifically to give consumers online access to publications, clearinghouses, databases, other websites, self-help groups, government agencies, and nonprofit organizations related to both allopathic and alternative medicine. Such information can lead consumers to diagnose them- selves, challenge their doctors’ recommendations, or seek nonmedical care, thus challenging medical dominance.

The Decline of the American Medical Association and Countervailing Powers

Medical dominance has also been threatened by the decline of the AMA. Whereas a half-century ago most doctors belonged to the AMA, now at most one-quarter

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do. Instead, some doctors join more liberal organizations that often oppose the AMA such as Physicians for Social Responsibility, and many join specialty organi- zations such as the American College of Obstetricians and Gynecologists. As a re- sult, no one group can speak with the full force of the medical profession behind it.

Meanwhile (and as Chapter 8 discussed), the insurance and pharmaceuti- cal industries have become far more powerful over time. For example, the AMA contributed almost $400,000 to political candidates during the 2018 elections (Center for Responsive Politics, 2018). Those contributions, however, are dwarfed by the many millions of combined contributions from pharmaceutical companies, health insurance companies, hospitals, and other health professions. As a result, these other groups sometimes can join together to achieve political goals that the AMA opposes. Taken together, these countervailing powers—the various powerful groups and institutions fighting for control over a given arena such as health care—are actively challenging medical dominance (Light, 2010; Riska, 2010; Timmermans and Oh, 2010). “Key Concepts: Countervailing Powers,” illustrates this concept, using the example of recent policy debates regarding mammograms.

THE CONTINUED STRENGTH OF MEDICAL DOMINANCE

Despite declines in autonomy and threats from countervailing powers, medical dominance remains a strong force (Freidson, 1994; Timmermans and Oh, 2010).

As much as corporations want to maintain their profit margins, they must rely on doctors’ cooperation to generate profits and control costs. Doctors have fought fiercely and often successfully against some of the restrictions built into managed care. As a result, even when doctors work directly for corporations, they continue to enjoy considerable autonomy over day-to-day clinical matters. Prac- tice protocols are rarely enforced, and doctors’ treatment recommendations are

Countervailing Powers

According to researchers, if 2000 women ages 40 to 49 receive mammograms (used to detect breast cancer), one woman’s life may be saved. However, hundreds will erroneously be told they have cancer, and many of them will receive unnecessary biopsies, radiation, or even mastectomies (Keen, 2010). After research documenting these data appeared, the U.S. Preventive Services Task Force issued a recommendation advising against mammograms for women in their 40s unless they were at unusually high risk of cancer. The uproar that followed—from doctors, consumers, and others—led the task force to replace that recommendation with the suggestion that women in their 40s discuss the evidence with their doctors and make their own decisions. The forces allied for and against various mammogram policies illustrate the countervailing powers—including other doctors—that doctors sometimes face.

KEY CONCEPTS

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rarely rejected (Mendel and Scott, 2010). Similarly, when corporate or govern- mental insurers cut doctors’ fees per service, doctors can maintain their incomes by performing more tests or treatments per patient, especially elective procedures for which patients pay out of pocket. Many doctors now heavily advertise cos- metic surgery, laser eye surgery, infertility treatment, and weight-loss treatment because these procedures are high paying and largely free of oversight by insur- ance, government, or hospital bureaucrats (Sullivan, 2001). Still other doctors have sought greater autonomy—and income—by establishing “boutique” med- ical practices that in some cases sidestep managed care organizations and health insurers altogether as discussed in “Contemporary Issues: The Rise of ‘Boutique Medicine.’”

The dominance of doctors relative to other health care occupations also re- mains largely intact. First, doctors have successfully kept other occupations from any role in regulating medical licensure or practice standards while maintaining a

CONTEMPORARY ISSUES

The Rise of “Boutique Medicine”

Boutique medicine (also known as direct-pay, retainer-based, or concierge medicine) refers to medical practices—almost always in primary care—that charge patients a yearly administrative fee in addition to any charges for medical care. In some practices the administrative fees cover all provided medical services, but in other practices patients must pay all costs not covered by their health insurance. Still other practices do not accept health insurance, and so patients must pay all costs for care out of pocket—even though the ACA requires all Americans to have health insurance (Gavirnen and Kulkarni, 2014; Shrank, 2017).

Although boutique practices remain rare, increasing numbers of doctors are turning to this option. Charging administrative fees allows doctors to dramatically cut their caseloads and work hours while dramatically increasing their incomes. This is particularly appealing to primary care doctors because their incomes are on average substantially lower than that of specialists. In addition, doctors who refuse insurance coverage don’t need to spend time and energy dealing with insurers. Finally, reducing patient load gives doctors the time to really get to know their patients and their health care concerns. (Gavirnen and Kulkarni, 2014; Shrank, 2017).

Patients who join boutique practices can also benefit. Among other things, patients typically receive benefits such as phone or e-mail access to their physicians, same-day appointments, less-rushed appointments, and even home visits and immediate access to top-ranked specialists (Murray, 2017).

Although boutique medical practices remain rare, their rising prevalence has raised concerns about access and equity. By definition, patients who join boutique practices receive services that others do not. And when doctors drastically cut the number of patients they serve, those who can’t afford their services typically find it harder to find a doctor. By the same token, doctors who don’t join boutique practices will face greater pressure to increase their own caseloads, which they can only do by shortening the time they spend with each patient. Finally, allowing wealthier people to buy their way out of some of the difficulties of our health care system makes it less likely that these influential individuals will support real and constructive change for everyone.

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voice in regulating allied health fields. Second, doctors sometimes can use the rise of allied health fields for their own benefit. For example, nurse practitioners now perform many tasks once done by primary care doctors. Yet doctors still often hire, fire, and set the salaries of these nurse practitioners while retaining the option of meeting with any patients they find interesting (and remunerative). Third, even though most managed care organizations, hospitals, and other large health care en- terprises are now run by professional administrators, most also have a medical di- rector with considerable power to oppose any administrative dictates that threaten doctors’ work conditions or clinical decision making. Fourth (and as Chapter 6 discussed), doctors have responded to the challenges posed by alternative health care occupations by adopting practices such as acupuncture, offering services such as vitamin supplements and massage in their offices, and fighting regulatory battles against other alternative occupations (Timmermans and Oh, 2010).

Similarly, although general trust in the health care system has declined, 70% of Americans still report having “a great deal of trust” in the advice they get from their own doctors (Center for Responsive Politics, 2018). And although many seek medical advice from the Internet, most use it as a supplement to medical care rather than as a replacement. Indeed, patients often seek their doctors’ assistance in interpreting materials they have found on the Internet, thus reinforcing rather than threatening trust in doctors and medical dominance (Vanderminden and Potter, 2010).

In sum, as Timmermans and Oh (2010:S101) write, “The medical profession has a long track record of deflecting internal and external challenges, appropriat- ing reform attempts, safeguarding its interests, and maximizing profit.” Although medical dominance is constantly under challenge, it remains a powerful force in the health care arena.

MEDICAL EDUCATION AND MEDICAL VALUES

Despite the assaults on medical dominance, becoming a doctor remains an at- tractive option that offers prestige, the emotional rewards of service, and high incomes. Although applications to medical school declined steadily from 1996 to 2003, they have climbed by 25% since then, perhaps because those who grew up during and after the recession have sought “safe” careers or because physician salaries have continued to grow faster than inflation (Association of American Medical Colleges, 2017a; Kane, 2018). In this section, we look at how doctors in training learn both medical knowledge and medical values, and consider the con- sequences of this training for both doctors and patients.

The Structure of Medical Education

Becoming a doctor is not easy. Prospective doctors first must earn a bachelor’s degree and then complete four years of training at a medical school. Before they can enter practice, however, and depending on their chosen specialty, they must

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spend another three to eight years as residents, doctors who continue their train- ing while working in hospitals. (The term intern, referring to the first year of a residency, is no longer commonly used.) As a result, most physicians don’t enter practice until age 30.

For around 74% of students, going to medical school means going into debt. The median debt is $190,000, not including undergraduate debts (Association of American Medical Colleges, 2017b). Debt levels have increased substantially over the last 25 years in response to substantial increases in tuition fees.

Becoming a doctor also carries tremendous time costs. Regulations first ad- opted after the 1989 death of a patient treated by exhausted residents now limit first-year residents to working “only” 16 hours per day; second-year residents can still work 24-hour shifts every three days. Even after graduation, doctors typically work long hours. These time pressures, coupled with the financial pressures of training, encourage novice doctors to defer marriage, children, and other personal pursuits and to choose specialties requiring less training over those they otherwise might prefer.

Ethnicity, Sex, Class, and Medical Education

Most medical students—like most college graduates—are from the middle and upper classes. A strong majority of medical students have parents whose joint in- come is more than $100,000 (Association of American Medical Colleges, 2017a), which is considerably higher than the national average. Rising tuition costs over the last decade have undoubtedly reinforced this trend.

Compared to their percentage of the population as a whole, Asian Americans are significantly overrepresented among medical students, whereas Hispanic Americans and non-Hispanic African Americans are underrepresented (Association of American Medical Colleges, 2017a). These ethnic differences reflect social class differences (Asians are more likely to come from affluent homes), cultural differences in the value placed on education, and teachers’ stereotypes (at all grades) regarding which students are capable of succeeding in science (Bettie, 2003; Kozol, 2005).

On the other hand, medicine increasingly has opened to women, who now make up almost half of medical students (Association of American Medical Col- leges, 2017). However, women still face substantial difficulties in the field both during their education and afterward. In one survey, for example, 82% of female residents reported hearing colleagues or supervisors tell hostile or sexist jokes about women, 62% reported receiving overtly sexual comments from coworkers or supervisors, and 22% reported receiving sexual advances from coworkers or supervisors (Hinze, 2004). Moreover, women remain concentrated in certain specialties, most of which are relatively low paid (Anspach, 2010). As Figure 11.1 shows, as the percentage of women in a field increases, salaries typically decrease.

Women’s concentration in certain specialties reflects a combination of volun- tary choices and structural constraints (Hoff, 2010; Riska, 2010). In the past, many believed that the distribution of women within medicine reflected an innate ten- dency toward fields that emphasized hands-on caring such as pediatrics. This ex- planation, however, fails to explain why women are also disproportionately found

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in radiology (a highly technological field) and pathology (conducting autopsies on dead bodies). Similarly, it can’t explain why 30 years ago almost no women worked in obstetrics and now the field is overwhelmingly female.

In contrast, gender norms do help explain the distribution of women across specialties (Hoff, 2010; Riska, 2010). Those norms sometimes push women toward specialties and practice types that offer regular hours and thus make family life more manageable (dermatology versus surgery, salaried versus independent prac- tice). At the same time, women are often pushed away from various fields by the lack of doctors willing to mentor them and by senior doctors’ belief that women can’t succeed in these fields.

Learning Medical Values

Professional socialization refers to the process of learning the skills, knowl- edge, and values of an occupation. During their long years of training, doctors learn not only a vast quantity of technical information but also a set of medical norms—expectations about how doctors should act, think, and feel. As this sec- tion describes, the most important of these norms are that doctors should value emotional detachment, trust clinical experience more than scientific evidence, master uncertainty, adopt a mechanistic model of the body, trust intervention more than normal bodily processes, and prefer treating rare or acute illnesses rather than common or chronic illnesses.

Emotional Detachment Undoubtedly, most doctors enter medicine because they want to help others. Yet perhaps the most central medical norm is to main- tain emotional detachment from patients (Coulehan and Williams, 2001; Hafferty, 1991). As illustrated by the story that opened this chapter, medical culture values and rewards “strength” and equates emotional involvement or expression with weakness (Hafferty, 1991).

FIGURE 11.1 Median Physician Salaries by Percentage Women in Specialty

SOURCE: Kane (2018).

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Medical training regularly reinforces emotional detachment as faculty and students implicitly or explicitly ridicule those who display emotions and question their ability to serve as doctors (Hafferty, 1991). During daily rounds of the wards, faculty members grill residents on highly technical details of patients’ diagno- ses and treatments. Except in family practice residencies, however, faculty mem- bers rarely ask about even the most obviously consequential psychosocial factors. Rounds and other case presentations also teach residents to describe patients in depersonalized language. Residents learn to describe individuals as “the patient,” “the ulcer,” or “the appendectomy” rather than by name, thus separating the body from the person. The use of medical slang, meanwhile, which peaks during the highly stressful residency years, allows students and residents to turn their anxi- eties and unacceptable emotions into humor by using terms such as gomers for elderly demented patients and not citizens for unruly drug addicts. Such terms help doctors vent frustrations regarding the difficulties they face and maintain needed emotional distance but also reinforce disparaging attitudes toward patients (Ofri, 2013). So, too, does language like “The patient denies nausea” instead of “Mrs. Clark reports that she does not have nausea.”

The structure of the residency years largely prevents residents from emo- tionally investing in patients (Ofri, 2013). Long hours without sleep often make it impossible for residents to provide much beyond the minimum physical care necessary (Christakis and Feudtner, 1997). When combined with the norm of emotional detachment, such long hours can even encourage doctors to view their patients as foes. As T. M. Luhrmann wrote in his memoir of medical residency:

I came in one morning to rounds and heard one of my classmates discussing his previous night on call. “Oh,” he said, “a woman came in, and we did such and such and such and such but luckily she died by morning.” What appalled me was that I understood how he felt: If she had lived, he would have had someone else to take care of. (2007:84)

Clinical Experience In addition to teaching doctors certain attitudes toward patients, medical culture also teaches—at a more abstract level—a set of attitudes toward medical care, illness, the body, and what makes humans truly human.

Ironically, given that doctors’ prestige rests partly on their scientific training, medical culture values clinical experience more than scientific research and knowl- edge (Bosk, 2003; Timmermans and Oh, 2010). Students are routinely instructed to value their intuition and their professors’ clinical experience over the results of scientific research. At any rate, various reviews of modern medical treatments have found that fewer than half have good scientific support behind them (British Med- ical Journal, 2014; Harris, 2017; Prasad et al., 2013). Similarly, when scientists rep- licate important research studies reported in prestigious biomedical journals, they frequently learn that the original results were in error: Drugs that appear to cure disease don’t actually do so, genes that appear to cause disease don’t do so, and so on (Harris, 2017). These errors can stem from mismeasurement, unconscious researcher bias, errors in statistical analysis, and laboratory contamination, among other things.

High-quality research supporting surgical interventions is even rarer. This partially explains why standard clinical procedure varies enormously across the

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nation, producing high rates of medical error as well as rates of lumpectomies, prostatectomies, and back-pain surgery that are more than 30 times higher in some states than in others (Wennberg, 2010). Figure 11.2 illustrates these differ- ences with regard to spinal fusions for back pain, a surgery with considerable risk but uncertain benefits: 13% of patients who receive spinal fusions require another surgery within 30 days (Martin et al., 2014).

Recognition of these wide geographical variations in medical care, combined with concern about rising costs of health care, have led policy makers (including some doctors) to push for the development of evidence-based medicine: med- ical care based on a thorough evaluation of the best available scientific research, especially research using random samples and appropriate statistical controls. Almost all medical schools now explicitly incorporate evidence-based medicine into their curricula.

Unfortunately, the data suggest that this training has had little effect (Timmer- mans and Berg, 2003a; Timmermans and Oh, 2010). When doctors are working on a case, they rarely have time to obtain the latest research findings on the topic let alone evaluate that research fully. Instead, they often must settle for reading a single review or research article. In addition, because practice protocols can’t cover

FIGURE 11.2 Geographic Variations in Use of Spinal Fusion for Back Pain

SOURCE: Martin et al., 2014.

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all the circumstances in any case and rarely provide an absolute answer, doctors still must rely on their clinical judgment. Finally, medical training and practice remain hierarchical environments in which doctors and medical students are expected to defer to senior doctors and thus are unlikely to challenge orders from senior doc- tors even if those orders go against practice protocols. On the other hand, because junior doctors increasingly turn to the research literature for answers, more senior doctors must do so as well to retain their reputations and status. In sum, although evidence-based medicine has affected medical care, clinical experience remains the more common basis for decision making.

Mastering Uncertainty One reason medical culture values clinical experience over scientific knowledge is that there is simply too much knowledge for students to learn it all. As a result, students can never be certain they have treated a patient correctly. Moreover, because the answers to so many medical questions remain un- known, even a student who somehow learned all the available medical knowledge would still face uncertainty about diagnoses and treatments. From the start of med- ical school, then, students must learn how to cope emotionally with uncertainty and how to reduce uncertainty where possible through such tactics as primarily studying discrete facts most likely to show up on examinations rather than broader conceptual issues (Fox, 2000). Students also must learn to question whether their difficulties in treating patients stem from a lack of available knowledge in the field or from their lack of familiarity with the available knowledge. Simultaneously, however, students’ experiences in medical school classes and on the wards where they study also teach them that they must hide their sense of uncertainty if they are to be regarded as competent by their professors and patients (Lingard et al., 2003).

Mechanistic Model Along with learning to master uncertainty, medical stu- dents also learn to consider the body analogous to a machine or factory and to consider illness analogous similar to a mechanical breakdown (Waitzkin, 1993). For example, medical textbooks routinely describe the biochemistry of cells as a “production line” for converting energy into different products, and the female reproductive system as a hierarchically organized factory that “breaks down” at menopause. The mechanistic model of the body and illness leads naturally to a distrust of natural bodily processes. Doctors learn to always look for signs that the body is breaking down and to view changes in the body as causes or consequences of such breakdowns. As a result, doctors typically view pregnancy as a disease, fight against the effects of aging, use drugs to control minor fevers (the body’s natural process for fighting infection), and so on. For example, although the World Health Organization recommends that cesarean sections—a major abdominal surgery— should be performed only when necessary and in no more than 15% of births (AbouZahr and Wardlaw, 2001), many U.S. obstetricians now argue that cesareans are safer than vaginal childbirth and encourage women to choose cesarean section even when not medically necessary. In some hospitals, up to 70% of women now deliver via cesareans (Kozhimannil et al., 2013).

Intervention As this example suggests, learning to distrust natural processes is in- timately interwoven with learning to value medical intervention. During the first

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two years of medical school, most students receive only minimal instruction in using tools such as nutrition, exercise, or biofeedback to prevent or treat illness; during the rest of their training, such tools are rarely—if ever—mentioned. Conversely, professors routinely devote much class time to extolling the virtues of technological interventions and encourage students to aggressively seek experience in surgery and the like. Those who do so receive the most approval from their professors.

Emphasis on Acute and Rare Illnesses As a natural corollary of valuing inter- vention (and a natural result of locating medical training within research-oriented universities), medical culture teaches doctors to consider acute disease more in- teresting than chronic disease. This is not surprising given that doctors often can perform spectacular cures for acute diseases (such as appendicitis) but can do little for chronic diseases (such as lupus). Similarly, medical culture teaches doctors to consider rare diseases more interesting than common ones because the former re- quire well-honed diagnostic skills and complex tools even if they can’t be treated.

The Consequences of Medical Values

In sum, medical training teaches doctors to value emotional detachment, trust their clinical experience, adopt a mechanistic model of illness, rely on interventions, master uncertainty, and prefer working with rare or acute illnesses. Although each value serves a purpose, each also can work against the provision of high-quality health care. Emotional detachment can lead doctors to treat patients insensitively and to overlook the emotional and social sources and consequences of illness. In addition, it can cause doctors to feel disdain for patients they consider too emo- tional. How much emotion a person shows, however, and how that person does so, depends partly on his or her cultural socialization. In contemporary America, women and members of some ethnic minority groups are more likely than are men and nonminorities to display emotion openly. Consequently, these groups are more likely to bear the brunt of doctors’ disdain.

Meanwhile, the emphasis on clinical experience, although sometimes useful, can lead doctors to adopt treatments that have not been tested through controlled clinical trials and that lack scientific validity, such as treating ulcers (which are now known to be caused by bacteria) with a bland diet. In addition, the desire for clin- ical experience sometimes encourages medical students and residents to perform procedures from drawing blood to doing surgeries, even if they lack sufficient training or supervision or the procedures cause unnecessary pain. Medical stu- dents and doctors are most likely to do so if they can define a patient as “training material” rather than as an equal human being. This is most likely to happen when patients are female, minority, poor, elderly, or otherwise significantly different both from the doctors and from the patients on whom those doctors assume they will someday practice.

Mastering uncertainty is necessary if physicians are to retain enough confi- dence in their clinical decisions to survive emotionally. And presenting an image of authoritative knowledge undoubtedly increases patient confidence and stimulates a placebo effect, if nothing else. At the same time, the desire for certainty—or at

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least an aura of certainty—also probably contributes to authoritarian relationships with patients. This is particularly problematic when proper treatment really is un- certain. For example, doctors are particularly uncomfortable with patients whose diagnoses are unclear or whose treatment is unsuccessful. Similarly, even though for years evidence indicated that hormone replacement therapy for menopause is dangerous, many doctors—perhaps unwilling to give up their aura of certainty— continue to dismiss concerns about these practices and to recommend them to their patients (Prasad et al., 2013).

The emphasis on working with rare illnesses also creates problems. Most im- portant, this emphasis (along with the emphasis on intervention) has contributed to the oversupply of specialists and undersupply of primary care doctors in the United States (Hoff, 2010; Mullan, 2002). Some two-thirds of U.S. doctors are spe- cialists, although most patients require only primary care (U.S. Bureau of the Cen- sus, 2013). Similarly, emphasizing acute illness leads doctors to consider patients with chronic illnesses uninteresting and makes, for example, orthopedic surgery a more appealing field to new doctors than rheumatology (the nonsurgical care of arthritis and related disorders).

Other problems stem from medicine’s mechanistic model of the body. This model leads doctors to rely on reductionistic treatment, or treatment in which doctors consider each body part separately from the others—reducing the prob- lem to one part—in much the way auto mechanics might replace an inefficient air filter without checking whether the faulty air filter was caused by problems in the car’s fuel system. In contrast, sociologists (as well as a minority of doctors) argue for a more holistic image of how the body works and of how illness should be treated (Waitzkin, 1993). Holistic treatment refers to treatment that assumes all aspects of an individual’s life and body are interconnected. For example, rather than per- forming wrist surgery on typists who have carpal tunnel syndrome, it might be better to recommend using a wrist rest while typing or changing the height of the typist’s desk. And rather than simply excising a tumor when someone has cancer, perhaps doctors and other health care workers should also explore how their pa- tients’ social and environmental circumstances contributed to cancer growth and how psychological and financial support might improve their odds of recovery.

Finally, emphasizing intervention can foster overtreatment by encouraging medical students to enter the most interventionist specialties and encouraging doc- tors to use the most interventionistic tools even when more conservative approaches might better serve patients’ interests. For example, research suggests that back pain can best be treated by improving the ergonomics of individuals’ work environments rather than by injecting potentially dangerous steroids into patients’ spinal columns, yet doctors more commonly suggest the latter rather than the former (Hadler, 2008).

PATIENT–DOCTOR RELATIONSHIPS

From the beginnings of Western medicine, medical culture has stressed a pater- nalistic value system in which only doctors, and not patients or their families, are presumed capable of making decisions about what is best for a patient. Often this

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paternalism is reinforced by patients who prefer to let their doctors make all deci- sions; indeed, at least part of doctors’ efficacy comes simply from patients’ faith in doctors’ ability to heal. Paternalism is also reinforced by the fact that doctors report spending 13–16 minutes per patient visit (and may actually spend less), which leaves doctors little time either to educate or listen to their patients (Brodwin and Radovanovic, 2016).

Power and Paternalism

Doctors’ power over patients is greatest in two situations: (1) when patients are completely incapacitated by coma, stroke, or the like; and (2) when doctors’ cul- tural authority is much greater than that of their patients. For example, faced with a pregnant woman who refuses a cesarean section or a person diagnosed with schizophrenia who opposes hospitalization, courts and hospitals often sup- ports doctors’ decisions over their patients’ wishes. Finally, doctors’ power is higher when interacting with patients who don’t share the doctors’ language, culture, and social status.

Ethnicity, Class, Gender, and Paternalism

Doctors’ inclination to make decisions for patients is sometimes bolstered by doc- tors’ racist, sexist, or classist ideas (Lutfey Spencer and Grace, 2016). Doctors are not immune to common stereotypical ideas that label women as flighty, lower-class persons as lazy, and certain ethnic minorities as unintelligent or uncooperative. For example, Danielle Ofri (2013) explains that once medical students begin working on wards, they quickly learn from their medical supervisors to use the term “status Hispanicus” for any Hispanic female patient who is considered too emotional or demanding. Such attitudes can lead doctors to believe nonwhite patients are less worthy of high quality care, less willing to follow medical advice, and less able to participate in decisions regarding their own treatment (Hall et al., 2015; Lutfey Spencer and Grace, 2016).

The attitudes may help to explain ethnic and gender differences in the treat- ments that doctors offer to patients. (Far less is known about class differences.) As Chapter 3 discussed, African Americans are considerably less likely than whites to receive transplants following kidney failure. Similarly, doctors more often offer needed treatment (including angioplasty, bypass surgery, chemotherapy, and anti- biotics) to whites than to African Americans or other minorities, even when both groups have the same symptoms and insurance coverage (Gross et al., 2008; Lutfey Spencer and Grace, 2016). In addition, doctors often offer minorities only cheaper, less desirable treatments (e.g., amputating a dangerously infected leg rather than treating it with intensive antibiotic therapy). Similarly, most studies suggest that women are less likely than men to receive high-intensity treatments such as organ transplants and coronary bypasses (Anspach, 2010).

Even when doctors want to provide equal treatment and to enable patients to make their own decisions, cultural barriers can make this difficult. When doc- tors and patients come from different cultures (or different social classes), doctors

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may well find it difficult to gain patients’ cooperation or understand patients’ beliefs or wishes. Cultural differences are probably greatest when Western-born doctors treat immigrants from non-Western societies. In these circumstances, even the smallest gestures unintentionally can create misunderstanding and ill will. For example, in her observations of U.S. doctors and their Hmong patients who had emigrated from Laos, Anne Fadiman found that

when doctors conferred with a Hmong family, it was tempting to address the reassuringly Americanized teenaged girl who wore lipstick and spoke English rather than the old man who squatted silently in the corner. Yet failing to work within the traditional Hmong hierarchy, in which males ranked higher than females and old people higher than young ones, not only insulted the entire family but also yielded confused results, since the crucial questions had not been directed toward those who had the power to make the decisions. Doctors could also appear disrespectful if they tried to maintain friendly eye contact (which was considered invasive), touched the head of an adult without permission (grossly insulting), or beckoned with a crooked finger (appropriate only for animals). (1997:65) Taken together, cultural conflicts such as these may lead doctors to conclude that they can’t collaborate with such patients and so must make decisions for them.

More broadly, this example illustrates the difficulties that can arise when pa- tients lack cultural health capital. Usually the term capital refers to financial re- sources. In contrast, cultural health capital refers to cultural resources that can facilitate better health care by facilitating better relationships between patients and providers (Lutfey Spencer and Grace, 2016; Shim, 2010). Those resources can include knowledge of basic medical terms, belief in core medical ideas such as the germ theory of illness, and the ability to speak the same language as one’s doctors. In addition, cultural health capital increases when patients share their doctors’ cultural beliefs, such as the belief that patients should be willing to change their lifestyles for the sake of their health and that doctor–patient interactions should be efficient and unemotional.

Changes in the health care world have made cultural health capital increas- ingly important (Shim, 2010). Doctors now rarely have long-term relationships with patients but also rarely have enough time to learn how to communicate effectively with any new patients who have little cultural health capital. As a re- sult, working with such patients can feel more frustrating and less rewarding than working with those who have high cultural health capital, and so doctors may consciously or unconsciously choose to spend more time with the latter.

Paternalism as Process

To explore how doctors maintain dominance during their meetings with patients, researchers have conducted detailed analyses of conversation patterns between doctors and patients (Karnieli-Miller and Eisikovits, 2009). These studies show that doctors typically dominate discussions. Doctors typically indicate when to

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begin discussing a topic and when the topic is closed, and ask closed-ended rather than open-ended questions, thus making it difficult for patients to raise new topics. For example, a patient might come to a doctor complaining of various problems. The doctor will ask for further details about only some of those problems, typi- cally ignoring how patients’ work or living situations might affect their health. The doctor also can ask questions about problems the patient had not mentioned but that the doctor expects to find, thereby defining certain problems as more relevant than others.

Doctors also can reinforce their dominance by the simple tactic of referring to the patient by first name but expecting patients to refer to them by their title (“Dr. Smith”). Finally, when patients must choose between two different treat- ments or between treatment and “watchful waiting,” doctors typically present those options in ways that strongly bias the patient toward accepting whichever course of action the doctor considers best (Karnieli-Miller and Eisikovits, 2009).

Shifting Patient Roles and the Decline of Paternalism

In sum, a variety of factors continue to reinforce paternalistic patient–doctor re- lationships. Other factors, however, are changing the nature of these relationships. Most importantly, as Boyer and Lutfey (2010:S83) note, “Today’s patient role is more often chronic rather than acute; is based on risk of disease rather than ex- isting illness; and requires more active engagement by the patient in monitoring, self-educating, and self-treating over time rather than just seeking treatment from a provider on a one-time basis.”

When a patient with a high fever arrives at a hospital and is diagnosed with encephalitis, the doctor in charge will likely begin treatment immediately. In such cases, the patient may be incoherent and unable to give consent to treatment. In contrast, when patients who have lived with diabetes for a decade arrive at a doctor’s office, the patients usually have a well-honed sense of their own bodies and of which treatments work best with the fewest side effects. They also may regularly check news reports, websites, and Internet discussion boards to find out what treatments others are using. In these circumstances, communication between doctors and patients often becomes less paternalistic and more a process of nego- tiation (Boyer and Lutfey, 2010; Heritage and Maynard, 2006).

REFORMING MEDICAL TRAINING

The problems embedded in doctor–patient relationships has led to pressure for reform from both inside and outside medicine. Many doctors now believe that ris- ing rates of malpractice suits largely reflect patients’ disenchantment with doctor– patient relationships rather than with the quality of care. In fact, research suggests that even in cases of gross malpractice (such as removing the wrong rib), patients are far less likely to sue if doctors openly admit their error rather than hide behind their mask of authority. The AMA and the American Hospital Association both now encourage doctors to admit their errors to patients and their supervisors;

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hospitals that have aggressively pursued this policy have seen malpractice suits plummet (Sack, 2008a).

Similarly, throughout the United States, medical students and professors are now working to implement innovative programs for integrating more patient- centered perspectives into the medical curriculum. In the past, students typically spent their first two years studying biology and anatomy and rarely interacting with patients, but now many medical schools introduce students to patients much earlier in their training. At Dartmouth Medical School, for example, students must shadow a community physician once or twice weekly throughout their first year so they see from the start what it means to work with patients. At New York University, students spend part of their first week in medical school listening to lectures by persons living with various diseases. And at Yale Medical School, stu- dents are introduced regularly to “patients” (played by actors) whose job is to show them what illness looks like from patients’ perspective and to challenge the idea that illness is purely a biological phenomenon.

Cultural competence has also emerged as a commonly cited goal of medi- cal education and practice (Teal and Street, 2009). Cultural competence refers to the ability of health care providers to understand at least basic elements of others’ cul- tures, recognize the impact of their own cultural identity and biases on their inter- actions with clients, and thus provide medical care that better meets their clients’ emotional as well as physical needs. Research suggests that culturally competent health care increases the odds that individuals from minority communities will seek health care, feel satisfied with that care, and as a result follow their doctors’ recommendations.

The Association of American Medical Colleges, as well as numerous organi- zations representing various medical specialties, officially endorse the inclusion of cultural competence in medical training. Increasing numbers of medical students now attend lectures on cultural competence and participate in overseas programs designed to increase their understanding of other cultures (Champaneria and Ax- tell, 2004). Similarly, hospitals and community clinics increasingly are trying to meet the cultural needs of their patients through such means as inviting Hmong shamans to perform healing rituals in hospital rooms and serving traditional Korean soups to Korean patients (Brown, 2009). In the long run, such efforts may restructure medical culture and doctor–patient relationships.

IMPLICATIONS

Between 1850 and 1950, allopathic medicine attained and then enjoyed unprec- edented autonomy and dominance, becoming the premiere example of a profes- sion. In its battles for status with its many 19th-century rivals, allopathic medicine benefited from the public’s growing respect for scientific knowledge and from the increase over time in the field’s scientific foundations. It also benefited from the public’s assumption that because allopathic doctors were disproportionately upper-class white men, they must be more competent than the minorities, women, and poorer persons who dominated competing health care fields.

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Since the 1950s, however, doctors’ social status has declined, and their control over working conditions, relationships with patients, and finances has diminished. Yet doctors continue to have far more autonomy and dominance than do pro- fessionals in most other occupations, especially within the health care field. This continued professional dominance—and the continued internecine warfare be- tween medicine and other health care occupations—affects all of us as consumers of health care because it sets the stage on which attempts to improve the health care system must occur. Among other things, as Chapter 12 will show, medical dominance has made it difficult for alternative health care modalities to receive adequate research testing or for tasks to be shifted, when medically justified, from doctors to less expensive occupational groups.

Doctors’ professional socialization, too, affects all of us as consumers. In its current form, this process is lengthy, arduous, and expensive, making it difficult if not impossible for many otherwise qualified persons to become doctors and encouraging those who do become doctors to become emotionally hardened or financially driven. (In contrast, in most European nations, the government pays most of the costs of medical training.) To these unintended negative consequences of medical training must be added the problems caused by a medical culture that emphasizes emotional detachment, clinical experience, intervention, mastering uncertainty, and acute and rare illnesses rather than common and chronic illnesses.

As consumers of health care, we all benefit from the extensive training doctors receive. Those benefits, however, must be weighed against the costs we pay when our doctors also learn ways of interacting with patients and thinking about illness that can encourage overly aggressive, scientifically unjustified, or simply discour- teous treatment. Only by directly confronting the nature of medical culture can we hope to change medical training and make future doctors better able to meet their patients’ needs.

SUMMARY

1. Before the 20th century, most Americans received their health care from relatives, neighbors, or any of a variety of poorly trained and poorly respected practitioners. Allopathic doctors—the forerunners of modern medical doctors—knew little of science and received minimal training. Their use of “heroic medicine” and ignorance of antisepsis, anesthesia, and drugs left doctors as likely to harm as to heal.

2. Doctors achieved professional dominance in the health care world by the 1920s because of the public’s growing faith in science, doctors’ generally high social status, and, later, improvements in medical education. Professional dominance refers to freedom from control by other occupations or groups and ability to control any other occupations working in the same economic sphere.

3. Medicine is considered by sociologists to be a profession because (a) it has the autonomy to set its own educational and licensing standards and to police its members for incompetence or malfeasance; (b) it has technical,

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specialized knowledge unique to the occupation and learned through extended, systematic training; and (c) the public believes that doctors follow a code of ethics and are motivated more by a desire to serve than a desire to earn a profit.

4. Medical dominance is now threatened by the rise of countervailing powers, corporatization, managed care, and government oversight. It is also threatened by the decline in public support and in the AMA’s power. Yet although doctors’ professional dominance has declined since the 1950s, it remains strong.

5. Through their medical training, students learn a set of cultural norms—to value emotional detachment, trust clinical experience more than scientific evidence, master uncertainty, adopt a mechanistic model of the body, trust intervention more than normal bodily processes, and prefer working with patients who have rare or acute illnesses rather than those who have common or chronic illnesses.

6. Medical culture teaches a paternalistic value system in which only doctors are presumed capable of making decisions about what is best for a patient, especially if the patient is female, poor, elderly, or minority. Doctors maintain their power when talking with patients by such tactics as asking only close- ended questions, cutting off questions from patients if the doctors consider them irrelevant, and calling patients by their first names while expecting patients to refer to them by their title.

7. Many medical schools have adopted programs to integrate more humanistic perspectives into the curriculum. Schools have focused especially on developing medical students’ cultural competence: the ability to understand and work with at least basic elements of others’ cultures.

REVIEW QUESTIONS

1. What is the difference between allopathic and homeopathic doctors?

2. What was medical training like in 1850?

3. What could a doctor offer his patients in 1850? In 1900?

4. What does it mean to say that an occupation is a profession?

5. How did doctors achieve professional dominance? What factors have reduced doctors’ professional dominance?

6. What are the major medical norms, how do doctors learn them, and how do they affect doctor–patient relationships?

7. What is cultural competence, and why is it important?

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CRITICAL THINKING QUESTIONS

1. What factors have helped doctors gain power in American society? What factors are causing them to lose power? On balance, is the power of doctors growing or shrinking?

2. Identify two concepts that you have learned in this course so far and explain why medical students need to be taught these concepts.

3. What is cultural competence? Why is it important, and how might medical schools teach it?

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LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Identify the factors that helped osteopathy and dentistry gain acceptance as professions.

● Assess the factors that have limited nursing’s ability to obtain full professional status, both historically and currently.

● Describe the consequences of medical dominance for alternative health care providers.

For more than a decade, Juliana van Olphen-Fehr ran an independent practice as a nurse–midwife delivering babies in women’s homes. In the following story, she gives us a sense of what it is like to participate in a home birth:

Late in the evening, Mona’s contractions started getting quite intense. She paced around the room while we watched. She’d sit on the toilet frequently and Dave [her husband] rubbed her back when she was on the bed . . . . We tried to encourage Dave to go take a nap but he didn’t want to leave Mona for a moment. He finally fell asleep in the bed while it was our turn to rub Mona’s back. The night moved into early morning. The clock ticked away. We walked and talked.

It’s amazing how long it takes a baby to be born. As time passes slowly, labor gives one the opportunity to reflect on the process of birth. Each contraction comes and goes, [as] the uterus gets smaller and smaller [and] the baby is massaged down further and further into the pelvis . . . . Finally, the uterus, getting more powerful as it decreases in size, pushes the baby out of its first cradle, the pelvis, through the vagina, the passageway to life, into the outside world. The mother, feeling more and more pressure, joins the uterus in its expulsive efforts. She bears down gently and involuntarily at first but then more forcefully and purposefully as the baby approaches birth . . . .

Mona’s labor built up to the point where she started to feel the urge to bear down. Her cervix was completely dilated and I felt the baby’s head low in the vagina. She squatted while she pushed during the contractions and walked during the break between them. She found it most comfortable to lean on the banister in her hallway while she pushed . . . . Dave was still behind her, supporting her hips. I encouraged her to push while I got under her to monitor the baby’s heartbeat.

Finally, the head appeared. Dave was behind Mona, sitting on the floor, I was beneath her in the front. Together we had our hands around the baby’s head, supporting it as we coaxed her to push the baby out slowly. A beautiful little boy

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was born into Dave’s and my hands. I held the baby as Dave eased Mona back onto his lap. His arms were around her as they both welcomed the baby into their arms. My birth assistant covered all three of them with blankets to keep the baby warm with their body heat. We turned the light low so the baby would open his eyes. In happy exhaustion, we sat back and through tears watched this family fall in love with each other. (Van Olphen-Fehr, 1998:111–113)

Van Olphen-Fehr’s story helps us see both why women choose to become home-birth midwives and why health care consumers might choose a nontradi- tional option like home birth. Since this story took place, however, unaffordable insurance premiums have forced virtually all nurse–midwives to abandon inde- pendent practice and to work instead only under direct physician supervision. This situation illustrates the problems faced by nonmedical health care workers in trying to achieve professional status in a system characterized by medical dominance.

In this chapter, we first look at the history of three occupations—nursing, osteopathy, and dentistry—and show how each has sought a niche for itself within mainstream health care. We then consider the history of four occupations that, to a greater or lesser extent, remain outside of mainstream health care—chiropractic, direct-entry midwifery, curanderismo, and traditional acupuncture. Chiropractic illustrates how, despite medical dominance, an alternative health care occupation can secure a role for itself primarily by limiting its services to a narrow field, and the other three examples show how occupations can remain marginal to the health care system and unable to successfully combat medical dominance.

MAINSTREAM HEALTH CARE PROVIDERS

Nursing: The Struggle for Professional Status

In everyday conversations, Americans often seem to equate health care workers with doctors. Similarly, although many sociologists have researched doctors, few have researched nurses. Yet nurses form the true backbone of the health care sys- tem, and hospital patients quickly learn that it is nurses who make the experience miserable or bearable and whose presence or absence often matters most. The history of nursing demonstrates how the drive toward professional status, or professionalization, can be especially difficult for a “female” occupation.

The Rise of Nursing Before the 20th century, most people believed that caring came naturally to women and therefore families could always call on any female relative to care for any sick family member (Reverby, 1987). Hospitals, meanwhile, relied for custodial nursing care on the involuntary labor of lower-class women

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who were either recovering hospital patients or inmates of public almshouses. These beginnings in home and hospital created the central dilemma of nursing: Nursing was considered a natural extension of women’s character and duty rather than an occupation meriting either respect or rights (Reverby, 1987). Neverthe- less, increasingly during the 19th century, unmarried and widowed women sought paid work as nurses in both homes and hospitals. Few of them, however, had any training.

The need to formalize nursing training and practice did not become obvious until the Crimean War of the 1850s when Englishwoman Florence Nightingale demonstrated that trained nurses could alleviate the horrors of war (Reverby, 1987). The acclaim Nightingale garnered for her war work enabled her subsequently to open new training programs and establish nursing as a respectable occupation.

Like most of her generation, Nightingale believed that men and women had inherently different characters and thus should occupy “separate spheres,” playing different roles in society. To Nightingale, women’s character, as well as their duty, both enabled and required them to care for others. She thus conceived of caring as nursing’s central role. In addition, because her war work had convinced her of the benefits of strict discipline, she created a hierarchical structure in which nurses and nursing students would follow orders from their nursing supervisors. This structure, she hoped, would provide nurses with a power base within women’s separate sphere that would be parallel to that of doctors within their sphere. These principles became the foundation of British nursing. A few years later, when the U.S. Civil War made the benefits of professional nurses obvious to Americans, these principles were also adopted by American nursing.

Nurses first won the respect of the American public during the Civil War.

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By the early 20th century, hospital administrators discovered that running a nursing school gave a hospital ready access to cheap labor, so hospitals across the nation began opening such schools. Within these hospital-based schools, education was secondary to patient care, and many schools had neither paid instructors nor libraries. Students worked on the wards for 10–12 hours a day, with work assign- ments based on hospital needs rather than on educational goals. Formal lectures or training, if any, occurred only after other work was done.

This exploitative training system stemmed directly if unintentionally from the Nightingale model and its emphasis on caring and duty. As historian Susan Reverby (1987:75) notes, “Since nursing theory emphasized training in discipline, order, and practical skills, the ideological justification explained the abuse of stu- dent labor. And because the nursing work force was made up almost entirely of women, altruism, sacrifice, and submission were expected and encouraged.”

Those women who, by the beginning of the 20th century, sought to make nursing a profession by raising educational standards, establishing standards for licensure or registration, and improving the field’s status found their hands tied by the nature of the field (Malka, 2007; Reverby, 1987). According to Reverby, to raise its status, nursing reformers

had to exalt the womanly character and service ethic of nursing while insisting on the right of nurses to act in their own self-interest, yet not be “unladylike.” They had to demand higher wages commensurate with their skills and position, but not appear “commercial.” Denouncing the exploitation of nursing students as workers, they had to forge political alliances with hospital physicians and administrators who perpetrated this system of training. While lauding character and sacrifice, they had to measure it with educational criteria in order to formulate registration laws and set admission standards. In doing so, they attacked the background, training, and ideology of the majority of working nurses. Such a series of contradictions were impossible to reconcile. (1987:122)

Political weaknesses also hamstrung nurses’ attempts to increase their status. Like other women, few white nurses could vote until 1920, and most nonwhite nurses could not do so until considerably later. Moreover, nurses faced formidable opposition from doctors and hospitals that feared losing control over this cheap workforce. Nevertheless, by the 1920s, most states had adopted licensing laws for nursing schools and nurses. But most laws were weak and poorly enforced, so nurses’ status remained somewhat marginal until World War II (Judd, Sitzman, and Davis, 2009; Malka, 2007).

Rising Education and Professional Status Since World War II, nursing leaders have focused on increasing educational requirements for entering nursing as a means of achieving professional status (Judd et al., 2009; Malka, 2007). Beginning in the 1960s, the American Nurses Association promoted the development of two- and four-year college-based nursing programs and lobbied to make college education a requirement for nursing. The new college-based programs quickly

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proved popular because changing social norms encouraged women to seek a col- lege education in the hopes of improved employment opportunities.

This emphasis on higher education has reinforced nursing’s hierarchical struc- ture. At the bottom of the hierarchy are nursing assistants (described in Chapter 10) and licensed practical nurses (LPNs), who receive at most one year of classroom and clinical training and who provide mostly custodial care to patients. Neither nursing assistants nor licensed practical nurses have the autonomy, status, or independent knowledge base that sociologists consider crucial for meeting the definition of a profession, nor is it likely that they will ever do so.

The situation is more complex for registered nurses (RNs), individuals who have received at least two years of nursing training and met national licensure requirements. In past decades, most RNs received their training through hospi- tal-based programs unaffiliated with colleges or universities. These days, most RNs still hold only associate’s degrees in nursing from community colleges, but an increasing number hold bachelor’s degrees in nursing from four-year colleges or universities. Around half of employers now require new hires to have at least four- year degrees, and virtually all prefer to hire such nurses (American Association of Colleges of Nursing, 2017).

Without a doubt, these nurses enjoy more autonomy and status than in the past (Malka, 2007). Many large hospitals now have a director of nursing who makes largely independent decisions regarding the nursing staff and whose status is parallel to that of the director of medicine. Meanwhile, in many wards, nurses and doctors work together in relatively egalitarian teams; this is especially true in emergency departments, intensive care units, and operating rooms, where quick decisions and good rapport between doctors and nurses are crucial (Carmel, 2006).

Continuing Daily Struggles Despite the increasing autonomy that rising levels of education have brought, asserting professional status remains a daily struggle for many nurses (Gordon, 2005). Doctors continue to determine much of nurses’ everyday working conditions: who works when, where, and for how much money. And doctors sometimes include abusive treatment as part of these conditions: In one recent survey, 74% of nurses reported demeaning comments or insults from doctors, and 26% reported that doctors had thrown objects at them in the last year (Robbins, 2015).

Even when doctors don’t abuse nurses, they often underscore the status dif- ference between them (Gordon, 2005). Most doctors expect to be referred to by their title—“Dr. Smith”—while referring to nurses by their first names or simply as “my nurse.” They rarely read nurses’ notes on patients’ charts, eat with nurses in hospital cafeterias, include nurses in discussions on hospital rounds, or invite nurses to important meetings about patients. Meanwhile, in what is referred to as the doctor–nurse game, experienced nurses are still expected to subtly instruct inexperienced doctors in how to treat patients without revealing the doctors’ ignorance to onlookers (Gordon, 2005). For example, an experienced surgical nurse might subtly suggest what the doctor should do by placing certain instru- ments on the table or by telling the patient step by step what the doctor is about to do. Similarly, nurses often do the work of doctors—prescribing drugs, tests, or

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physical therapy—when doctors are unavailable, but the doctors often reinforce their own status by telling others that the nurses are simply following the doctors’ known preferences. Even when patients’ lives are saved by nurses’ quick actions, doctors typically receive the credit from patients, administrators, and other doctors (Gordon, 2005).

Changing Gender Roles and Professionalization One important factor that may affect nursing’s ability to gain professional status is the changes in gender roles in the broader society. Since the 1980s, as women gained entry to other fields, in- telligent and motivated women increasingly chose to enter medicine, pharmacy, or biological research instead of nursing (New York Times, 1999). For the same reason, nursing attracted fewer white students and middle- or upper-class students.

That said, the economic downturn that began in 2008, coupled with changes in gender roles, has increased nursing’s appeal for men as well as women. Currently, men make up around 11% of registered students in bachelors and master’s degree programs in nursing (Auerbach, 2017). Because nursing is so strongly identified with femininity, working as a nurse presents men with a serious conflict between their gender identity and their work identity. Men typically respond to this con- flict by stressing the differences between what they do and traditional nursing— deemphasizing nurturing while emphasizing their technical skills, quick thinking, or use of physical strength. As a result, men are disproportionately represented in areas considered “masculine” such as operating rooms and emergency departments and underrepresented in areas such as pediatrics (Snyder and Green, 2008).

Structural Changes and Professionalization Structural changes in health care have also affected nurses’ lives and professional status. Since the 1970s, corporati- zation and the resulting emphasis on cost control have resulted in worse working conditions and decreased job satisfaction for most hospital-based nurses. To save costs, hospitals try to release patients before their insurance coverage ends, leaving only the sickest patients in the hospital. Yet to keep their staffing costs as low as possible, hospitals now hire considerably fewer RNs per patient than they used to (Gordon, 2005). Thus, the typical hospital ward now has fewer nurses but sicker patients than in the past. As a result, nurses’ satisfaction has declined while deaths and injuries among patients have risen (American Nurses Association, 2014).

Other changes have also worsened nurses’ position. First, because RNs can perform more tasks more efficiently than LPNs, hospitals now save money by assigning RNs many of the labor-intensive, menial tasks formerly performed by LPNs. Because RNs remain responsible for many administrative and skilled tech- nical tasks, this shift has both deprofessionalized their daily work and dramatically increased their workload (Aiken, Sochalski, and Anderson, 1996; Brannon, 1996; Gordon, 2005). Second, hospitals increasingly save money by hiring nurses tem- porarily and without benefits or by moving full-time nurse employees from ward to ward as needed. As a result, nurses have considerably less control than in the past over their schedules and the nature of their work, and they are less able to choose the people they will work with. Third, hospitals have saved costs by shifting ser- vices from inpatient wards to less expensive outpatient clinics, where fewer RNs

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are needed, RN salaries are lower, and their work is less prestigious (Norrish and Rundall, 2001). Fourth, nurses are increasingly pressured to work back-to-back shifts and longer hours (often unpaid). Taken together, these factors have resulted in high dropout rates from nursing careers (Gordon, 2005).

Advanced Practice Nursing and Professional Status Although most nurses continue to struggle for professional status, few would doubt that advanced practice nurses have achieved it. These nurses typically hold master’s degrees that license them to work as nurse–anesthesiologists, as nurse–practitioners, or in other specialized fields. Since 2015, however, all new advanced practice nurses must earn a doctorate in nursing practice. In addition, nurses who want to work as nursing professors or researchers must earn a different sort of doctorate that focuses on research training.

The number of doctoral-trained nurses has soared over the last decade. These nurses now run their own classrooms, laboratories, research journals, research grants, and licensing boards; generate knowledge parallel to that generated by medical doctors; earn substantial salaries; enjoy autonomy, status, and public re- spect similar to that of other professionals; and have the legal right to call them- selves doctors. Moreover, around half of the states allow them to prescribe at least some medications and to work essentially as primary care providers. This au- tonomy and status is justified by numerous research studies published in major medical journals that have found care provided by advanced practice nurses to be as good as or better than that provided by doctors (Mundinger et al., 2000; Sakr et al., 1999).

Not surprisingly, however, the American Medical Association (AMA) is fight- ing against this trend and fighting to maintain its dominance (Harris, 2011). The case of nurse–midwifery illustrates these pressures. Nurse–midwives are registered nurses who additionally earn nationally accredited graduate degrees in midwifery. The earliest nurse–midwives, beginning in the 1920s, practiced primarily in poor or rural areas with few doctors and enjoyed considerable autonomy. Beginning in the 1960s, a growing number of nurse–midwives worked largely independent of doctors in homes and clinics, providing a true alternative to medicalized child- birth. These days, however, changes in insurance costs and regulations (supported by doctors) have made it virtually impossible for nurse–midwives to work inde- pendently. Almost all nurse–midwives now attend deliveries only in hospitals and only when doctors expect the delivery to be routine, uninteresting, and poorly paid. Yet research indicates that care by nurse–midwives (at home or in hospitals) is at least as safe as care by doctors in hospitals (Sandall et al., 2013). In fact, Britain’s National Health Service declared in 2014 that it was safer for healthy women to deliver at home or in a birth center with a nurse–midwife than with a doctor in a hospital (Bennhold and Saint Louis, 2014).

On the other hand, nurse–midwives have legal authority to practice and to write prescriptions in all 50 states. The majority of states require private health insurers to reimburse nurse–midwives for their services, and all states reim- burse midwives for serving Medicaid clients. In 2014, nurse–midwives attended 8% of all U.S. births (American College of Nurse-Midwives, 2016). In sum,

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nurse–midwives have gained considerable autonomy and public recognition as well as an established place for themselves in the health care system. Their ability to gain greater professional status and independence from medical control, however, remains restricted.

Osteopathy: A Parallel Profession

Osteopathy exemplifies a health care occupation that has achieved professional status almost equal to that of medicine. Osteopaths function as parallel prac- titioners, performing basically the same roles as allopathic doctors while re- taining professional autonomy and at least remnants of a fundamentally different ideology about illness causation (Gevitz, 1988). The history of osteopathy demon- strates the benefits and costs of gaining professional status in the face of medical dominance.

Nineteenth-Century Roots Osteopathy was founded by Andrew Taylor Still, a self-taught allopathic doctor (Miller, 1998). In 1864, three of his children died from meningitis. These deaths, coupled with his belief that all drug use was im- moral, provoked Still to investigate alternatives to allopathic medicine. The system Still eventually developed drew on the popular contemporary concept of “mag- netic healing” (Miller, 1998). Magnetic healers theorized that an invisible mag- netic fluid flowed through the body and that illness occurred when that flow was obstructed, unbalanced, inadequate, or excessive. They believed that by moving their hands along patients’ spinal cords, they could correct problems in the mag- netic fluid and thus cure illness. Still adopted this theory essentially intact, although he attributed health and illness to problems in the flow of blood rather than the flow of magnetic fluid.

During the next few years, Still also studied the work of local bonesetters, whose work consisted primarily of setting broken and dislocated bones and joints and secondarily of treating joint problems through extending and manipulating limbs. Still’s experiences convinced him that such manipulations could cure a wide variety of illnesses.

Combining magnetic healing and bonesetting, Still concluded that disease occurs when misplaced bones, especially in the spinal column, interfere with the circulation of blood. He named his new system of spinal manipulation osteopathy, from the Greek words for “bone” and “sickness.” After the germ theory of disease became widely accepted, Still incorporated it into his theory by arguing that spinal problems predispose individuals to infections and that correcting spinal problems can help the body fight infection. To date, no research has demonstrated clearly whether osteopathic treatment has any effect, whether positive or negative. (The same, of course, can be said for most drugs and procedures used by allopathic doc- tors, as we saw in Chapter 11.)

Professionalizing Osteopathy In 1892, Still established the American School of Osteopathy and began accepting students for a four-month course of instruction. Five years later, in 1897, he helped found the American Osteopathic Association

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(AOA). The AOA fought hard to obtain professional recognition and autonomy for the field through increasing educational standards and gaining state approval for independent osteopathic registration boards. In addition, like the AMA and organizations for other emerging professions, the AOA adopted a code of ethics to help convince the public and the state that its practitioners were reputable. Such codes of ethics still play a role in maintaining the reputations of professions and in policing the behavior of professionals as “Ethical Debate: Pharmacists and Conscience Clauses,” p. 286, discusses.

The AOA’s fight for professional recognition proved highly successful. By 1901, and despite strong opposition from doctors and medical societies, 15 states legally recognized osteopathy. By 1923, osteopathic colleges required as many years of education as medical colleges, and all but two states licensed osteopaths. Nevertheless, although threats from allopathic medicine have failed to eliminate osteopathy, changes from within raise questions about its future as an indepen- dent field. By the 1920s, most osteopaths had concluded that to compete with allopathic doctors, they would have to offer a similar range of patient services. As a result, osteopaths increasingly treated patients with acute illnesses as well as those with chronic illnesses. In addition, osteopathic colleges continued to teach spinal manipulation but added courses in surgery and obstetrics, often taught out of medical textbooks. By the end of the decade, in a major break with its founder, the AOA mandated that osteopathic colleges provide a course in “supplementary therapeutics,” including drugs. Thus, osteopathy began moving toward a merger with allopathic medicine (Miller, 1998).

Despite these changes, many allopathic doctors still disdained osteopaths. Al- though osteopathic education had improved, it had not kept up with the changes in allopathic education, leading many states to grant only restricted privileges to osteopaths. To combat this problem, the AOA adopted a series of reforms between 1935 and 1960, including requiring three years of college for admission to osteo- pathic colleges; improving the curriculum, facilities, and faculty at those colleges; and strengthening internship programs at osteopathic hospitals. Because of these changes, osteopaths had received unrestricted privileges to practice in 38 states by 1960.

The Waning of Osteopathic Identity Despite these reforms, osteopaths still lacked the professional autonomy and status of allopathic doctors, who outnum- bered them by at least 20 to 1 throughout the 1900s. This situation led osteopaths in California, the state where osteopathy was most entrenched, to strike a bargain in 1962 with their allopathic counterparts. Ninety percent of California oste- opaths agreed to dissolve their ties with the AOA, stop using their osteopathic degrees, and accept new medical degrees. The California osteopathic hospitals and colleges agreed to become allopathic institutions, and the state osteopathic orga- nization agreed that the state would stop issuing osteopathic licenses.

Although at the time many osteopaths worried that this move would weaken osteopathy, the reverse proved true (Gevitz, 1998). Many allopathic and osteo- pathic doctors alike opposed the merger, making any further mergers unlikely. In addition, the continuing professional problems of the former California osteopaths convinced osteopaths elsewhere that merging wouldn’t end their problems. Thus,

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interest in pursuing a broader merger did not develop. Meanwhile, both federal and state legislators and regulators interpreted AMA support for the merger to mean that osteopathic and allopathic doctors were essentially equivalent. Partly as a result, by the 1970s, osteopaths had received unrestricted privileges in all 50 states and now have essentially the same relationship with insurance providers as do allopathic doctors. The number of osteopaths practicing in the United States has more than doubled since the 1980s.

Osteopathy, then, no longer faces serious threats from the outside. Its existence remains threatened, however, by its success (Miller, 1998). Like allopathic doctors, osteopaths must complete a residency to become specialists. Graduates from os- teopathic schools must meet the same standards as graduates of allopathic schools to obtain a residency—a change that may well move the two fields closer (Berger, 2014). Meanwhile, although osteopaths occasionally use spinal manipulation, they generally use the same treatment modalities as allopaths. As a result, ties among osteopaths have faded while those to allopathic doctors have grown. At the same

Pharmacists and Conscience Clauses

Sarah Johnson works as a pharmacist in a chain drug store in rural Washington state. She loves having the opportunity to help people deal with their health problems and enjoys her status as a competent, valued professional. Recently, though, her manager told her that she must stock and dispense Plan B, a drug that can be used after unprotected sex to prevent pregnancy by either preventing sperm from fertilizing an egg or (much less often) preventing a fertilized egg from implanting in a woman’s uterus. Because federal regulations now allow Plan B to be sold without a prescription to anyone over age 17 but require pharmacists to keep it behind the counter, as the store’s pharmacist she would have to physically hand the drug to any customers who request it and would have full responsibility (unmediated by a doctor) to instruct them in using it.

To many Americans, Plan B is a lifesaver that protects individuals from unwanted pregnancies (including those caused by rape). To others, it’s a life killer. Although many people who oppose abortion believe that life doesn’t start until after a fertilized egg is implanted in the uterus, others believe that life begins as soon as an egg is fertilized. To these individuals, Plan B is just another form of abortion, and abortion is just another form of murder. Moreover, Plan B seems particularly reprehensible to them because it allows individuals to end pregnancies quickly, cheaply, and safely, thus making abortion far more palatable and feasible than it might otherwise be.

Since abortion was legalized by the U.S. Supreme Court in 1973, most states have passed “conscience clauses” that permit health care students and professionals to opt out of learning or performing abortions or other tasks (such as sterilization or physician- assisted suicide) that they consider unethical (Berlinger, 2008). More recently, pharmacists and others who oppose abortion have successfully pressed some states to pass conscience clauses that allow pharmacists to opt out of personally providing any drugs they consider unethical. Conversely, other states have passed laws that, at a minimum, require pharmacists to inform customers of other pharmacies that do stock and sell these drugs.

Pharmacists who believe on religious grounds that Plan B causes abortions and is therefore immoral argue that forcing them to provide the drug goes against their right

ETHICAL DEBATE

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time, the virtual elimination of differences between allopathic and osteopathic treatment and theory has reduced osteopaths’ sense of a strong separate identity.

On the other hand, the growth of the consumer health movement and the rise of interest in alternative medicine have given a new burst of life to osteop- athy. Since 1980, the number of osteopathic schools has doubled, and several are now based in state universities (Berger, 2014). Modern consumers are increasingly sympathetic to osteopaths’ orientation toward patient care, which in general is more holistic and humanistic than that found among allopathic doctors. In addi- tion, consumers increasingly have sought less interventionistic treatments, such as osteopathic manipulation, either instead of or in addition to allopathic treatment. Osteopaths also pride themselves on their commitment to serving poorer popula- tions, which is stressed far more in osteopathic schools than in allopathic schools (Berger, 2014).

In sum, the history of osteopathy demonstrates the benefits of achieving full professional status. It also shows the difficulties a parallel health care profession can

to religious freedom (Flynn, 2008:105). Even if not phrased as a religious belief, they argue, professionals must have the right to refuse work that they consider unethical: If, for example, we expect military doctors to refuse orders to aid torturers, we should also not only allow but also expect pharmacists to refuse orders that they believe aid murderers.

Other critics, however, argue that such refusals by pharmacists go against pharmacists’ professional code of ethics (Flynn, 2008:105). According to the American Pharmacists Association’s code, pharmacists are expected to “respect the autonomy and dignity of each patient.” When a pharmacist refuses to dispense a drug that a customer requests, that pharmacist is implicitly deciding what is best for the customer and imposing his or her own moral and religious view on that customer. Moreover, in rural areas, and especially for poor customers who lack ready transportation, refusing to provide a drug may make it difficult or even impossible for a customer to obtain the drug in a timely manner (Berlinger, 2008).

In these situations, the integrity, autonomy, and religious freedom of customers and pharmacists are necessarily at odds.

Sociological Questions

1. What views about health care and health care professionals are reflected in the American Pharmacists Association’s position on the duty to treat?

2. What social views and values about medicine, society, and the body are reflected in the debate over pharmacists and conscience clauses? Whose views are these?

3. Which social groups are in conflict over this issue? Whose interests are served by requiring pharmacists to dispense drugs? By allowing them to refuse to do so?

4. Which of these groups has more power to enforce its view? What kinds of power do they have?

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face in maintaining an independent identity when it no longer faces discrimina- tion from the medical world and when the ideological justification for its separate existence wanes.

Dentistry: Maintaining Independence

Like osteopathy, dentistry has maintained a professional status nearly equal to that of medicine. Unlike osteopathy, though, dentistry’s independent identity and status have remained intact over the decades (Otto, 2017). Dentists face little if any chal- lenge from doctors over their sphere of influence, and they maintain considerable control over the dental hygienists who work under them.

Building a Profession A main reason for dentistry’s independence is that, un- like osteopathy, it is not a parallel occupation (Otto, 2017). Rather, from the start its focus has been on oral health, an area that medical doctors lost interest in by the early 20th century. As a result, it posed little threat to the medical profession’s territorial ambitions. Moreover, dentistry did not challenge core medical beliefs about scientific research or about the causes of health and illness (such as belief in the germ theory of illness). Similarly, although dentistry moved into universities more slowly than medicine did, by the 1930s all dental education was provided at fully accredited universities (Schulein, 2004). As a result, doctors were less inclined to attack dentistry than they were to attack faith healers and others who rejected their basic beliefs and knowledge.

It also helped that by the early 20th century dentistry was dominated by middle- class white men (Adams, 1999). As a result, dentists and doctors brought equal social status to any legal battles during the early period of professionalization. In addition, the American Dental Association was founded just a few years after the AMA, so dentists had a group to fight on their behalf by the time the AMA began actively challenging the legal status of other competing health care occupations. Partly as a result, almost all dentists were—and still are—trained at schools of den- tistry that are independent of medical schools (Otto, 2017).

A Profession Apart By the mid-20th century, dentistry, like medicine, was an accepted and respected profession. The fact that, by this point, dentists needed four years of college and four years of postgraduate education before they could prac- tice certainly helped their status. (Dentists would also need two or three years of internship training to enter the subspecialties that emerged later in the century.) In addition, dentists’ status was augmented by their growing expertise. In earlier eras, dentists could only extract broken, infected, or eroded teeth. By the mid- 20th century, however, dentists could fill cavities, make crowns for teeth, prevent cavities through cleaning and fluoride treatments, craft bridges, surgically implant replacement teeth, and straighten teeth. All these developments not only increased the scope of dental practice but also added to dentists’ prestige (and incomes).

In one important way, though, the fates of dentists and doctors diverged. In 1965, Medicare and Medicaid were founded to provide affordable health care to the poor, the disabled, and the elderly. Dental care was not included in either

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program, as it was considered less necessary than medical care and costs were low enough that many individuals could afford to purchase it on their own. In addi- tion, the American Dental Association opposed adding dental coverage to Medi- care, although they supported adding it to Medicaid to provide poor children with preventive care (Otto, 2017; Waldman, Truhlar, and Perlman, 2005). Cur- rently, Medicare rarely covers dental care, Medicaid covers it only for children, and most dentists refuse to treat Medicare and Medicaid patients anyway. Conse- quently, most Americans either pay for dental care out of pocket or go without (Otto, 2017).

Dentists are considerably more likely than doctors to work in private prac- tices. Their median income of around $160,000 is far below that of doctors, but they work fewer hours and enjoy considerably more autonomy (Bureau of Labor Statistics, 2017). Similar to doctors, many have increased their incomes and auton- omy by offering cosmetic procedures, which are neither covered nor regulated by insurance companies (Exley, 2009; Otto, 2017). In addition, they have protected their income by lobbying hard against any proposals to allow dental hygienists and dental therapists to expand their roles; in other nations, such practitioners are allowed to clean teeth, apply sealants to protect against tooth decay, and even to drill cavities and extract teeth at much lower prices than dentists charge (Jordan, 2017; Nash, 2012). These conditions make dentistry an appealing occupation, and the number of dental schools has increased over the years (Hoover, 2014).

ALTERNATIVE HEALTH CARE PROVIDERS

The occupations described to this point all basically share allopathic medicine’s understanding of how the body works, and all enjoy significant roles within the mainstream health care system. The occupations described in the remainder of this chapter are sufficiently divorced from mainstream American medicine to be con- sidered alternative or complementary therapies—neither taught in medical schools nor widely used by doctors, even if they sometimes are covered by health insurance.

With a few exceptions (such as chiropractic, direct-entry midwifery, and acu- puncture), little is known about the effectiveness of alternative healing techniques, which include meditation, reflexology, faith healing, herbal therapies, and colonics. Because allopathic medicine has dominated the American health care system for so long, researching alternative therapies has been all but impossible. Scientific testing requires large investments of time and money, which are generally only available from the government, universities, or pharmaceutical companies. Until recently, researchers who wanted to study alternative techniques found it nearly impossible to obtain funding, especially from pharmaceutical companies, which have no reason to fund research on herbs or techniques they can’t patent. In ad- dition, researchers who studied these techniques faced great difficulties in getting their results published in the prestigious medical publications that set the standards for health care practice.

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In 1992, however, and in a major break with past policy, the U.S. Congress voted to establish within the National Institutes of Health a unit now known as the National Center for Complementary and Alternative Medicine. The major impetus for this legislation came from former California Congressman Berkley Bedell, who had experimented with alternative therapies after his doctors diag- nosed him with terminal cancer. His apparently successful experiences convinced him that such treatments warranted wider study and use. Bedell’s success in getting this legislation passed reflects legislators’ recognition of both the soaring costs of mainstream medical care and the growing public interest in alternative health care.

Interest in alternative healing is growing not only among American consumers but also among allopathic doctors. Most medical schools now require some course- work in alternative medicine—often called integrative medicine in the medical world (Loviglio, 2005)—and many students choose to take electives in the area as well. In addition, growing numbers of doctors attend conferences and workshops on alternative therapies or even run alternative therapy centers at major hospitals and medical schools (Baer, 2010).

In the rest of this chapter, we examine four alternative health care occupa- tions. The first two, chiropractic and lay midwifery, at least sometimes use the lan- guage of science to justify their work. The other two occupations, curanderismo and traditional acupuncture, draw on traditional beliefs unrelated to the Western scientific worldview.

Chiropractors: From Marginal to Limited Practitioners

Unlike osteopaths, chiropractors have fully retained their unique identity. The history of chiropractic illustrates how marginal practitioners, who treat a wide range of physical ailments and illnesses but have low social status, can become, like podiatrists, optometrists, and dentists, limited practitioners—nonmedical health care workers who gain greater social acceptance by confining their work to a limited range of treatments and bodily parts (Wardwell, 1979). “Key Concepts: Limited and Marginal Health Care Occupations,” illustrates this distinction.

Early History The roots of chiropractic closely mirror those of osteopathy. Chi- ropractic was founded in 1895 by Daniel David Palmer, who coined the term from the Greek words for “hand” and “practice.” Like Still, the founder of osteop- athy, Palmer studied magnetic healing and spinal manipulation and concluded that

Limited and Marginal Health Care Occupations

Limited Range of Care

Yes No

Marginal social position

Yes Lay midwives Traditional healers

No Chiropractors Allopathic doctors

KEY CONCEPTS

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spinal manipulation could both prevent and cure illness. However, Still argued that spinal problems foster disease by restricting blood flow, whereas Palmer argued that spinal problems foster disease by restricting nerves.

In 1896, Palmer founded the first chiropractic school to teach his techniques of spinal manipulation. By 1916, around 7000 chiropractors had opened practices; by 1930, that number had more than doubled as schools opened around the coun- try (Wardwell, 1988:159, 174).

The Fight Against Medical Dominance The American medical establishment greeted the emergence of chiropractic with the same hostility it had demonstrated toward osteopathy. To eliminate these competitors, the AMA and its regional or- ganizations during the 1930s and 1940s filed lawsuits—many of them successful— against more than 15,000 chiropractors for practicing medicine without a license.

To further restrict chiropractic, the AMA pressed for legislation requiring prospective chiropractors to pass statewide basic science examinations written by allopathic-controlled boards. Ironically, this requirement strengthened rather than weakened chiropractic by forcing the field to raise its previously low edu- cational standards. (As with early allopathic and osteopathic schools, early chiro- practic schools accepted essentially all who could pay tuition and offered only a few months of training.) Standards improved most dramatically during the 1940s when the National Chiropractic Association established accrediting standards for schools and tuition money from veterans studying chiropractic under the federal GI Bill provided the funds schools needed to meet those standards. Since 1968, all chiropractic schools have required two years of college for admission, and most states require four years of chiropractic schooling for licensure.

Similarly, chiropractic in the end benefited from allopathic medicine’s legal war against it. When Medicare first began in 1965, Congress bowed to pressure from the AMA and voted that Medicare would not cover services by chiroprac- tors (or by clinical psychologists, social workers, physical therapists, and others in competition with doctors). Outraged chiropractic patients responded with a mas- sive public letter-writing campaign that led Congress in 1972 to pass legislation extending Medicare coverage to chiropractic services despite the lack of scientific research available at the time on its effects. This set the stage for state legislatures to require other insurance plans to reimburse for chiropractic care, at least in certain situations (Wardwell, 1988:179).

In 1974, the last of the 50 states passed legislation licensing chiropractors. Yet organized medicine continued to limit the ability of chiropractors to practice freely. In addition to fighting legislation designed to allow chiropractors to receive private insurance reimbursement, the AMA banned contact between chiropractors and allopaths, making it impossible for chiropractors and allopaths to refer patients to each other. In response, chiropractors and their supporters filed antitrust suits in the late 1970s against the AMA, various state medical associations, the American Hospital Association, and several other representatives of organized medicine (as well as the AOA), alleging that these organizations had restrained trade illegally. Chiropractors and their defenders eventually won or favorably settled out of court every suit. As a result, overt opposition to chiropractic ended.

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Current Status These changes have allowed chiropractors to solidify their social position. One recent national random survey found that 8.5% of U.S. residents had used chiropractic (or osteopathic) manipulation in the previous 12 months (Peregoy et al., 2014). (This survey did not differentiate between chiropractors and osteopaths, but a parallel survey conducted in 2002 found that 7.5% reported using chiropractors alone.) Public interest in chiropractic continues to increase, and the job outlook is much better than for most occupations. Around 45,000 chiropractors work in the United States, most in solo or group practice (Bureau of Labor Statistics, 2017). The mean annual income for chiropractors is $67,000— considerably below physicians’ incomes but for a much shorter workweek and with considerably less and less expensive education required to enter the field (Bu- reau of Labor Statistics, 2017). These figures alone suggest chiropractic’s success.

That success, however, is bounded by chiropractors’ status as limited practi- tioners. Insurers now often pay for chiropractic services—approximately half of the people who use chiropractic services have full or partial coverage—but usually will do so only for treating specific conditions in specific ways (Tindle et al., 2005). State licensure laws sometimes set similar limits, as does patient demand: Despite many chiropractors’ desire to treat a broader range of problems, most patients visit them solely for treatment of acute back, head, or neck pain. In addition, only 5% of chiropractic patients were referred by a medical doctor, clearly indicating that doctors don’t regard chiropractors as colleagues (Mootz et al., 2005).

Nevertheless, chiropractors continue to push for a wider role in health care. Many chiropractors believe spinal problems underlie all illness and that spinal ma- nipulation can cure most health problems from asthma to cancer. As a result, they believe they can serve effectively as primary care providers and now advertise heavily that they offer care for the whole family throughout the life course. This has stimulated new conflicts with mainstream medicine, especially because a signif- icant minority of chiropractors oppose medical treatments, drugs, and vaccination (Campbell, Busse, and Injeyan, 2000). “Contemporary Issues: Vaccine Refusal,” p. 293, discusses the risks incurred when children are not vaccinated.

Current research suggests that chiropractic care may provide slight help to those with acute lower back pain but is unlikely to help others (Cherkin et al., 1998; Hadler, 2008). Nor does it seem likely that future research will identify more benefits given that the basic principles of chiropractic simply don’t mesh with scientific understandings of human biology.

Direct-Entry Midwives: Limited but Still Marginal

The history of direct-entry midwifery shows the difficulties members of an oc- cupation face in gaining acceptance as limited practitioners when the occupation draws only from socially marginal groups—in this case, women, often from mi- nority groups. Although until the 20th century, direct-entry midwives (i.e., midwives who lack nursing degrees) delivered the majority of American babies, they now deliver less than 1% (Martin et al., 2007). In this section, we consider how these changes came about and how direct-entry midwives have attempted to regain their lost position.

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The Struggle to Control Childbirth Until well into the 19th century, Amer- icans considered childbirth solely a woman’s affair (Wertz and Wertz, 1989). Al- most all women gave birth at home attended by a direct-entry midwife or by female friends or relatives. Although a few local governments during the colonial era licensed midwives, licensure laws did not survive past U.S. independence, so anyone who wanted to call herself a midwife could practice essentially without legal restrictions. Unlike nurse–midwives, who did not exist until the 20th cen- tury, these direct-entry midwives had no formal training but learned their skills through experience and sometimes through informal apprenticeships. Typically, they served only women from their own geographic or ethnic community. Doc- tors (all of whom were men) played almost no role in childbirth because Ameri- cans suspected the motives of any men who worked intimately with female bodies (Wertz and Wertz, 1989:97–98). Moreover, doctors had little to offer childbearing women beyond the ability to destroy and remove the fetus when prolonged labor threatened to kill the mother. Midwives, meanwhile, could offer only patience, skilled hands, and a few herbal remedies.

CONTEMPORARY ISSUES

Vaccine Refusal

As generational memories of measles and other infectious disease epidemics have faded, growing numbers of parents have decided against vaccinating their children (Omer et al., 2009; Reich, 2018; Steinhauer, 2008). These decisions may stem from Internet rumors, religious or philosophical beliefs, or skepticism regarding modern medicine (sometimes fueled by chiropractors). Although scientific support for vaccination is overwhelming (Roush et al., 2007; Stratton, Wilson, and McCormick, 2002), parents and practitioners may nonetheless question the safety of vaccinating young children with dead or weak strains of disease-causing viruses. Others believe in vaccination but question the wisdom of simultaneously injecting children with multiple vaccinations. Still others believe—based on an article published in the prestigious British Medical Journal that was later proved fraudulent—that vaccination can somehow cause autism (Godlee, Smith, and Marcovitch, 2011; Reich, 2018; Steinhauer, 2008).

The rise in vaccine refusal has led to outbreaks of measles and other diseases in the past few years. In the first six months of 2017, for example, more than 100 Americans (most of them unvaccinated) fell ill with measles (Centers for Disease Control and Prevention, 2017). Although a disease such as measles, for example, may seem to be merely a nuisance, some who become infected develop ear infections, pneumonia, and encephalitis, and some of the infected become permanently deafened or even die as a result. Moreover, whenever an unvaccinated child becomes infected with a disease, he or she can spread the disease to adults whose vaccinations have worn off with time and to children who can’t be vaccinated because their immune systems are too weak (either because of illness or chemotherapy or because they are younger than one year old). Currently, all states allow parents to opt out of vaccination for religious or medical reasons (such as preexisting illness), and a growing number of states allow parents to opt out based on any personal beliefs.

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During the late 19th century, Americans’ willingness to have doctors attend childbirths gradually increased, as did doctors’ interest in doing so. As described in Chapter 11, 19th-century allopathic doctors faced substantial competition not only from each other but also from many other kinds of practitioners. As a result, doctors attempted to expand into various fields—from pulling teeth to embalm- ing the dead to assisting in childbirth (Starr, 1982:85). Doctors considered assisting in childbirth especially crucial because they believed that families who came to a doctor for childbirth would stay with him for other services (Wertz and Wertz, 1989:55).

As Americans’ belief in science and medicine grew during the late 19th cen- tury, medical assistance in childbirth became more socially acceptable among the upper classes (Starr, 1982:59). Many women supported this change because it allowed them to obtain painkillers from doctors without feeling guilty for circum- venting the biblical command to bring forth children in pain (Wertz and Wertz, 1989:110–113). In addition, because midwifery was not a respectable occupation for Victorian women, middle- and upper-class women seeking a childbirth at- tendant had only two options by the late 19th century: lower-class lay midwives or doctors of their own social class. Having a doctor attend one’s childbirth thus could both reflect and increase one’s social standing (Leavitt, 1986: 39; Wertz and Wertz, 1989). Ironically, however, doctors probably threatened women’s health more than did midwives; although inexperienced or impatient midwives certainly could endanger women, doctors more often used surgical and manual interven- tions that could cause permanent injuries or deadly infections (Leavitt, 1983:281– 292, 1986:43–58; Rooks, 1997).

Beginning in the mid-19th century, doctors’ desire to obtain a monopoly on childbirth care led them to voice opposition to midwives. These attacks escalated substantially in the early 20th century (Sullivan and Weitz, 1988:9–14). Recent waves of immigrants had swelled the ranks of midwives and made them more visible and threatening to doctors, whose status, especially in obstetrics, remained low. Moreover, doctors now needed the business of poor women as well as wealth- ier women because the rise in scientific medical education had created a need for poor women patients who could serve as both research subjects and training material.

To expand their clientele, doctors attempted through speeches and publica- tions to convince women that childbirth was inherently and unpredictably dan- gerous and therefore required medical assistance. In addition, doctors played on contemporary prejudices against immigrants, African Americans, and women to argue that midwives were ignorant, uneducable, and a threat to American values and that midwifery should therefore be outlawed. For example, writing in the Southern Medical Journal, Dr. Felix J. Underwood, the director of the Mississippi Bureau of Child Hygiene, described African American midwives as “filthy and ignorant and not far removed from the jungles of Africa, with its atmosphere of weird superstition and voodooism” (1926:683).

Although these campaigns cost midwives many clients, they had little effect on the law. Many members of the public, and even many doctors (particularly those in public health), believed that trained midwives could provide satisfactory

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care, at least for poor and nonwhite women who couldn’t afford doctors’ services. Consequently, laws passed during this era tended to have quite lenient provisions. In the end, however, imposing lenient laws rather than laws requiring upgraded midwifery training and skills resulted in the deterioration of midwifery and its virtual elimination. The only exceptions were in immigrant and nonwhite com- munities in the rural South and Southwest, where traditional midwives continued to conduct home births until at least the 1950s (Sullivan and Weitz, 1988:13–14).

The Resurgence of Direct-Entry Midwifery By the second half of the 20th century, childbirth had moved almost solely into hospital wards under medical care. Although childbearing women were grateful for the pain relief and safety that doctors promised, all too often women still found the experience painful, humil- iating, and alienating. Despite the absence of scientific support for such practices, doctors routinely shaved women’s pubic areas before delivery, strapped them on their backs to labor and delivery tables (the most painful and difficult position for delivering a baby), isolated them from their husbands during delivery and from their infants afterward, and gave them drugs to speed up their labors or make them unconscious—all practices that scientific research would eventually find unneces- sary or dangerous (Sullivan and Weitz, 1988).

Objections to such procedures sparked the growth of the natural childbirth movement during the 1960s and 1970s and forced numerous changes in obstetric practices. Most hospitals, for example, now offer natural childbirth classes. Critics, however, argue that the real purpose of these classes is to make women patients more compliant and convince them that they have had a natural childbirth as long as they remain conscious even if their doctors use drugs, surgery, or forceps (Sul- livan and Weitz, 1988:39).

By the late 1960s, many women had concluded that hospitals would never offer truly natural childbirth (Sullivan and Weitz, 1988:38–39). As a result, a tiny but growing number of women chose to give birth at home. For assistance, they turned to sympathetic doctors and to female friends and relatives, some of whom were nurses. Over time, women who gained experience in this fashion might find themselves identified within their communities as midwives. This new genera- tion of direct-entry midwives who attend almost solely home births reflects the broader revolt against medicalized birth (Sullivan and Weitz, 1988:23–59).

Working as a direct-entry midwife means long and uncertain hours with little pay. Most midwives, however, are motivated by humanitarian and philosophical concerns rather than by financial gain (Simonds, Rothman, and Norman, 2007). Although midwives recognize the need for obstetricians to manage the complica- tions that occur in around 10% of births, they fear the physical and emotional dan- gers that arise when obstetricians use interventionist practices that were developed for the rare pathological case during all births. Like nurse–midwives, direct-entry midwives strongly believe in the general normalcy of pregnancy and childbirth and in the benefits of individualized, holistic maternity care in which midwife and client work as partners.

No national laws set the status of direct-entry midwives. Direct-entry midwifery is now legal in 30 states—and illegal in most of the rest (Midwives

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Association of North America, 2018). In states where midwifery is illegal, mid- wives run the risk of prosecution for practicing medicine without a license and for child abuse, manslaughter, or homicide if a mother or baby suffers injury or death. Yet research strongly suggests that home births conducted by experienced direct-entry midwives working with low-risk populations are as safe as or safer than doctor-attended hospital births, even taking into account the small number of midwifery clients who develop problems needing medical attention (Johnson and Davis, 2005; Lewis, 1993).

In states where direct-entry midwifery is legal, midwives typically must abide by regulations restricting them to “low-risk” clients (such as women younger than age 35) and restricting the techniques they can use (such as forbidding them from suturing tears after deliveries). These midwives typically must have a backup doc- tor and must transfer their clients to medical care if the doctor so orders. Thus, legalization has given midwives some degree of freedom to practice in exchange for limited subordination to medicine (Sullivan and Weitz, 1988:97–111).

Despite evidence such as this, medical opposition to direct-entry midwifery remains strong and public support weak, although insurance companies do cover midwifery services in some states. Thus direct-entry midwives, even where legal, can’t claim to have achieved social acceptance even as limited practitioners.

Curanderos

Curanderos are folk healers who function within Mexican and Mexican Amer- ican communities (DeBellonia et al., 2008; Perrone, Stockel, and Krueger, 1989; Roeder, 1988). In the United States, curanderos are used primarily by immigrants, as well as by some U.S.-born Mexican Americans, especially those who live in close-knit communities in the Southwest. Those who use curanderos rarely reject modern medicine. Instead, they seek curanderos when medical care fails to cure illness, when distance or poverty limits access to medical care, or when fear of deportation keeps them from seeking medical care, and because such curanderos share their language and their cultural beliefs (Favazza, 2013; Sack, 2008b). Use of curanderos appears to have risen because of the downturn in the U.S. economy and crackdowns on undocumented immigrants (Sack, 2008b). The former has made it difficult for some to afford mainstream health care, whereas the latter has led some to avoid mainstream health care for fear that they will be reported to immigration authorities.

Theories and Treatments Curanderos recognize both Western categories of disease, such as colds and categories of illness unique to Hispanic culture such as susto (DeBellonia et al., 2008; Roeder, 1988). A common diagnosis, susto refers to an illness that occurs when fright “jars the soul from the body, in which case treatment consists of calling the soul back” (Roeder, 1988:324). Curanderos also sometimes trace illness to supernatural forces such as mal de ojo, or the evil eye.

Curanderos treat illness in a variety of ways, including herbal remedies, mas- sage, prayer, and rituals designed to combat supernatural forces. They believe ill- ness reflects all aspects of an individual’s life—biology, environment, social setting,

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religion, and supernatural forces—and thus must be treated holistically. As a result, curanderos often spend considerable time listening to their clients. The successes curanderos sometimes achieve in treating their clients’ illnesses thus derive not only from their knowledge of herbs and the healing powers of their clients’ faith but also from the simple healing power of a sympathetic listener. At the same time, curanderos’ lack of scientific knowledge can threaten health when, for example, they use folk remedies that contain mercury, lead, or other toxins (DeBellonia et al., 2008).

Becoming a Curandero Individuals become curanderos through apprentice- ships, typically with family members. Successful curanderos find that their prac- tices evolve gradually from part-time work, paid primarily in goods and services, to more or less full-time cash businesses.

The story of Gregorita Rodriguez, a curandera (female curandero) living in Santa Fe, New Mexico, who specializes in massage treatments, illustrates this process:

Gregorita traces her own career as a curandera back to her grandmother, Juliana Montoya, who taught Gregorita’s aunt, Valentina Romero, the art of curanderismo. When any of Gregorita’s seventeen children became ill, she took them to her Aunt Valentina for treatment. La curandera taught Gregorita, encouraging her by asking, “Why don’t you learn? Look, touch here.” Using her children’s bellies as a classroom, Gregorita felt the different abdominal disorders and learned how to manipulate the intestines to relieve the ailments.

Another of her patients during this learning period was her husband. Responding to his complaints, Gregorita said, “Maybe I can do something for you.” Mr. Rodriguez replied, “No, no, no! You are not going to boss me!” So, off he went to see Aunt Valentina, who was elsewhere delivering a baby. Finally, Gregorita got her chance. Her husband was desperate and allowed her to learn, all the time howling about how much she was hurting him. “Cranky,” she described him, “especially when I felt a big ball in his stomach and had to work very hard. Slow, slow, I fixed him and he got better. When he went to my aunt, she said he was okay now. After that I treated my husband and one of my sisters and then her family. That’s the way it started” (Perrone et al., 1989:108–109). After this incident, others began coming to Gregorita for treatment, and she soon found herself accepted as a curandero.

The Impact of Medical Dominance Because they lack any recognized train- ing in health care, curanderos can’t legally charge fees or bill insurance companies for payment. Some work for free, others for fees ranging from $10 to $100. Most keep a low profile, obtaining clients only through word of mouth and only within the Hispanic community. As this suggests, even a folk healer who appears to func- tion completely outside the bounds and control of the Western scientific world can’t avoid its authority altogether.

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That said, some hospitals and clinics in heavily Hispanic areas now invite cu- randeros to perform ritual healings (or “cleanings”) for their patients. Doing so, they hope, will reduce patients’ stress levels, increase their satisfaction with care, and thus increase the likelihood that they will recommend the hospital to others (Brown, 2009). As this suggests, curanderos can’t completely escape medical dom- inance, but the pressure on medical institutions to allow curanderos some role in health care will likely increase as the Hispanic population increases.

Acupuncturists

Acupuncture is one of the oldest forms of healing known. Its recorded history goes back 2000 years, with strong prehistorical evidence going back to the Bronze Age. Only recently, however, has it gained traction in Western societies.

Theories and Treatments Acupuncturists’ ideas regarding health and illness bear even less relationship to Western medicine than do curanderos’ ideas. Like all traditional Chinese medicine, acupuncture is based on the concept of chi. The con- cept has no Western equivalent but refers to the vital life force or energy. Health occurs when chi flows freely through the body, balanced between yin and yang, the opposing forces in nature. Because any combination of problems in the mind, body, spirit, social environment, or physical environment can restrict chi, treatment must be holistic.

Following this theory, traditional Chinese healers consider both symptoms and diagnosis unimportant and focus instead on unblocking chi. Acupuncture is based on the theory that chi runs through the body to the different organs in channels known as meridians, which have no Western equivalents. To cure a prob- lem in the colon, for example, acupuncturists apply needles to the index finger, which they believe connects to the colon via a meridian. In this way, they believe, they can stimulate an individual’s chi and direct it wherever it is needed. Acu- puncturists decide on treatment through taking a complete history, palpating the patient’s abdomen, measuring his or her blood pressure, and reading the 12 pulses recognized by Chinese medicine.

Acupuncture is still used extensively in China, both alone and in conjunction with Western medicine, and it is used increasingly in the West. The World Health Organization (2003) considers acupuncture effective and safe for relieving anxiety, panic disorders, insomnia, postoperative and dental pain, and nausea caused by pregnancy or chemotherapy.

The Impact of Medical Dominance Widespread American interest in acu- puncture began during the 1970s when the People’s Republic of China first opened to U.S. travelers. Early travelers brought back near-miraculous tales of acupuncture anesthesia and treatment. Because American doctors had no scien- tific model that could account for acupuncture’s effects, these tales threatened their position and worldview (Wolpe, 1985). As a result, various well-known doc- tors publicly denounced acupuncture, claiming it worked only as a placebo or only because Chinese stoicism or revolutionary zeal allowed them to ignore pain

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even though acupuncture also had worked on animals and on Western travelers to China.

To remove this threat to their cultural authority, doctors endeavored to con- trol the definition, study, and use of acupuncture (Wolpe, 1985). This proved rela- tively easy because, unlike chiropractic or osteopathy, acupuncture at the time had few American supporters. Consequently, in their writings and public pronounce- ments, doctors could strip acupuncture of its grounding in traditional Chinese medical philosophy and define it simply as the use of needles to produce anesthe- sia. Pressure from medical organizations led the National Institutes of Health to adopt a similar definition in funding research on acupuncture. At the same time, pressure from doctors led most states to adopt licensure laws allowing any doctor, regardless of training, to practice acupuncture but forbidding all others, no matter how well trained, from doing so except under medical supervision. Thus, for many years, most traditional acupuncturists in the United States worked illegally within Asian communities.

During the past decade, however, as acceptance of alternative healing tradi- tions has increased, the position of acupuncturists has improved. Some insurance companies will reimburse nondoctors for acupuncture treatments, and most states now allow nondoctors to perform acupuncture, although some of these states require medical supervision or require acupuncturists to be licensed by medically dominated boards. Use of acupuncture remains rare: Only 1.4% of U.S. residents report using it in a one-year period (Barnes et al., 2008). Surprisingly, around half of acupuncture users report receiving some insurance coverage for it (Tindle et al., 2005). Despite this small indication of increasing acceptance, these figures suggest that acupuncture remains a marginal therapy and occupation, posing little threat to medical dominance.

IMPLICATIONS

As the discussions in this chapter have suggested, the health care arena is much broader than we usually recognize. Many alternatives to medical treatment exist far beyond those discussed herein. Most of these alternatives function not so much in opposition to mainstream health care as in parallel, with those seeking care jumping back and forth across the tracks. For example, a woman might deliver her first child with a doctor, her second with a nurse–midwife, and her third with a direct-entry midwife, whereas a man who experiences chronic back pain might see a chiropractor or acupuncturist either before, after, or in addition to seeing a medical doctor.

This chapter has highlighted the factors that help health care occupations gain professional autonomy in the face of medical dominance. Timing certainly seems to play a role: Those occupations that emerged before medical dominance became cemented such as osteopathy and chiropractic have proved most successful. Social factors, too, consistently seem important: Health care occupations with roots in and support from higher-status social groups have a better chance of winning pro- fessional autonomy than do those with lower-status roots and supporters.

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Other occupations seem to retain some autonomy—if a marginal position in the health care arena—because they pose little threat to medical dominance. Curanderos, for example, attract a small clientele of poor Mexicans and Mexican Americans who might not be able to pay for medical care or communicate effec- tively with medical doctors anyway. Doctors thus have little incentive to eliminate curanderos’ practices. Acupuncturists, on the other hand, have attracted not only Asians and Asian Americans but also well-educated whites—including individu- als with the skills and resources to publicize the virtues of acupuncture. Conse- quently, doctors have had a far greater vested interest in restricting acupuncturists’ practices and in co-opting acupuncture for their own purposes.

It is no surprise that developing professional autonomy seems most difficult for those such as nurses who work directly under medical control. In contrast, groups such as chiropractors have considerably more leeway to develop their prac- tices without interference from medical doctors.

Finally and ironically, strict licensing laws that force an occupation to increase its standards can ultimately increase the occupation’s status and autonomy—even if the laws were promoted by doctors who hoped to squash an occupation’s growth.

To date, medical doctors have succeeded in retaining their professional au- tonomy and dominance partly because of their greater ability to provide scientific data supporting their theories and practices—or at least to convince the public that they have such data. It remains to be seen whether increased federal support for research on alternatives will increase scientific credibility and public support for these practices.

SUMMARY

1. Nursing as a field has tried to improve its status primarily by increasing educational requirements. It has been held back by its status as a “female” occupation and by public expectations that women are naturally caring and thus don’t need professional salaries, professional status, or good work conditions in exchange for their caregiving.

2. The emphasis on higher education has reinforced nursing’s hierarchical structure and alienated nurses who lack higher degrees. Meanwhile, corporatization and the emphasis on cost cutting have worsened nurses’ working conditions.

3. Advanced practice nurses (most of whom are also registered nurses) hold postgraduate degrees in specialized nursing fields. They now enjoy autonomy, status, and public respect similar to that of many other professionals, and they serve in some cases essentially as primary care providers.

4. Osteopathy has achieved professional status almost equal to medicine by adopting beliefs and practices almost identical to that of medical doctors. As a result, osteopathy’s independent identity has been threatened. In

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contrast, chiropractors have retained their unique identity and gained occupational status by increasing educational standards and remaining limited practitioners, although some chiropractors continue to seek a wider role in health care.

5. Alternative or complementary therapies are therapies that are neither widely used by doctors nor typically taught in medical schools, even if they sometimes are covered by health insurance. Little is known about the effectiveness of these therapies. Interest in alternative healing is growing not only among American consumers but also among allopathic doctors.

6. Before the 19th century, direct-entry midwives delivered almost all American babies. Direct-entry midwives lost this status because of growing public belief in science, competition from doctors, their low status as women, and the lack of strict licensing and educational requirements. Direct-entry midwifery reappeared in response to dissatisfaction with medicalized childbirth, but it remains a marginalized occupation with few clients despite evidence of its safety.

7. Curanderos are folk healers with no legal standing and no formal training who function within Mexican and Mexican American communities. They recognize both Western and non-Western categories of disease and treat illness holistically.

8. Acupuncturists believe that illness is caused when the body’s chi—best translated as “vital life force”—becomes unbalanced or blocked. Western doctors have tried to limit the use of acupuncture by controlling its definition, study, and use. Use of acupuncture and insurance reimbursement for it are growing, as is evidence that it is effective for certain conditions.

REVIEW QUESTIONS

1. How did the early history of nursing make it difficult for nurses to increase their status or improve their working conditions?

2. How have nurses attempted to professionalize? What factors have limited their success?

3. How have changes in the health care system affected nurses’ occupational status and position?

4. How did osteopaths attempt to professionalize? What factors enabled them to succeed? What price has osteopathy paid for its success?

5. How did dentistry succeed in retaining professional status and independence from medical dominance?

6. To what extent and in what ways have chiropractors succeeded in improving their occupational status?

7. How and why did doctors gain control over childbirth?

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8. What factors led to the growth of direct-entry midwifery?

9. How do individuals become curanderos? How does medical dominance affect their work and their lives?

10. How have doctors attempted to control acupuncture? What factors have helped or hindered them in this attempt?

CRITICAL THINKING QUESTIONS

1. The term doula refers to a woman (there are no men) who provides physical, emotional, and educational support to pregnant women during labor and delivery. There are no national standards for certification for this new health care occupation. Compare doulas with nurses and explain why you think doulas will or will not find it difficult to achieve professional status.

2. Assume that 10 years from now all registered nurses will have bachelor’s degrees. Explain one reason why you think this will change the status of nursing as an occupation and one reason why it will not change the occupation’s status.

3. How are alternative healers affected by medical dominance?

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Issues in Bioethics

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LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Describe the key cases in the history of bioethics. ● Evaluate the issues involved in several contemporary bioethics debates. ● Understand the ways in which bioethics has become institutionalized. ● Assess the impact and limitations of bioethics on research, medical

education, and clinical practice.

It was almost midnight when we got the call: Our brother-in-law, Brian, had been injured in a catastrophic industrial accident that had left him with second- and third-degree burns over 95% of his body, as well as strong indications that his throat and lungs had been seriously burned.

Brian’s accident occurred literally in sight of a major hospital with a regional burn unit, and he was brought to the hospital within minutes. Following the accident, Brian remained in a strange limbo between life and death—unconscious although not comatose, and kept alive by aggressive medical treatment and an ever-increasing assortment of drugs and machines. Burned everywhere except his genitals and the soles of his feet, bandaged from head to toe with only his face showing, and swollen grotesquely, Brian’s appearance was literally nightmarish; no one who saw him slept well afterward. Each day brought minor crises, and each week brought a major crisis that made death seem imminent—as indeed it was, for Brian died three and a half weeks after the accident.

The severity of Brian’s injuries immediately made me wonder whether it might be best to treat only his pain and let him die a natural death. Brian had never written a living will (a document specifying the circumstances in which he would no longer want medical treatment), but he had told his wife, Lisa, that he would not want to live if his quality of life was ever compromised substantially. Questions about whether treatment made sense became increasingly salient to the family as the days passed; his lungs, stomach, and kidneys failed; and bacterial, viral, and fungal infections assaulted his body.

Because Brian remained unconscious throughout his hospital stay, legally Lisa was authorized to make treatment decisions for him. The doctors acknowledged that the final decisions were up to Lisa and that they could not ethically or legally proceed without her informed consent. In practice, however, they kept decision-making authority to themselves by defining certain decisions as purely technical matters not requiring Lisa’s consent, shaping her treatment decisions by providing information selectively, ignoring her decisions when they disagreed with them, cutting off her questions when they found them

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uncomfortable, and telling her that withholding treatment was unethical and hence out of the question. Although some nurses indicated quietly to Lisa that her concerns were valid, the hospital’s pastoral counselors and social workers urged Lisa to trust the doctors’ judgment.

In the end, Brian’s condition began deteriorating so rapidly and completely that the doctors had no further treatments to try. Around the same time, a new resident who took Lisa’s concerns seriously joined the staff. A long conversation with him helped Lisa both to understand the doctors’ perspective and to express her own view. When this resident recommended that she consent to withdrawing the drug that kept Brian’s heart beating, Lisa agreed. Brian died that night. (Weitz, 1999)

Medicine, nursing, and other health care professionals have long recognized that health care should be based on ethical principles. The Hippocratic Oath, for exam- ple, written in about 400 b.c., instructed doctors to take only actions that would benefit their patients and to forswear euthanasia, seducing patients, and divulging patients’ secrets. As Brian and Lisa’s story suggests, however, in practice, health care still sometimes falls short of meeting ethical principles. In this chapter, we explore the history of bioethics, the study of all ethical issues involved in the biological sciences and health care, and analyze how bioethics has—and has not—affected American health care and medical research.

To some students and faculty, it might seem odd to include a chapter on bioethics in a sociology textbook. Yet the issues raised by bioethics are sociological ones because many revolve around the impact of power differences among social groups (most often between physicians and patients). Even when exploring the same issues, however, bioethicists and sociologists use different lenses. Robert Zussman, a sociologist who has studied bioethics extensively, succinctly summarizes the difference:

Medical ethics may be thought of as the normative study of high principles for the purpose of guiding clinical decisions. In contrast, the sociology of medical ethics may be thought of as the empirical study of clinical decisions for the purpose of understanding the social structure of medicine. Clearly then, medical ethicists and sociologists of medical ethics travel much of the same terrain, but they do so traveling in different directions. (1997:174)

HISTORY OF BIOETHICS

Since its beginning in 1848, the American Medical Association (AMA) has required its members to subscribe to its code of ethics. The code, however, speaks more to medical etiquette—proper relations among doctors—than to medical ethics or, more broadly, bioethics. Indeed, throughout the 19th century and well

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into the 20th century, doctors’ ideas regarding bioethics remained vague, and their commitment to bioethics remained weak. Although doctors undoubtedly would have identified relieving human suffering as their primary goal in both research and clinical practice, they sometimes behaved in ways that would horrify modern doctors and bioethicists. For example, Dr. J. Marion Sims, considered the father of modern obstetrics, achieved fame during the 1840s for developing a surgical procedure to correct vesicovaginal fistulae, tears in the wall between a woman’s vagina and bladder usually caused by overaggressive medical intervention during childbirth (Barker-Benfield, 1976). Women who suffered these fistulae could not control the leakage of urine and often had to withdraw from social life altogether because of odor and the resulting social shame. To develop a surgical cure, Sims bought black women slaves who had fistulae and then operated on them as many as 30 times each in an era before antibiotics and antisepsis and with only addictive drugs for anesthetics. When Sims announced his new surgical technique, the med- ical world and the public greeted him with acclaim. No one questioned his ethics.

A century later, Nazi doctors working in German concentration camps used prisoners whom they considered less than human for equally barbaric—and even less justifiable—experiments. The world’s response to these experiments would mark the beginnings of modern bioethics.

The Nazi Doctors and the Nuremberg Code

In 1933, the German people voted the Nazi Party and Adolf Hitler into power. At that time, Germany’s medical schools and researchers were respected worldwide, and its health care system was considered one of the world’s best (Redlich, 1978).

Shortly after coming to power, the Nazi government passed the Law for the Prevention of Congenitally Ill Progeny (Lifton, 1986). This law required the sterilization of anyone considered likely to give birth to children with diseases that doctors considered genetic, including mental retardation, schizophrenia, manic depression, epilepsy, blindness, deafness, or alcoholism. Under this law, government- employed doctors sterilized between 200,000 and 300,000 persons. Two years later, in 1935, the government passed the Law to Protect Genetic Health, which prohibited the marriage of persons with certain diseases.

Both these laws reflected a belief in eugenics, the theory that the population should be “improved” through selective breeding and birth control. The eugenics movement has had many followers throughout the Western world. By 1920, 25 U.S. states had passed laws allowing the sterilization of those believed (usually incorrectly) to carry genes for mental retardation or criminality. Several states also passed laws forbidding the marriage of persons with illnesses considered genetic (Lifton, 1986).

As the power of the Nazis grew in Germany and as public response to their actions both within and outside Germany proved mild, the Nazis adopted ever bolder eugenic actions (Lifton, 1986; Redlich, 1978). Beginning in 1939, the Nazis began systematically killing patients in state mental hospitals. Doctors played a central role in this program, selecting patients for death and supervising their poi- soning with lethal drugs or carbon monoxide gas. Doctors and nurses also watched silently while many more patients starved to death. In total, between 80,000 and

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100,000 adults and 5,000 children died (Lifton, 1986). Doctors played similar roles in Nazi concentration camps where millions of Jews, Roma, and others died (Lifton, 1986; Redlich, 1978). In addition, doctors working in these concentra- tion camps (including university professors and highly respected senior medical researchers) performed hundreds of unethical experiments on prisoners—such as studying how quickly individuals would die when exposed to freezing cold and whether injecting dye into prisoners’ eyes would change their eye color. Doctors also used prisoners to gain surgical experience by, for example, removing healthy ovaries or kidneys or creating wounds on which to practice surgical treatments.

After the Nazi defeat, the Allied victors prosecuted 23 of these doctors for com- mitting “medical crimes against humanity,” eventually sentencing seven to death and nine to prison (Lifton, 1986). These decisions constituted the basis for what is now known as the Nuremberg Code, a set of internationally recognized princi- ples regarding the ethics of human experimentation (see Box 13.1, “Principles of the Nuremberg Code” p. 307). The code requires researchers to have a medically

Principles of the Nuremberg CodeB o x 13.1

1. The voluntary consent of the human subject is absolutely essential. . . .

2. The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature.

3. The experiment should be so designed and based on the results of animal experimentation and a knowledge of the natural history of the disease or other problem under study that the anticipated results will justify the performance of the experiment.

4. The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.

5. No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur. . . .

6. The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment.

7. Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury, disability, or death.

8. The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment.

9. During the course of the experiment, the human subject should be at liberty to bring the experiment to an end. . . .

10. The scientist in charge must be prepared to terminate the experiment at any stage if he has probable cause to believe . . . that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject.

SOURCE: Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10 (1949).

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justifiable purpose, do all they can to protect their subjects from harm, and ensure that their subjects give informed consent—that is, voluntarily agreement to par- ticipate in the research with a full understanding of the potential risks and benefits.

The Rise of Bioethics

Because the trials received relatively little publicity in the United States and because Americans typically viewed Nazi doctors as Nazis rather than as doctors, few drew connections between Nazi practices and American medical practices (Rothman, 1991). As a result, discussion of bioethics remained largely dormant in the years following the Nuremberg Trials. During the 1960s and early 1970s, how- ever, ethical questions regarding medical care and research in the United States became topics of popular discussion.

Bioethics and the New Technologies One reason for rising concern was the rise of new technologies. Of particular importance was the development of kidney dialysis, a technology that could keep alive persons whose kidneys had failed (Fox and Swazey, 1974). Demand for dialysis far outstripped supply, forcing selection committees made up of doctors and in some cases laypeople to decide who would receive this life-saving treatment and who would die. Forced to choose from among the many who, on medical grounds, were equally likely to benefit from the treatment, these committees frequently based their choices on social criteria such as gender, age, apparent emotional stability, social class, and marital status. When news of these committees’ work reached the public, the resulting outcry led to new federal regulations designed to allocate kidney dialysis more fairly.

Whereas the dialysis debate focused on the right to gain access to life-saving technologies, the case of Karen Quinlan focused attention on the right to die, which essentially translates to the right to refuse medical technologies, from feed- ing tubes to heart–lung machines. At age 21, after ingesting a combination of drugs at a party, Quinlan fell into a coma. Initially, her parents encouraged her doctors to do everything possible to keep her alive and restore her health. Once her parents learned that she had suffered extensive brain damage and would never regain any mental or physical functioning, however, they asked that she be removed from life support and be allowed to die. When the doctors refused, the parents took their fight to the courts. After almost a year of legal battles, Quinlan’s parents won the right to remove her from the mechanical respirator that had kept her alive.

The Quinlan case gained enormous public attention and sympathy for the right to die and highlighted the problems involved in having too much, rather than too little, access to medical care and technology. In addition, the Quinlan case signaled both the entry of lawyers and the legal system into health care decision making and the problems with using the courts to decide such intensely personal issues (Bosk, 2010).

Bioethics and Medical Research During the same years, concern grew not only about the ethics of medical practice but also about the ethics of medical research. These concerns were initially brought to public attention in 1966 when

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Henry Beecher (1966) published an article in the prestigious New England Journal of Medicine describing 22 recent research studies, published in top medical journals, that had relied on ethically questionable methods. In one study, for example, sol- diers sick with streptococcal infections received experimental treatments instead of penicillin, causing 25 soldiers to develop rheumatic fever. In another, doctors inserted catheters into the bladders of healthy newborns and x-rayed them with- out parental consent to study how bladders worked.

To determine the frequency of such studies, Beecher looked at 100 consecutive research studies published in a prestigious medical journal. In 12 of the 100 studies, researchers had not told subjects of the risks involved in the experiments or had not even told the subjects they were in an experiment. Yet no journal reviewer, editor, or reader had questioned the ethics of these studies.

Beecher’s article sent ripples of concern through both the medical world and the general public as news of the article spread through the mass media. This public concern translated into pressure on Congress and on the U.S. Public Health Service (PHS), at the time the nation’s major funder of medical research. To demonstrate to Congress that it could handle the problem itself and to keep public concern from turning into budget cuts, the PHS in 1966 published guidelines for protecting human subjects in medical research (Rothman, 1991).

The Willowbrook Hepatitis Study Concern about medical research was fur- ther heightened when the Willowbrook hepatitis story and the Tuskegee syphilis study burst into the news in the early 1970s. Willowbrook State School, run by the state of New York, was an institution for mentally retarded children. Conditions in Willowbrook were horrendous, with children routinely left naked, hungry, and lying in urine and excrement. As a result, hepatitis, a highly contagious, debilitat- ing, and sometimes deadly disease, ran rampant among the children and, to a lesser extent, the hospital staff.

In 1956, to document the natural history of hepatitis and to test vaccinations and treatments, two pediatrics professors from New York University School of Medicine began purposely infecting children with the disease. In addition, to test the effectiveness of different dosages of gamma globulin, which the researchers knew offered some protection against hepatitis, they injected some children with gamma globulin but left others unvaccinated for comparison. The children’s par- ents had consented to this research but had received only vague descriptions of its nature and potential risks.

The researchers offered several justifications for their work. First, they argued, the benefits of the research outweighed any potential risks. Second, they had in- fected the children only with a relatively mild strain of the virus and therefore had decreased the odds that the children would become infected with the far less com- mon but considerably more dangerous strain that also existed in the school. Third, the children who participated in the experiments lived in better conditions than did the others in the institution and therefore were protected against the many other infections common there. Fourth, the children would probably become in- fected with hepatitis anyway given the abysmal conditions in the institution. Fifth, the researchers believed they should not be held accountable because the parents

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had given permission. Using these arguments, the researchers had obtained ap- proval for their experiments from the state of New York, the Willowbrook State School, and New York University. Over a 15-year period, they published a series of articles based on their research without any reviewer, editor, or reader raising ethical objections.

In 1970, however, the ethical flaws of these experiments were exposed in the popular media and in medical journals. These experiments, many argued, violated the basic principle of informed consent. The parents had not given truly voluntary consent because they could get their children admitted to Willowbrook only by allowing them to participate in the hepatitis experiments. In addition, parents had not given truly informed consent because researchers had not told them that gamma globulin could provide long-term immunity to hepatitis. Opponents of the study also questioned why the researchers experimented on children, who could not give informed consent, rather than on hospital staff. Finally, opponents questioned why the researchers—who, after all, were pediatricians—had chosen to take advantage of this “opportunity” to study hepatitis rather than try to wipe out the epidemic. This debate exploded in the New York media and, in the ensuing public outcry, the research ground to a halt.

The Tuskegee Syphilis Study Similar questions arose in 1972, when the Tuskegee Syphilis Study made headlines (Jones, 1993). Begun by the federal PHS in 1932, the study, which was still underway, was intended to document the natural progression of untreated syphilis in African American men. At the time the study began, medical scientists understood the devastating consequences of untreated syphilis in whites (including neurological damage and heart disease in its later stages). But reflecting the racist logic of the times, the scientists suspected its pro- gression took a different and milder form in African Americans.

For this study, researchers identified 399 desperately poor and mostly illit- erate African American men, all with untreated late-stage syphilis, who lived in and around Tuskegee, Alabama. The men were neither told they had syphilis nor offered treatment. Instead, researchers informed them that they had “bad blood” (a local term for a wide variety of ailments) and offered them free health care, transportation to medical clinics, free meals on examination days, and payment of burial expenses—enormous inducements given the men’s extreme poverty—if the men would participate in the study.

At the time the study began, treating syphilis was difficult, lengthy, and costly. The development of penicillin in the early 1940s, however, gave doctors a simple and effective treatment. Yet throughout the course of the study, researchers not only did not offer penicillin to their subjects but also kept them from receiving it elsewhere. During World War II, researchers worked with local draft boards to prevent their subjects from getting drafted into the military, where the subjects might have received treatment. When federally funded venereal disease treatment clinics opened locally, researchers enlisted the support of clinic doctors to keep research subjects from receiving treatment. Similarly, they enlisted the cooperation of Tuskegee’s all-white medical society to ensure that no local doctor gave penicillin to their subjects for any other reason.

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The Tuskegee Syphilis Study, which treated African American men as less- than-human guinea pigs, was not the work of a few isolated crackpots. Rather, it was run by a respected federal agency with the cooperation of state and county medical associations and even of doctors and nurses from the local Tuskegee Institute, a world-renowned college for African Americans. Over the years, more than a dozen articles based on the study appeared in top medical journals without anyone ever questioning the study’s ethics. Yet the study patently flouted the Nuremberg Code and, after 1966, the PHS’s own research ethics guidelines. Nevertheless, the study did not end until a 1972 newspaper exposé caused public outrage. By that time, at least 28 and possibly as many as 100 research subjects had died of syphilis, and an unknown number had succumbed to syphilis-related heart problems (Jones, 1993).

CONTEMPORARY ISSUES IN BIOETHICS

As health care has evolved, so have questions about bioethics. Indeed, there are far too many bioethics issues for one chapter—or even one book—to cover. This section provides a sampling of currently simmering debates in bioethics.

Reproductive Technology

One area that has sparked considerable debate since the late 1970s is reproductive technology, or medical developments that allow doctors to control the process of human conception and fetal development. Reproductive technology first came to the public’s attention in 1978 with the birth of Louise Brown, the world’s first “test-tube baby.” Louise’s mother was unable to conceive a baby because her fallopian tubes, through which eggs must descend to reach sperm and be fertil- ized, were blocked. Using a technique known as in vitro fertilization, her doctors removed an egg from her body, fertilized it with her husband’s sperm in a test tube, and then implanted it in her uterus to develop. Nine months later, Louise Brown was born.

Louise Brown’s birth raised questions about how far doctors should go in in- terfering in the normal human processes of reproduction. Subsequent cases raised even trickier questions. For example, courts have had to decide whether fetuses should be placed for adoption when the biological parents have died and whether custody of fetuses after divorce should go to the parent who wants the fetuses im- planted or the one who wants them destroyed. More recently, doctors and others have debated whether couples should be allowed to hire women to carry their fetuses to term for them, whether postmenopausal women should be allowed to have a baby using another woman’s egg, and whether doctors should be allowed to combine genes from a man and two women into one embryo to avoid transmitting genetic defects carried by one of the women.

More broadly, these cases have raised basic questions regarding the morality of intervening so directly in the process of human reproduction, including whether individuals are harmed or helped by having access to such technologies. Those

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who favor the new reproductive technologies argue that the technologies give couples greater control over their destinies. Those who oppose the new tech- nologies, on the other hand, argue that these technologies seduce couples into spending enormous amounts of time and money in a usually futile effort to have children who share their genes rather than finding other ways (such as adoption) to create meaningful lives for themselves.

More recently, increasing use of in vitro fertilization and related technologies has contributed to a rise in women carrying multiple fetuses and consequently to an increase in premature births. Around 10% of U.S. babies are now born prema- turely (Centers for Disease Control and Prevention, 2018b).

When a woman learns she is carrying multiple fetuses, she (and her partner, if she has one) must decide either to abort some of the fetuses or to risk having twins, triplets, or even octuplets. Regardless of their previous feelings on abortion, deciding to abort is difficult for anyone who has struggled to have a child.

If the woman continues with multiple fetuses, the entire family, at some level, is at risk. The woman may be confined to bed for months to avoid miscarrying, which places her under significant physical, psychological, and financial stress if she can no longer work. Childbirth, too, is especially dangerous for both mothers and babies during multiple births. Moreover, because more than 50% of twins and more than 85% of triplets are born prematurely, many need ferociously expensive intensive care, die within the first year, or suffer permanent mental or physical defects, often resulting in long-lasting emotional strains, financial strains, or time burdens on the family (Saul, 2009).

Enhancing Human Traits

The past 30 years also have witnessed growing concern about the ethics of med- ical interventions designed to enhance human traits. No clear definition of such enhancements exist, but the term is used to refer to techniques used to improve human traits beyond a level generally considered normal rather than to treat con- ditions considered deviant or defective. This is a necessarily subjective definition because individual judgments regarding what is normal vary greatly. Nevertheless, we would probably all acknowledge a qualitative difference between providing cosmetic surgery to a person with a severely burned face versus providing it to a professional model who desires more prominent cheekbones. Similarly, there is a qualitative difference between using psychotropic drugs to avoid schizophrenic hallucinations versus using them to improve one’s exam grades—a process psychi- atrist Peter Kramer (1993) refers to as “cosmetic psychopharmacology.”

Ethical questions regarding enhancements have increased as their use has in- creased (Whitehouse et al., 1997). Is it ethically justifiable for individuals to im- prove their offspring through genetic preselection or fetal surgery? If so, will those who don’t use these technologies become a “genetic underclass”? Should health insurance cover drugs such as Viagra, which helps men achieve erections and can improve quality of life perhaps beyond the norm for a given age? Should health insurance cover cosmetic (as opposed to reconstructive) surgery, and should doc- tors promote surgeries (such as liposuction) whose benefits are purely cosmetic

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and whose potential risks include death? Should psychotropic drugs be prescribed to individuals who don’t have diagnosable mental illnesses but who want to be more sociable, alert, or assertive? And is it ethical to provide potentially harmful medical care to enhance some individuals while others still lack basic medical care? Finally, some professionals have questioned whether enhancements pro- vide unethical advantages. If Olympic athletes are forbidden from taking drugs to improve their performance, why are waitresses allowed to get breast implants to generate more tips and businesspeople allowed to take Ritalin to improve their concentration? Conversely, is it ethical to restrain the options of those who would provide or purchase such services?

Resource Allocation and the Right to Refuse to Treat

For many years, policy analysts, researchers, and ethicists have raised questions about whether the health care system distributes resources such as drugs, medi- cal care, and surgical care in a just and ethical way. This debate takes two forms: deciding which individuals should get care and deciding which procedures should be funded regardless of individual patient.

In the United States, decisions about who should get care mostly occur through implicit rationing: Anyone who can afford health care gets it, anyone who can’t afford it doesn’t. In contrast, and as we saw in Chapter 9, access to health care is considered a right in other developed nations. The Affordable Care Act (ACA) is an important step in that direction.

But even when individuals can afford health care, decisions still sometimes need to be made about whether they should have access to that care (Wicclair and White, 2014). This situation occurs whenever doctors or others consider a treatment to be futile. For example, imagine an 80-year-old woman with a life-threatening infection and heart condition that have left her too ill to speak for herself. Now imagine that her husband demands heart surgery even though her doctors believe her odds of surviving the surgery and regaining a decent quality of life are slim. In cases like this one, the individual’s right to autonomy (in this case, with the husband legally speaking for his wife) must be balanced with doctors’ ethical responsibilities both to this patient (whom they believe will be harmed by continuing her suffering) and to other patients (given that any resources devoted to futile care for one patient will not be available to patients who might benefit more).

As initially proposed, the ACA aimed to reduce these conflicts by reimbursing doctors for time spent discussing end-of-life care with patients and families. This plan was dropped from the ACA after opponents labeled such discussions “death panels.” However, since 2016 Medicare has reimburse doctors for providing end- of-life counseling.

Debate over which procedures should be made available first came to the fore in 1989 with passage of legislation establishing the Oregon Health Plan (OHP), which offered free care to all Oregonians who were too poor to purchase insur- ance but not poor enough to get Medicaid (Saha, Coffman, and Smits, 2010). To keep costs affordable, each year the OHP first lists all possible health care services

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in order of priority based on effectiveness and costs as well as public priorities and values. It then contracts with managed care organizations to purchase services for OHP members, beginning at the top of its priority list and working its way down until it reached its budget limit. Thus, based on the budget available in any given year, expensive lower-priority services (such as heart transplants) might be eliminated, but low-cost and highly effective services (such as vaccinations) would be funded, and no individuals would be dropped from the program.

The OHP legislation marked the first time that a U.S. governmental body explicitly rationed health care—deciding in advance that some procedures simply cost too much to provide. The explicit use of rationing resulted in an outcry across the country, both from those who considered it discrimination against persons with disabilities and those who believed it was unethical to ration care only for the poor. Tellingly, the ACA did not adopt this approach.

CRISPR Technologies

The rise of new technologies has also led to considerable concern over the use of CRISPR techniques (Doudna and Sternberg, 2017).

CRISPR is the acronym for clustered regularly interspaced short palindromic repeats and refers to regularly repeated bits of virus DNA that become part of the DNA of humans and other organisms. When this inclusion happens, an organism can recognize the virus DNA as invasive and mobilize its immune system against it. This same CRISPR response is now being used by scientists to alter genes.

The ability to edit genes raises numerous ethical issues (Doudna and Stern- berg, 2017). First, although it has not yet occurred and is illegal in some nations, scientists could use CRISPR with relative ease to alter the genes in human eggs or sperm. Once this is done, the eggs or sperm could be used to conceive a baby, whose altered genes would be passed on to future generations. The technique could be used to eliminate devastating diseases caused by single genes—or to change eye color. It could reduce human suffering—and could increase human inequality because some populations will be far more likely to have access to the technology than others.

Second, a variation of CRISPR could be used to rapidly spread a genetic change, especially in insect populations that reproduce quickly. Doing so could save millions of lives by, for example, making it impossible for mosquitoes to reproduce or to carry yellow fever. But the same technique could inadvertently leave humans, animals, or insects more vulnerable to disease or genetic defects. And it could be used to edit germs into devastating weapons of bacterial warfare (Doudna and Sternberg, 2017).

Athletes and Concussions

In recent years, numerous studies have demonstrated the potentially devastating consequences of concussions for athletes in sports ranging from soccer to cheer- leading (Kirschen et al., 2014). Concussions can cause severe headaches, memory loss, dementia, and depression, and they can be a major factor in suicides. The

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dangers multiply when players are extremely young (their brains are still develop- ing), when they are hit with great force (as in football or bull riding), when they suffer multiple concussions over time, and when they are quickly returned to play after a concussion or hard hit to the head. For these reasons, the American Acad- emy of Neurology has officially declared that doctors who care for athletes are ethically required “to safeguard the current and future physical and mental health of [those] patients” (Kirschen et al., 2014:352). This means that doctors must put the interests of players above those of teams, schools, and any other organization or individual for whom they work.

One can easily argue that those same ethical obligations extend to coaches, trainers, nurses, parents, and anyone who participates in deciding whether a player should return to the field—although, of course, the ethical obligation falls heaviest on those with the most medical knowledge. In addition, some argue that schools and athletic organizations have an ethical obligation to provide appropriate test- ing and treatment to injured athletes and to ensure that players don’t lose their scholarships if they must stop playing to protect their health. Finally, some argue that sports fans who understand the risks have an ethical obligation to make their views known—whether through boos, letters, or canceling season’s tickets—when players are returned to the field too soon (Kaminer, 2012).

Schools, leagues, and coaches as well as doctors may have an ethical obligation to protect athletes from brain damage stemming from sports-related concussions.

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INSTITUTIONALIZING BIOETHICS

Concern about bioethics has led to the development of formal mechanisms to ensure that health care and health research will be conducted ethically. In this sec- tion, we look at four of those mechanisms: hospital ethics committees, institutional review boards, professional ethics committees, and community advisory boards.

Hospital Ethics Committees

The origins of hospital ethics committees can be traced to the 1950s. As previously noted, many hospitals used committees to select patients for kidney dialysis. Sim- ilarly, hospitals routinely used committees to decide which women merited abor- tions on medical grounds. At the time, the legal status of abortion was unclear, and the moral status of abortion was just starting to become a public issue (Luker, 1984).

Other hospital ethics committees arose in the aftermath of the 1982 “Baby Doe” case, in which parents of a newborn who was mentally retarded and had a defective digestive system decided they did not want the defect corrected by sur- gery. The doctors complied with their decision, and the baby died six days later. When news of the case broke, a public furor arose. These days, most large hospitals have ethics committees or consultants available to review any cases considered ethically problematic.

Institutional Review Boards

Although universities and hospitals began establishing committees to review re- search ethics in the 1960s, such committees did not become common until the 1970s. In the aftermath of the Tuskegee scandal, Congress in 1974 created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The commission’s reports laid the groundwork for current guidelines regarding research ethics. That same year, the National Research Act mandated the development of institutional review boards (IRBs), charging them with reviewing all federally funded research projects involving human sub- jects. Such boards now exist at all universities and other research institutions, and they monitor both social science and medical research.

In recent years, though, pharmaceutical research has increasingly shifted from federally funded projects in hospitals and universities to for-profit projects funded by pharmaceutical companies and conducted by research organizations, individual doctors, or the pharmaceutical companies themselves. To oversee this research, for- profit, commercial IRBs have emerged, run by or under contract with pharmaceu- tical companies or other research organizations (Lemmens and Freedman, 2000).

The conflict of interest involved in such IRBs is obvious. When employees of a pharmaceutical company review their company’s research, they know that their company’s success depends on getting that research approved. Similarly, those who work for commercial IRBs know that they are unlikely to get future contracts from pharmaceutical companies unless they approve those companies’ research proposals.

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Professional Ethics Committees

Many professional organizations now also have ethics committees that establish guidelines for professional practice. The American Fertility Society, for example, has published a statement of principles regarding the moral status of human em- bryos created in laboratories, and the ethics committee of the American College of Obstetrics and Gynecology has published guidelines regarding the ethics of selectively aborting fetuses when a woman who has used fertility drugs becomes pregnant with multiple fetuses.

Community Advisory Boards

The most recent development in this area is the emergence of community advi- sory boards (CABs). The purpose of CABs is to bring individuals from the com- munity together with health care providers to make difficult bioethical decisions regarding both research and treatment (Quinn, 2004). For example, CABs may be asked to represent patients in treatment decisions when the patients are uncon- scious or incompetent and family members are unavailable.

The use of CABs to evaluate research designs is linked to the rise of ge- netic research. Typically, we think of genetic testing as an individual decision: Should someone whose mother died of breast cancer or whose sister has Down syndrome get a genetic test to ascertain her own risk of having or passing on these diseases? But genetic testing also has implications for communities. Ge- netic tests can stigmatize an entire community (when, for example, African Americans were first identified as having higher risks of sickle cell anemia), can challenge ideas about who belongs to a community (when genetic differences are found within a community), and can challenge a community’s ideas about its origins (when, for example, Native American legends locating tribal origins in the Americas clash with genetic findings suggesting Asian origins). For these reasons, researchers have begun involving communities in discussions of research priorities, research design, and the dissemination of research findings. This leaves open, however, the much larger question of who constitutes a community and who should decide for it.

THE IMPACT OF BIOETHICS

The growth of the bioethics movement and the institutionalizing of bioethics in U.S. hospitals and universities have made ethical issues more visible than ever before. Articles on bioethics were virtually nonexistent before the 1960s but now appear routinely in medical journals, and ethics committees have proliferated in both the clinical and research worlds.

These developments have led some observers to conclude that the bioethics movement has fundamentally altered the nature of medical work. According to historian David Rothman:

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By the mid-1970s, both the style and the substance of medical decision- making had changed. The authority that an individual physician had once exercised covertly was now subject to debate and review by colleagues and laypeople. Let the physician design a research protocol to deliver an experimental treatment, and in the room, by federal mandate, was an institutional review board composed of other physicians, lawyers, and community representatives to make certain that the potential benefits to the subject patient outweighed the risks. Let the physician attempt to allocate a scarce resource, like a donor heart, and in the room were federal and state legislators and administrators to help set standards of equity and justice. Let the physician decide to withdraw or terminate life sustaining treatment from an incompetent patient, and in the room were state judges to rule, in advance, on the legality of these actions. (1991:2)

Other observers, however, contend that the impact of the bioethics movement has been more muted (Annas, 1991). These critics argue that hospital, research, community, and professional ethics committees, like the earlier hospital abortion committees, exist primarily to offer legal protection and social support to re- searchers and clinicians, not to protect patients or research subjects. Furthermore, they argue, although clinicians have become more concerned with documenting their allegiance to ethics guidelines, they have not become any more concerned with following those guidelines. The following sections evaluate the impact of bio- ethics on health care research, medical education, and clinical practice.

The Impact on Research

According to ethicist George Annas, the bioethics movement as institutional- ized in research ethics boards and committees has affected medical research only slightly. In his words, the

primary mission [of research ethics committees] is to protect the institution by providing an alternative forum to litigation or unwanted publicity. . . . [For this reason] its membership is almost exclusively made up of researchers (not potential subjects) from the particular institution. These committees have changed the face of research in the U.S. by requiring investigators to justify their research on humans to a peer review group prior to recruiting subjects. But this does not mean that they have made research universally more “ethical.” In at least a few spectacular instances, these committees have provided ethical and legal cover that enabled experiments to be performed that otherwise would not have been because of their potentially devastating impact on human subjects. (1991:19)

As an example, Annas cites the case of “Baby Fae” (not her real name), who died in 1984 soon after doctors replaced her defective heart with a baboon’s heart. Although all available evidence indicated that cross-species transplants could not

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succeed, the doctors who performed the surgery had received approval from their hospital’s IRB. A subsequent review found that Baby Fae’s parents had not given truly informed consent because the doctors had not suggested seeking a human transplant, had disparaged available surgical treatments, and had unreasonably en- couraged the parents to believe that a baboon transplant could succeed.

Similarly, the requirement that medical research be approved by bioethics committees has in some cases led researchers to confuse ethics with regulation. For example, in one recent study, neuroscientists were asked, “What role do ethical concerns play in how you set up the research?” Nearly half gave answers like the one given by the following scientist:

I don’t think it really affected anything I do. It made me think about things that I wouldn’t have otherwise thought about, like insurance and what happens if things go wrong. . . . But in terms of the actual study, I think I just set it up as I wanted to do it, and then obviously sent it off to Ethics and it was all fine. So there was nothing that Ethics and the ethical procedure stopped me from doing that I wanted to do. (Brosnan, et al., 2013:1138)

For scientists such as this one, meeting regulatory requirements can become a substitute for thinking about difficult ethical issues.

Lack of resources and conflicts of interest also limit the effectiveness of IRBs. IRB members are unpaid volunteers who typically must review many research proposals yearly. In addition, many have vested interests in approving research pro- posals because their own research is partly financed by pharmaceutical companies or because their institutions can obtain research funding (Abbot and Grady, 2011). Meanwhile, final responsibility for overseeing IRBs falls to the federal Office of Protection from Research Risks, which is far too understaffed to thoroughly re- view human subjects research.

Nevertheless, and despite the limitations of IRBs and research ethics commit- tees, the rise of bioethics has curbed the most egregious abuses of human subjects. According to David Rothman,

The experiments that Henry Beecher described could not now occur; even the most ambitious or confident investigator would not today put forward such protocols. Indeed, the transformation in research practices is most dramatic in the area that was once most problematic: research on incompetent and institutionalized subjects. The young, the elderly, the mentally disabled, and the incarcerated are not fair game for the investigator. Researchers no longer get to choose the martyrs for mankind. (1991:251)

In fact, the balance has shifted to such an extent that we now sometimes read news stories not of researchers pressuring individuals to become research subjects but of desperately ill individuals pressuring researchers to accept them as research subjects for experimental treatments. At the same time, the shift toward for-profit drug testing (described in “Contemporary Issues: ‘Guinea Pigging,’” p. 320) has raised new concerns not only about the safety of research subjects but also about the credibility of the research enterprise itself.

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The Impact on Medical Education

One obvious result of the bioethics movement has been the incorporation of ethics training into medical education, with courses on ethics now common at U.S. medical schools. As critics have noted, however, those courses too often are divorced from real life and are aimed at teaching students ethical principles and legal norms through classroom lectures rather than at teaching students how to negotiate the everyday ethical dilemmas they will face. Moreover, such courses often assume that students who are already undergoing socialization to medical culture still can identify ethically problematic aspects of that culture (Hafferty and Franks, 1994). Finally, ethics courses can’t compensate for the ways in which ethics are discounted in the “hidden curriculum” of medical practice and culture. For example, a structure that expects students both to provide care for patients and to learn techniques on patients without the patients’ knowledge inherently teaches

CONTEMPORARY ISSUES

“Guinea Pigging”

The term guinea pigging first entered the mainstream American vocabulary in January 2008 when an article by that name was published in The New Yorker (Elliott, 2008). Guinea pigging refers to healthy individuals (overwhelmingly poor, sometimes students) who participate in clinical drug trials for pay.

In the past, most participants in drug trials were either medical students and personnel who at least intellectually understood the risks they faced or persons struggling with illnesses who might benefit from the drugs they tested. Over the past 10 years, however, as drug testing and development have exploded and have largely shifted from nonprofit to for-profit operations, the need to quickly find large numbers of research subjects has led to the widespread use of healthy subjects for pay in early trials of drugs. (If the drugs prove safe with healthy subjects, they are then tested for efficacy on ill subjects.)

These human guinea pigs can earn up to several thousand dollars for participating in research studies that can last weeks or months. The risks they face, though, can be high. The obvious dangers come from the drugs themselves. In March 2006, for example, six volunteers who participated in tests of a potential treatment for immune disorders were almost killed, and apparently all are now permanently disabled (Elliott, 2008). In addition, testing sometimes involves invasive and potentially dangerous procedures such as biopsies or endoscopies. Moreover, most clinical trials don’t cover medical costs—let alone compensation for pain or lost wages—when volunteers are injured or become ill as a result of the experiments. Participating in drug trials can also be extremely unpleasant, requiring subjects to wear rectal probes, experience food or sleep deprivation, live for weeks in hospital- like environs, or the like.

In addition to the risks faced by volunteers, the public is also placed at risk when drugs are tested in these circumstances. When subjects participate because they need money, they may feel no qualms about ignoring research protocols, such as sneaking food or alcohol when they are supposed to fast or abstain. Similarly, when researchers are employed by for-profit corporations, they may be inclined to interpret results optimistically or to recruit homeless alcoholics who need money rather than spending the time needed to recruit a more representative sample.

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students to view patients at least partly as objects rather than as subjects. From this perspective, only through “the integration of ethical principles into the everyday work of both science and medicine” can we expect new doctors to adopt more ethical approaches to care (Hafferty and Franks, 1994:868).

The Impact on Clinical Practice

Relatively few studies have looked at the impact of the bioethics movement on clinical practices. One series of studies looked at the impact of New York’s 1987 law establishing formal policies for writing “don’t resuscitate” orders (or- ders forbidding health care workers from intervening if the lungs or heart of a terminally ill patient stops functioning). These studies found that after the law’s passage, doctors significantly altered how they documented their actions but not how they acted (Zussman, 1992:162). Similarly, studies have found that hospitals sharply limit access of patients, family, and nonmedical staff to ethics consul- tations. As a result, consultations primarily function to provide additional in- stitutional support to doctors confronted by families or patients they consider disruptive, such as those who challenge doctors’ decisions regarding how aggres- sively to treat a patient (Kelly et al., 1997; Orr and Moon, 1993). These findings have led researchers to conclude that the true purpose of ethics consultations is to reinforce doctors’ power.

The most extensive study of the impact of bioethics on clinical practice ap- pears in Intensive Care: Medical Ethics and the Medical Profession (1992) by sociologist Robert Zussman. Zussman spent more than two years observing and interviewing in the intensive care units of two hospitals. His research suggests both the impact and the limitations of the bioethics movement.

Although cases such as Karen Quinlan’s and Baby Doe’s might suggest that doctors often want to use aggressive treatment despite the objections of patients and families, Zussman found that the reverse is usually the case on intensive care wards. Knowing that most of their patients will die, doctors on these wards often hesitate before beginning aggressive treatment, which might only escalate costs, increase their work as well as their patients’ suffering, and prolong the dying pro- cess. Patients and their relatives, however, often face a sudden and unexpected medical crisis. Unable to believe the situation hopeless, they demand that health care workers “do everything.” In these situations, the doctors Zussman studied expressed allegiance to the principle that families have the right to make decisions regarding treatment. In practice, however, doctors found ways to assert their dis- cretion if not the authority they had in years past.

Doctors asserted their discretion in several ways. First, doctors made decisions without asking families on the assumption that families would agree with their de- cisions. Second, doctors sometimes ignored a family’s stated decisions, arguing that it was cruel to force a family to make life-or-death decisions it might later regret. Third, doctors might respect a family’s wishes, but only after first shaping those wishes through providing information selectively. This information included de- fining the patient as terminally ill or not—a highly significant designation because ethical guidelines permit health care workers to withhold or terminate treatment

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only for terminally ill patients. Fourth, when doctors failed to shape a family’s wishes, the doctors could discount those wishes on the grounds that the family was too emotionally distraught to decide rationally.

Finally, and perhaps most important, doctors continued to assert their discre- tion by defining the decision to withhold treatment as merely a technical prob- lem and thus defining family members’ wishes as irrelevant. For example, doctors might acknowledge families’ general wishes regarding how aggressively treatment should proceed but then define each specific intervention as a technical decision best left to doctors.

Summing up his findings, Zussman writes:

The picture I have drawn corresponds neither to an image of unbridled professional discretion nor to one of patients’ rights triumphant. As many observers of contemporary medicine have argued, the discretion of physicians in clinical decisions (like the discretion of professionals in other fields) depends on their ability to make successful claims to the exclusive command of technical knowledge. Yet, while . . . physicians . . . make such claims, they don’t always succeed either in convincing themselves that they are legitimate or in converting them to influence over patients and their families, for the claims of physicians are met by the counterclaims of patients and, more important, families. . . . The institutionalization of patients’ rights, in law and in hospital policy . . . empower[s] families when they do insist on doing everything. In such a situation, physicians may continue to exercise considerable influence and enjoy considerable discretion. By no means have they been reduced to the role of technicians and nothing more. But at the same time, they must, at the very least, take the wishes of patients and families into account. (1992:159–160)

IMPLICATIONS

As we have seen, bioethics and sociology have much in common. At the most basic—if typically unacknowledged—level, bioethics, like sociology, is about power. The abuses of the Nazi doctors, for example, not only illuminate the horrors possible when ethical principles are ignored but also illustrate how social groups can obtain power over others and how individuals can be harmed or even killed when this happens. Conversely, sociology, in similarly unacknowledged ways, is at a basic level an ethical enterprise. Hidden assumptions about what society should be like and how society should be changed often underlie abstract, technical socio- logical discussions. Such assumptions often draw on philosophies regarding justice, autonomy, human worth, and other basic ethical issues. Yet in the same way that bioethicists often ignore the sociological implications of their work, sociologists often ignore the ethical implications of the questions they ask, the research they conduct, and the findings their research generates.

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It seems, then, that bioethicists and sociologists can provide each other with broader perspectives that can only enrich our understanding of both fields— encouraging bioethicists to see not only individual cases but also broader social and political issues and encouraging sociologists to see the world and their work in it as an ethical as well as a political and intellectual enterprise. These are issues that all of us should keep in mind as we seek our place in the world.

SUMMARY

1. Bioethics is the study of ethical issues in biological sciences and health care. Whether explicit or not, many of the issues bioethicists ponder revolve around the use and impact of power—a central concern of sociologists.

2. Although U.S. doctors have been required to subscribe to a code of ethics since 1848, in the past many doctors conducted research and practiced medicine in ways that would horrify modern bioethicists. One example was Dr. J. Marion Sims’s use of African American slaves as surgical guinea pigs.

3. After the Nazi defeat, Allied countries prosecuted 23 doctors as part of the broader war crimes trials popularly known as the Nuremberg Trials. These trials resulted in the development of the Nuremberg Code, a set of internationally recognized principles regarding the ethics of human experimentation.

4. Interest in bioethics in the United States grew substantially during the 1960s and 1970s, sparked by popular and medical articles on new technologies (such as kidney dialysis and machines that could keep people “alive” even if brain dead) and on unethical medical research practices (such as the Willowbrook hepatitis experiments and the Tuskegee syphilis research).

5. Contemporary bioethical issues include reproductive technology, the enhancement of human traits (through, for example, cosmetic surgery or memory-enhancing drugs), stem-cell and CRISPR research, resource allocation and the right to refuse to treat, and the obligation to protect athletes from the long-term consequences of concussions.

6. In recent years, various institutional mechanisms have developed to ensure that bioethical principles will be followed in health care and health research, including hospital, research, community, and professional ethics committees. More problematically, for-profit research ethics committees are now common.

7. The growth of the bioethics movement and the institutionalizing of bioethics in U.S. hospitals and universities have made ethical issues more visible than ever before. These changes have increased concern among doctors about bioethics, but it is not clear whether they have truly increased doctors’ commitment to acting ethically.

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REVIEW QUESTIONS

1. What is the Nuremberg Code, and how and why did it come into existence?

2. What factors led to the emergence of the bioethics movement in the late 1960s?

3. Why do researchers now consider the Tuskegee Syphilis Study and the Willowbrook hepatitis experiments to have been unethical?

4. What are the ethical problems involved in the new reproductive technology? In enhancements? In stem-cell research? In resource allocation? In protecting athletes from physical harm?

5. What impact has bioethics had on health care and on health research?

CRITICAL THINKING QUESTIONS

1. How can U.S. health care be made more ethical?

2. What role does doctors’ professional dominance play in creating ethical problems in medical care? What role does bioethics as institutionalized in the American health care system play in limiting doctors’ professional dominance?

3. What notable similarities and differences do you see between the behavior of the doctors in the Tuskegee syphilis experiments and in the Nazi genocide?

4. You now hold a position of power in our health care system. (You choose which position.) What three changes could you realistically attempt to make so that health care would be provided more ethically? Justify your decisions.

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Glossary

accommodation A technique individuals use to smooth interactions between themselves and those they consider potential sources of trouble, as well as one used between the latter group and other people. acquired immunodeficiency syndrome (AIDS) A latter phase of HIV infection that is marked by major health problems. See also HIV/AIDS. active voluntary euthanasia Ending the life of individuals who, because of illness or disability, have requested that they be killed. actuarial risk rating A system in which insurers try to maximize their financial gain by identifying and insuring only populations that have low health risks. acute Anything that has a sudden and recent onset, such as acute illness or acute pain. acute disease Any disease that strikes suddenly and disappears rapidly (within a month or so). Examples include chicken pox, colds, and influenza. ADA See Americans with Disabilities Act.

advanced practice nurses Individuals who, after becoming registered nurses, also receive specialized postgraduate training. Includes nurse–midwives and nurse practitioners. See also registered nurses.

Affordable Care Act (ACA) Legislation passed by Congress in 2010 designed to reduce the number of uninsured Americans within the existing health care system.

age-adjusted rates Epidemiological data that have been manipulated using standard statistical techniques to eliminate any effects that arise because some populations include more older or younger persons than do others. Age adjustment allows us to compare populations with different age distributions.

agency The ability of individuals to make their own choices, free of any limitations placed on them by other people, culture, or social forces. Similar to the concept of free will.

AIDS Acquired immunodeficiency syndrome. See also human immunodeficiency virus.

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allopathic doctors Nineteenth- century forerunners of contemporary medical doctors. Also known as “regular” doctors. almshouse An institution, also known as a poorhouse, in which all public wards, including orphans, criminals, the disabled, and the insane, received custodial care. alternative therapies Treatments rarely taught in medical schools and rarely used in hospitals. Also known as complementary therapies. AMA See American Medical Association. American Medical Association (AMA) The main professional association for medical doctors. Americans with Disabilities Act (ADA) Federal law, passed in 1990, that outlaws discrimination against individuals with disabilities in employment, public services (including transit), and public accommodations (such as restaurants, hotels, and stores). It requires that existing public transit systems and public accommodations be made accessible, along with all new public buildings and major renovations of existing buildings. assistant doctors Chinese health care workers who receive three years of postsecondary training, similar to that of doctors, in both Western and traditional Chinese medicine. balance bill To bill patients for the difference between the amount their insurance will pay for a given procedure and the amount the doctor would normally charge for that procedure. barefoot doctors Individuals from rural Chinese backgrounds who receive about three months of health care training from the state and alternate working in health care and in agriculture.

big data Huge studies that pull together multiple sets of data from entire populations. bioethics The study of all ethical issues involved in the biological sciences and health care. biomedicine The social institution that combines medicine, science, and technology. blaming the victim Process through which individuals are blamed for causing their problems. Blue Cross A group of private companies offering insurance that reimburses individuals primarily for the costs of hospital care, not including doctors’ bills. Blue Cross insurance is often offered and bought in conjunction with Blue Shield insurance. See also Blue Shield. Blue Shield A group of private companies offering insurance that reimburses individuals primarily for the costs of receiving care from doctors, especially care received in hospitals. Blue Shield insurance is often offered and bought in conjunction with Blue Cross insurance. See also Blue Cross. body project The intense focus on shaping one’s bodies to meet cultural norms to such an extent that doing so becomes central to one’s identity and life. boutique medicine Medical practices that charge patients a yearly administrative fee in addition to any charges for medical care. capitation A system in which doctors are paid a set annual fee for each patient in their practice, regardless of how many times they see their patients or what services the doctors provide for their patients. chiropractors Health care practitioners who specialize in spinal manipulation, who trace illness and disability to misalignments of the spine, and who

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believe spinal manipulation can cure a wide range of acute and chronic health problems. chronic Anything that continues over a long period such as chronic disease or chronic pain. chronic disease Disease that develops in an individual gradually or is present from birth and that will probably continue at least for several months and possibly until the person dies. Examples include muscular dystrophy, asthma, and diabetes. cognitive norms Socially accepted rules regarding proper ways of thinking. For example, someone should not think that he is Napoleon or that his radio is sending him secret messages from outer space. commercial insurance Insurance offered by companies that function on a for-profit basis. commodification Process of turning people into products that can be bought or sold. community rating A system for calculating insurance premiums in which each individual pays a premium based on the average health risk of his or her community as a whole. complementary therapies Treatments rarely taught in medical schools and rarely used in hospitals. Also known as alternative therapies. compliance Individuals’ willingness to follow the advice of health care workers. concurrent sexual partners Two or more sexual partners held by an individual during a given, overlapping time period. conflict perspective View that society is held together by power and coercion, with dominant groups imposing their will on subordinate groups.

contested illness Any collection of distressing, painful symptoms that occur together and that lay people assume constitute an illness even though many doctors disagree. control A process through which researchers statistically eliminate the potential influence of extraneous factors. For example, because social class and race often go together, researchers who want to investigate the impact of social class have to be sure that they are not really seeing the impact of race. To study the impact of social class on mental illness, therefore, researchers would have to look separately at the relationship between social class and mental illness among whites and then at the relationship among blacks to control for any effect of race. copayment Under some forms of health insurance, a fee that individuals must pay each time they see a health care provider. Fees can range from nominal sums to 20 percent of all costs. corporatization The growing role of investor-owned corporations in the health care field. cost shifting Raising prices charged some individuals for services received in order to make up for losses incurred when services are provided to other individuals who cannot or will not pay for services. countervailing powers The various powerful groups and institutions fighting for control over a given arena such as health care. CRISPR Regularly repeated bits of DNA from viruses that become part of the DNA of humans and other organisms, and that are now being used to alter genes. Acronym for clustered regularly interspaced short palindromic repeats. cultural competence The ability of health care providers to understand at

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least basic elements of others’ culture and thus provide medical care in ways that better meet clients’ emotional and physical needs. cultural health capital Cultural resources that can facilitate better health care by facilitating better relationships between patients and providers, including knowledge of basic medical terms, acceptance of medical concepts such as the germ theory of illness, belief in cultural values held by most doctors such as the benefits of efficiency, and the ability to speak the same language as one’s doctors. cumulative inequality theory This theory argues that inequality (1) primarily results from social systems (rather than individual choices) and (2) causes health problems that accumulate over the lifetime. cumulative stress burden The sum of an individual’s acute and chronic stresses over the life span. curanderos Folk healers who function within Mexican and Mexican American communities. death brokering The process through which medical authorities make deaths explainable, culturally acceptable, and individually meaningful. deductible Under some forms of health insurance, the minimum dollar amount of health care expenses that individuals must pay annually out of pocket before the insurance plan will begin covering any of their expenses. defensive medicine Tests and procedures that doctors perform primarily to protect themselves against lawsuits rather than to protect their patients’ health. deinstitutionalize To remove individuals (such as mentally retarded and mentally ill persons) from large institutions and return them to the community.

demedicalization The process through which a condition or behavior becomes defined as a natural condition or process rather than an illness. depersonalization The process through which an individual comes to feel less than fully human or comes to be viewed by others as less than fully human. depoliticize To define a situation in a way that hides or minimizes the political nature of that situation. deviance Behavior that violates a particular culture’s norms or expectations for proper behavior and therefore results in negative social sanctions. See negative social sanctions. diagnosis-related groups (DRGs) System established by the federal government that sets—for all Medicaid and Medicare patients and for each possible diagnosis—an average length of hospital stay and cost of inpatient treatment. Under the DRG system, hospitals are paid the established cost for each patient with a given diagnosis, regardless of the actual cost of treatment. Diagnostic and Statistical Manual of Mental Disorders (DSM) Manual published by the American Psychiatric Association and used by mental health workers to assign diagnoses to clients. Generally, this manual must be used if mental health workers want to obtain reimbursement for their services from insurance providers. differential In sociological writing, an adjective referring to a situation in which one group has more or less of something than another. For example, different social classes in the United States have differential access to health care. direct-entry midwives Midwives who lack nursing degrees. disability Restrictions or lack of ability to perform activities resulting from physical limitations or from the

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interplay among those limitations, social responses, and the built or social environment. discrimination Differential and unequal treatment grounded in prejudice. See also prejudice. disease A biological problem within an organism. doctor–nurse game “Game” in which the nurse is expected to make recommendations for medical treatment in such a way that the recommendations appear to have come from the doctor. DRG See diagnosis-related groups. DSM See Diagnostic and Statistical Manual of Mental Disorders. dysfunctional Refers to anything that threatens to undermine social stability. employer mandate A legal requirement that each employer offer health insurance to its employees and pay a specified percentage of the costs. endemic Referring to diseases that appear at a more or less stable rate over time within a given population. enhancements Techniques deemed to improve human traits beyond a level generally considered normal rather than to treat conditions considered deviant or defective. This distinction is artificial but occasionally useful. entrepreneurial system A system based on capitalism and free enterprise. environmental racism The disproportionate burden of environmental pollution experienced by racial and ethnic minorities. epidemic Either a sudden increase in the rate of a disease or the first appearance of a new disease. epidemiological transition The shift from a society burdened by infectious and parasitic diseases and in which life expectancy is low to one characterized by chronic and degenerative diseases and high life expectancy.

epidemiology The study of the distribution of disease within a population. epigenetic effect The combined effect of genes and environments on a trait or disease. eugenics The theory that the population should be “improved” through selective breeding and birth control. evidence-based medicine The use of medical therapies whose efficacy has been confirmed by large, randomized, controlled clinical studies. See also control. family leave programs Programs that allow individuals to take time off from work without risking their jobs to care for family members. Some programs offer paid leave; others offer only unpaid leave. fee-for-service The practice of paying doctors for each health care service they provide rather than paying them a salary. fee-for-service insurance Insurance that reimburses patients for all or part of the costs of the health care services they have purchased. feeling norms Socially defined expectations regarding the range, intensity, and duration of appropriate feelings and regarding how individuals should express those feelings in a given situation. feeling work Efforts made by individuals to avoid being labeled mentally ill by making their emotions match social expectations. Individuals can (1) change or reinterpret the situation that is causing their unacceptable feelings; (2) change their emotions physiologically through drugs, meditation, biofeedback, or other methods; (3) change their behavior, acting as if they feel more appropriate emotions than is actually the case; or

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(4) reinterpret their feelings, telling themselves, for example, that they are only tired rather than worried. feminization of aging The fact that women make up a larger proportion of the elderly than of younger age groups; the steady rise in the proportion of the population who are female at each successive age. fetal rights The growing body of legal, medical, and public opinion holding that fetuses have rights separate from and sometimes contrary to those of their mothers. financially progressive Describes any system in which poorer persons pay a smaller proportion of their income for a given good or service than do wealthier persons. financially regressive Describes any system in which poorer persons pay a larger proportion of their income for a given good or service than do wealthier persons. Flexner Report A report on the status of American medical education produced in 1910 by Abraham Flexner for the Carnegie Foundation. This report identified serious deficiencies in medical education and helped to produce substantial improvements in that system. for-profit, private hospitals Hospitals run with the primary goal of producing a profit each year for shareholders. formulary Official list of drugs that doctors in a managed care organization can prescribe without special authorization. See also managed care. functionalism View of society as a harmonious whole held together by socialization, mutual consent, and mutual interests. fundamental-cause theory A theoretical perspective that argues that, in each time and place, those

with greater access to resources will experience better health because they will be better able to use whatever resources are available to protect their health. gender The social categories of masculine and feminine and the social expectations of masculinity and femininity. gender convergence The ways in which men and women’s lives along with social expectations for how men and women should behave have become more similar over time. geneticization The shift toward increasingly defining genes as the cause of human disease, behavior, and differences. global health The idea that health and illness needs to be understood as a global process rather than something contained within individual nations. This includes recognizing the how international, national, and local organizations can affect health and how health and disease may have similar roots in social forces around the world. globalization The process through which ideas, resources, and persons increasingly operate within a worldwide rather than local framework. For example, the globalization of tourism means that U.S. tourists now consider Africa a plausible destination. Great Confinement The shift from the 1830s onward in both Europe and the United States toward confining mentally ill persons in large public institutions instead of in almshouses, small private “madhouses,” or family homes. habitual dispositions Routine, almost instinctual, attitudes regarding the merit of various behaviors that might harm or preserve health. health belief model Model predicting that individuals will follow medical

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advice when they (1) believe they are susceptible to a particular health problem, (2) believe the health problem they risk is a serious one, (3) believe compliance will significantly reduce their risk, and (4) do not perceive any significant barriers to compliance. health care convergence Ways in which international health care systems become increasingly similar over time because of similar scientific, technological, economic, and epidemiological pressures. health lifestyle theory A theory that attempts to predict why groups adopt patterns of healthy or unhealthy behavior by showing how demographic circumstances and cultural memberships combine with socialization and experiences to produce both life chances and life choices. These life chances and choices in turn lead to habitual dispositions toward healthy or unhealthy behaviors, which then lead to actual behaviors. health maintenance organizations (HMOs) Organizations that provide health care based on prepaid group insurance. Patients pay a fixed yearly fee in exchange for a full range of health care services, including hospital care as well as doctor’s services. health project The intense focus on actively protecting one’s health to such an extent that doing so becomes central to one’s identity and life. health social movements Informal networks of individuals who band together to collectively challenge health policy, politics, beliefs, or practices. heroic medicine System of treatment used by allopathic doctors before around 1860 that emphasized curing illnesses by purging the body through bloodletting, causing extreme vomiting, or using repeated laxatives and diuretics. See also allopathic doctors.

Hispanic paradox The relatively high life expectancy and low infant mortality apparently enjoyed on average by Hispanic Americans despite their overall lower social class status. HIV. See human immunodeficiency virus. HIV/AIDS Term that summarizes all stages of disease in humans caused by HIV infection. The disease harms an individual’s health by gradually destroying his or her immune system. HMO See health maintenance organization. holistic treatment Treatment based on the premise that all aspects of an individual’s life and body are interconnected—that, for example, to treat an individual with cancer effectively, health care workers must look at all organs of the body, not only the one that currently has a tumor, as well as at the individual’s psychological and social functioning. home health aides Workers, typically untrained, who provide essentially custodial care within individuals’ homes. homeopathic doctors Popular 19th-century health care workers who treated illnesses with extremely diluted solutions of drugs that would, at full strength, produce symptoms similar to those caused by the illnesses. hospices Institutions designed to meet the needs of dying people. human immunodeficiency virus (HIV) Virus that in its later stages causes AIDS. See also AIDS. illness The social experience of having a disease. illness behavior The process of responding to symptoms and deciding whether to seek diagnosis and treatment.

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illness behavior model A model that predicts the circumstances in which individuals are most likely to seek medical care. According to this model, individuals are most likely to do so if their symptoms are frequent or persistent, visible, and severe enough to interfere with daily activities and if they lack alternative explanations for the symptoms. incidence Number of new cases of an illness or health problem occurring within a given population during a given time period (e.g., the number of children born with Down syndrome in the United States during 2009). income inequality The gap in income between a nation’s poorest and wealthiest. individual mandate A legal requirement that each individual obtain health insurance. individualism A set of cultural beliefs and practices that encourages the autonomy, equality, and dignity of individuals and downplays the importance of connections to social groups. informed consent Voluntary agreement to participate in medical research or to receive a medical procedure or treatment with a full understanding of the potential risks and benefits. inpatient Hospital patient who is formally admitted and kept overnight. institution An enduring social structure that meets basic human needs such as the family, education, religion, or medicine (taken in its entirety). institutional review boards (IRBs) Federally mandated committees charged with reviewing the ethics of research projects involving human subjects. No research can be conducted using federal funds unless it first receives IRB approval.

insurance premium The yearly fee individuals pay to purchase insurance. intersex Adjective used to describe individuals who have both male and female biological characteristics such as a penis and a uterus or a vagina and an unusually large clitoris. IRBs See institutional review boards. irregular practitioners Nineteenth- century health care practitioners other than allopathic doctors, including homeopaths, midwives, botanic doctors, bonesetters, and patent medicine makers. least developed nations Those less developed nations that have the least gross national product per capita and lowest life expectancy. less developed nations Nations characterized by a relatively low gross national product per capita. These countries typically have relatively high rates of illiteracy, infant mortality, and other related problems, and their economies rely heavily on a few industries or products. licensed practical nurses (LPNs) Individuals, not registered nurses, who assist nurses primarily with the custodial care of patients. LPNs usually have completed approximately one year of classroom and clinical training. life events Any changes that force readjustments in individuals’ lives, including marriage or divorce, starting or leaving school, and gaining or losing a job. life expectancy The average number of years that individuals in a given population and born in a given year are expected to live. limited practitioners Occupational groups, such as chiropractors and optometrists, that confine their work to a limited range of treatments and certain parts of the body.

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LPNs See licensed practical nurses. magic bullets Drugs that prevent or cure illness by attacking one specific etiological factor. magnetic healers Nineteenth- century health workers who believed that an invisible magnetic fluid flowed through the body and that illness occurred when that flow was obstructed, unbalanced, inadequate, or excessive. Their treatments consisted of moving their hands along patients’ spinal cords to “free” blocked magnetic fluid. managed care A system that controls health care spending by monitoring closely how health care providers treat patients and where and when patients receive their health care. managed care organizations (MCOs) Health insurance providers such as health maintenance organizations that operate under the principles of managed care. manufacturers of illness Groups such as alcohol and tobacco manufacturers that promote illness- causing behaviors and social conditions. marginal practitioners Occupational groups such as faith healers that have low social status. master status A status viewed by others as so important that it overwhelms all other information about that individual. For example, if we know someone as the local scoutmaster, know he is a Republican and likes to play chess, and then learn he is gay, we might start thinking about him and interacting with him solely on the basis of his sexual orientation, essentially forgetting or ignoring the other information we have about him. MCOs See managed care organizations. Medicaid Joint federal and state health insurance program that pays the

costs of health care for people with incomes below a certain (extremely low) amount. Most Medicaid recipients are poor mothers and their children. Medicaid can cover the costs of both preventive and therapeutic medical care and both inpatient and outpatient hospital care, but details of coverage vary considerably from state to state, with some states providing considerably more services than others. medical dominance Professional dominance by doctors. See also professional dominance. medical model of disability A model of disability that assumes that disability stems solely from forces within the individual mind or body rather than from constraints built into the environment or into social attitudes. medical model of illness The way in which doctors conceptualize illness. This model consists of five doctrines: that disease is deviation from normal, specific and universal, caused by unique biological forces, analogous to the breakdown of a machine, and defined and treated medically through a neutral scientific process. medical model of mental illness A model of mental illness assuming that (1) objectively measurable conditions define mental illness; (2) mental illness stems largely or solely from something within individual psychology or biology; (3) mental illness will worsen if left untreated but might improve or disappear if treated promptly by a medical authority; and (4) treating someone who might be healthy is safer than not treating someone who might be ill. medical norms Expectations doctors hold regarding how they should act, think, and feel. medicalization Process through which a condition or behavior becomes defined as a medical problem requiring

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a medical solution or through which the definition of an illness is broadened to cover a wider population. Medicare Federal insurance based on the Social Security system that offers hospital insurance and medical insurance to those older than age 65 and to persons with permanent disabilities. miasma Disease-causing air “corrupted” by foul odors or fumes, according to doctors before the 20th century. minority group Any group that is considered inferior and subjected to differential and unequal treatment solely because of its physical or cultural characteristics. moral status A status that identifies in society’s eyes whether a person is good or bad, worthy or unworthy. moral treatment A 19th-century practice aimed at curing persons with mental illness by treating them with kindness and giving them opportunities for both work and play. morbidity Symptoms, illnesses, injuries, or impairments. more developed nations Nations characterized by a relatively high gross national product per capita. These countries typically have diversified economies and low rates of illiteracy, infant mortality, and other related problems. mortality Deaths. mortification A process occurring in total institutions through which a person’s prior self-image is partially or totally destroyed and replaced by a personality suited for life in the institution. See total institutions. national health insurance A system in which all citizens of a country receive their health coverage from a single governmental insurance plan.

National Health Service (NHS) A system in which the government directly pays all costs of health care for its citizens. negative social sanctions Punishments, ranging from ridicule to execution, meted out to those considered deviant by society. neglected tropical diseases (NTDS) Diseases that receive far less attention than they deserve given their impact. neoliberalism Socioeconomic philosophy that encourages free trade and private enterprise, discourages government involvement in social services, and promotes the idea that each individual has the freedom and the responsibility to make wise consumer choices. neonatal infant mortality Deaths of infants during the first 27 days after birth. NHS See National Health Service. normalize To make something seem like the normal course of events. In the context of medical error, this refers to emphasizing how medical errors can happen to anyone. In the context of mental illness, this refers to explaining to oneself and others how unusual behavior is not really a sign of mental illness. norms Social expectations for appropriate behavior. Nuremberg Code A set of internationally recognized principles regarding the ethics of human experimentation that emerged during the post–World War II Nuremberg trials for medical crimes against humanity. The code stipulates that researchers must have a medically justifiable purpose, do all within their power to protect their subjects from harm, and ensure that their subjects give voluntary, informed consent.

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nurse–midwives Registered nurses who receive additional formal, nationally accredited training in midwifery. nursing assistants Individuals, often untrained, who provide basic custodial care for patients, most often in nursing homes and hospitals. See nursing homes. nursing homes Facilities that primarily provide nursing and custodial care to many individuals over a long period of time. Skilled nursing homes also provide some medical care. outpatient Hospital patient who is neither formally admitted nor kept overnight. pandemic A worldwide epidemic. See also epidemic. parallel practitioners Occupational groups, such as osteopaths, that perform basically the same roles as allopathic doctors while retaining occupational autonomy. See also allopathic doctors. passive euthanasia When health care workers allow patients to die through inaction. performance norms Socially accepted rules for how a person should perform his or her roles. For example, we expect mothers to keep their children clean and paid workers to arrive on time each day. physician extenders Health care providers who have less education than physicians but who can take over some of the tasks traditionally done by physicians at lower costs. physician-assisted death When doctors help patients to end their lives. placebo Anything offered as a cure that has no known biological effect. placebo effect The process through which belief in a drug’s effectiveness leads patients to experience physical benefits from a drug (such as decrease in pain).

positive social sanctions Rewards of any sort, from good grades to public esteem. postneonatal infant mortality Deaths of infants between day 28 after birth and 11 months after birth. potentially ill Individuals who have been identified as being at a higher than average risk of illness. power Refers to the ability to get others to do what one wants, whether willingly or unwillingly. practice protocols Guidelines that establish norms of care for particular medical conditions under particular circumstances based on careful review of clinical research. prejudice Unwarranted suspicion or dislike of individuals because they belong to a particular group. prevalence Total number of cases of an illness or health problem within a given population at a particular point in time (e.g., the number of persons living in the United States who have hepatitis). This includes both those newly diagnosed and those diagnosed earlier who still have the disease. primary care Health care provided by physicians (such as family care doctors) and others who are trained to offer treatment and prevention services when individuals first seek health care and, ideally, as part of an ongoing provider– patient relationship. primary care doctors Doctors in family or general practice, internal medicine, and pediatrics who are typically the first doctors individuals see when they need medical care. primary practice; primary practitioners See primary care doctors. privatization of health care The shift toward encouraging the private purchase of health care; the private,

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for-profit practice of medicine; and, in general, the operation of market forces in health care. profession An occupation that has (1) the autonomy to set its own educational and licensing standards and to police its members for incompetence or malfeasance; (2) its own technical, specialized knowledge that is learned through extended, systematic training; and (3) the public’s confidence that it follows a code of ethics and works more from a sense of service than a desire for profit. professional dominance A profession’s freedom from control by other occupations or groups and ability to control other occupations working in the same sphere. Only priests, for example, can decide whether someone can become a priest, and priests control the training and work responsibilities of lay religious workers in their churches. professional socialization The process of learning the skills, knowledge, and values of an occupation. professionalization Process through which an occupation achieves professional status. pseudodisease Conditions diagnosed as disease based solely on test results but that will never cause health problems for the diagnosed individual. public hospitals Hospitals established by state and federal governments to provide services to groups that would not otherwise receive care. random samples Samples selected in such a way that each member of a population has an equal chance of being selected. When a sample is randomly selected, we can be fairly certain that the selected individuals will represent the population as a whole well. rates Proportions of populations that experience certain circumstances.

RBRVS See resource-based relative value scale. reductionistic treatment Treatment based on the assumption that each part can be treated separately from the whole in the same way that an air filter can be replaced in a car without worrying whether the problem with the air filter has caused or stemmed from problems in the car’s electrical system. registered nurses (RNs) Individuals who have received at least two years of nursing training and passed national licensure requirements. In everyday conversation, the word nurse generally means registered nurse. regular doctors Nineteenth-century forerunners of contemporary medical doctors. Also known as allopathic doctors. See also allopathic doctors. reliability The likelihood that different people using the same measure will reach the same conclusions. remedicalization The process through which mental illness is increasingly regarded by doctors and others as rooted in biology and amenable only to biological treatments. reproductive technology Medical developments that offer control over human conception and fetal development. residents Individuals who have graduated medical school and received their MD degrees but who are now engaging in further on-the-job training needed before they can enter independent practice. resource-based relative value scale (RBRVS) A complex formula designed to curb the costs of Medicare by limiting reimbursement to doctors to the estimated actual costs of services in a particular geographic area. respite care Any system designed to give family caregivers a break from their responsibilities.

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right to die The right to make decisions concerning one’s own death. risk society Any society in which the risks from potentially dangerous modern technologies are interwoven with the economy and thus are commonplace and accepted. RNs See registered nurses. self-diagnosis The process through which individuals try to diagnose themselves. self-fulfilling prophecy A situation in which individuals become what they are expected to be. For example, when it is assumed that no girls can throw a ball properly, girls might never be taught to do so, might never think it is worth trying on their own, and thus might never learn to do so. serial sexual partners Sexual relationships that occur one after another (rather than overlapping) in an individual’s life. sex The biological categories of male and female to which we are assigned based on our chromosomal structure, genitalia, hormones, and so on. Generally, individuals are considered male if they have XY sex chromosomes and female if they have XX sex chromosomes. sick role The set of four social expectations in Western society regarding how society should view sick people and how sick people should behave. First, the sick person is considered to have a legitimate reason for not fulfilling his or her normal social role. Second, sickness is considered beyond individual control, something for which the individual is not held responsible. Third, the sick person must recognize that sickness is undesirable and work to get well. Fourth, the sick person should seek and follow medical advice.

sickness funds German insurance programs offered by nonprofit groups to serve a given occupation, geographic location, or employer. Otherwise known as social insurance. single-payer system A health care system in which a single government health insurance organization covers all residents of a nation. social capital The resources available to an individual through his or her social network. Social capital is typically measured by some combination of the number of people with whom one has close personal relationships and the types of resources one can access through those relationships. social class The combination of an individual’s education, income, and occupational status or prestige; some researchers use only one of these indicators to measure social class, but others combine two or more indicators. social construction Ideas created by a social group as opposed to something that is objectively or naturally given. social control Means used by a social group to ensure that individuals conform to social norms and that the existing balance of power among groups is maintained. Social control can be formal (such as execution or commitment to a mental hospital) or informal (such as ridicule or shunning). See also norms. social control agents Individuals or groups of individuals who have the authority to enforce social norms, including parents, teachers, religious leaders, and doctors. See also norms. social drift theory A theory holding that lower-class persons have higher rates of illness because middle-class persons who become ill drift over time into the lower class.

338 G L O S S A RY

social epidemiology The study of the distribution of disease within a population according to social factors (such as social class, use of alcohol, or unemployment) rather than biological factors (such as blood pressure or genetics).

social insurance See sickness funds.

social networks The webs of social relationships that link people to each other as friends, relatives, acquaintances, coworkers, and so on.

sociological perspective View of the world that focuses on social patterns rather than individual behaviors.

Social Security Federally funded program that, since 1935, has provided financial assistance to formerly employed adults with mental or physical disabilities as well as to elderly adults, blind individuals, and children with disabilities.

social stress theory A theory holding that lower-class persons have higher rates of mental illness because of the stresses of lower-class life.

sociological model of disability A model that defines disabilities as restrictions or lack of ability to perform activities resulting largely or solely either from social responses to bodies that fail to meet social expectations or from assumptions about the body reflected in the social or physical environment.

sociological model of illness A way of thinking about illness, common among sociologists, that argues that illness is a subjective, moral, and political label. It is subjective in that individuals may reasonably differ on whether something should be labeled illness. It is moral in that those labeled ill are often regarded as inferior to others. It is political in that some groups have more power than others to decide what should be defined as illness.

sociological perspective A perspective regarding human life and society that focuses on identifying social patterns and grappling with social problems rather than on analyzing individual behavior and finding solutions for personal troubles. sociology in medicine An approach to the sociological study of health, illness, and health care that focuses on research questions of interest to doctors. sociology of medicine An approach that emphasizes using the area of health, illness, and health care to answer research questions of interest to sociologists in general. This approach often requires researchers to raise questions that could challenge medical views of the world and power relationships within the health care world. stakeholder mobilization Organized political opposition or support by groups with vested interest in the outcome. stereotypes Oversimplistic assumptions regarding the nature of group members, such as assuming that African Americans are unintelligent. stigma Any personal attribute that would be deeply discrediting if it becomes known. stress Situations that make individuals feel anxious and unsure how to respond, the emotions resulting from exposure to such situations, or the bodily changes occurring in response to these situations and feelings. structural violence Social arrangements that are both deeply embedded in the politics, culture, or economy of a society and that harm individuals or keep them from reaching their full potential. structure The social forces around us, including cultural pressures, economic

339G L O S S A RY

standing, gender expectations, presence of absence of necessary resources, and so on. When used as the opposite of agency, refers to the concept that individual choices are limited by all of these social forces. symbolic interactionism A theoretical perspective arguing that identity develops as part of an ongoing process of social interaction. Through this process, individuals learn to see themselves through the eyes of others, adopt the values of their community, and measure their self-worth against those values. technological imperative Belief that technology is always good, so any existing technological interventions should be used. technology Any human-made object used to perform a task, or a process using such objects. For example, the term technology can refer both to the overall process of kidney dialysis and to the specific pieces of equipment used in that process. total institutions Institutions in which all aspects of life are controlled by a central authority and in which large numbers of like-situated persons are dealt with en masse. Examples include mental hospitals, prisons, and the military. toxic agents Any substances that can harm or kill people or other organisms.

transgender People whose sense of their own gender does not match the physical sex (male or female) they were assigned at birth. unintended negative consequences Unplanned, harmful effects of actions that had been expected to produce only benefits. universal coverage Health care systems that provide access to health care for all legal residents of a nation. utilization review A system in which insurance companies require doctors to get approval before ordering certain tests, performing surgery, hospitalizing a patient, or keeping a patient hospitalized more than a given number of days. validity The likelihood that a given measure accurately reflects reality and measures what researchers believe it measures. voluntary hospitals Hospitals that are financially based in voluntarism, or charity, rather than a profit motive. Same as nonprofit institutions. wealth The total financial resources an individual or family owns, including cash, houses, pensions, and investments, among other things. WHO See World Health Organization. World Health Organization (WHO) United Nations organization charged with documenting health problems and improving world health.

340

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381

Index

Page numbers in italic indicate figures or tables. Page numbers in bold indicate glossary terms.

A abortions

maternal mortality and, 83–84 multiple fetuses and, 312 Plan B and, 286–287 selective, 84–85

ACA. See Affordable Care Act (ACA, “Obamacare”)

access to health care in Canada, 206 in China, 212 in Democratic Republic of

Congo, 217 geographic, 199 in Germany, 204 in Great Britain, 196–197, 208–209 in Mexico, 215 poverty and, 51 by Southeast Asians, 58 underinsured Americans and,

189–190 uninsured Americans and, 188–189

accidental deaths, 23–24 accommodation, 163

acquired immunodeficiency syndrome (AIDS), 20. See also HIV/AIDS

active voluntary euthanasia, 232 actuarial risk rating, 174 acupuncturists, 298–299, 300 acute diseases, 11, 267

age and, 60 hospital focus on, 225 incidence of, 21 medical education focus on, 267 sick role and, 112

acute pain, 122 acute stress, 142 ADHD (attention-deficit hyperactivity

disorder), 104, 105, 106 Adkins, Janet, 232 adolescents

Paxil and, 186–187 adults, with basic activity

limitations, 121 advanced practice nursing, 283–284 affordability, of health care, 200. See also

costs of health care

382 I N D E X

Affordable Care Act (ACA, “Obamacare”)

under attack, 177–178 costs of health care and, 183 employer mandate, 177 impact of, 178 individual mandate, 177 inpatient care in, 227 and mental illness, 160, 164–165 passage of, 171, 176 provisions of, 176–177, 197 resource allocation and, 313 salaried positions for doctors and, 255 uninsured Americans and, 188–189

African Americans health status of, 53–55 medications for, 185 mental illness in, 142–143 Tuskegee Syphilis Study and,

310–311 age. See also aging; children

health status and, 59–60 and illness behavior, 125 of nursing home residents, 228

age-adjusted rates, 22 agency, 37 aging

feminization of, 60 health care costs and, 179 limitations in basic life activities, 121 medicalization of, 106

agricultural societies, infant mortality in, 82

AIDS (acquired immunodeficiency syndrome), 20. See also HIV/AIDS

alcohol use extent of, 141 and premature deaths, 29–30

“alcopops,” 30 allopathic doctors, 250, 272, 284 almshouses, 151, 223, 279 alternative health care providers

acupuncturists, 298–299, 300 chiropractors, 290–292 curanderos, 296–298, 300

direct-entry midwives, 292–296 overview, 289–290

alternative therapies, 289 for chronic illness/disability,

128–129 AMA. See American Medical

Association (AMA) American Dental Association,

288, 289 American Hospital Association,

271, 291 American Medical Association (AMA),

253, 305 code of ethics, 305–306 decline of, 258–259 Flexner Report, 253–254 health insurance and, 172 medical dominance and, 253, 291 medical training and, 271–272 nursing and, 283

American Nurses Association, 280–281

American Osteopathic Association, 284–285

American Pharmacists Association, 287 Americans with Disabilities Act

(ADA), 120 Annas, George, 318 Anopheles mosquitoes, 80 antidepressants, 159, 159, 186 antipsychiatry critique, 154–155 antipsychotics, 159, 160, 187 Apple HealthKit, 128 Asian Americans

health status of, 57–59 life expectancy of, 53

assistant doctors, in China, 210 Association of American Medical

Colleges, 272 athletes, concussions for, 314–315 attention-deficit hyperactivity disorder

(ADHD), 104, 105, 106 Avanir Pharmaceuticals, 188 Avery, Andrea, 117–118

383I N D E X

B “Baby Doe” case, 316 “Baby Fae” case, 318–319 bacteria

cholera and, 97 and premature deaths, 30 syphilis and, 146

Balance bill, 206 barefoot doctors, 210 Barker, Kristin, 8 Becker, Marshall, 43 Bedell, Berkley, 290 Beecher, Henry, 309 big data, 15 “Big Pharma.” See pharmaceutical

industry bioethics, 305

concussions for athletes, 314–315 contemporary issues in, 311–315 CRISPR techniques, 314 enhance human traits, 312–313 history of, 305–311 impact of, 317–322 institutionalizing, 316–317 and medical research, 308–311 power and, 322 reproductive technology, 311–312 resource allocation, 313–314 right to refuse to treat, 313–314 and technology, 308

biological factors age, 59–60 gender and sex, 60–65 intersex, 64–65 in mental illness, 158–159 transgender, 63–64

biomedicine, 102 citizenship and, 103

“Black Death,” 10 blaming the victim, 119 Blue Cross, 172–173 Blue Shield, 172–173 body, mechanistic model of, 266, 268 body project, 40 bone marrow transplants, 222–223

Bosk, Charles, 7, 8 botanic eclectics, 253 Botox injections, 187 bottlefeeding, 85–86 boutique medicine, 260 Bouvia, Elizabeth, 232, 233 breast cancer, 4–5, 110 breastfeeding, 85–86 British Psychological Society

(BPS), 160 Brown, Louise, 311 Brown, Phil, 149 bubonic plague, 10 Byrne, Rhonda, 98

C Canada, health care system in, 181–182,

201, 202, 205–207 cancer, prostate, 240–241 capitation, 208 cardiopulmonary resuscitation (CPR),

239–240 caregiving, costs of, 235–236 Centers for Disease Control and

Prevention (CDC), 62, 238 cesarean sections, 106–107, 266 chemotherapy, 4–5 chi, 298 childbirth

demedicalization of, 107–108 direct-entry midwives for, 292–296 multiple fetuses and, 312 nurse-midwives and, 277–278,

283–284 struggle to control, 293–295

children. See also infant mortality antipsychotics prescribed to, 160 diet, poverty and, 50–51 Education for All Handicapped

Children Act, 120 intersex, 64–65 as “savior siblings,” 222–223 as soldiers, 87 vaccine refusal and, 293

384 I N D E X

China health care system in, 201, 202,

210–213 malnutrition in, 76 mass campaigns in, 211 role of sons in, 84–85

chiropractors, 290–292 cholera, 97–98 chronic diseases, 11, 267

age and, 60 alternative/complementary therapies

for, 128–129 health care and treatment regimens,

management of, 126–131 hospital focus on, 225 incidence of, 21 initial symptoms, response to,

123–126 in less developed nations, 74–75 sick role and, 112 social relationships/social standing,

management of, 131–135 chronic pain

ethnicity and, 123 gender and, 123 living with, 122–123 overview, 122 social class and, 123

chronic stress, 142 citizenship, and biomedicine, 103 class. See social class clinical experience, and medical values,

264–265, 267 clinical practice, impact of bioethics on,

321–322 Clinton, William J., 175 Cockerham, William, 38–39 cognitive norms, 147 Collins, Michael J., 249–250 commercial institutional review

boards, 316 commercial insurance, 174 commercial research organizations, 186 commodification, process of, 229 community advisory boards (CABs), 317

community rating, 173, 218 complementary therapies, 128–129,

289. See also alternative health care providers

compliance, with medical advice, 37 comprehensive benefits, and health care

systems, 200 concierge medicine, 260 concurrent sexual partners, 79 concussions, for athletes, 314–315 conflict perspective, on illness, 111–112 conscience clauses, 286–287 consumer choice, and health care

system, 201 contested illnesses, 104, 122 control, statistical, 15, 22, 155, 265 controlled experiments, 251 copayments, 177, 200 corporatization of medicine,

255–256, 282 cosmetic psychopharmacology, 312 cost shifting, 201 Costa Rica, malnutrition in, 75, 76 costs of health care

ACA and, 183 in Canada, 206–207 factors in, 180–183 family caregiving, 235–236 in Germany, 204–205 in Great Britain, 209 life expectancy and, 181 medical education, 262, 273 myths of, 178–179, 179, 180, 181 nurses, job satisfaction, and,

282–283 in nursing homes, 228 overview, 178, 200 pharmaceutical industry and,

183–188 countervailing powers, 259 CPR (cardiopulmonary resuscitation),

239–240 criminal justice system, and mental

illness, 156

385I N D E X

CRISPR (clustered regularly interspaced short palindromic repeats) techniques, 314

critical approach to sociology, 8–10 cultural competence, 272 cultural health capital, 270 cumulative inequality theory, 51 cumulative stress burden, 41, 51 curanderos, 296–298, 300 custodial care

for illness, 223 for mental illness, 152

D Darfur, war in, 87 Dartmouth Medical School, 272 data, evaluating, 14–15 death brokering, 240 deaths, causes of

alcohol use, 29–30 bacteria, 30 by development level of country, 74 by ethnicity, 54 firearms, 32 illicit drug use, 34–35 medical errors, 28–29 motor vehicle accidents, 32–33 overview of, 23–24, 24 risk societies, 31 sexual behavior, 33–34 tobacco, 27–28 toxic agents, 31 viruses, 30

deductibles, 177, 183, 200 defensive medicine, 179 deinstitutionalization, 155–156,

234–235 demedicalization, 107–108 Democratic Republic of Congo, health

care system in, 201, 202, 216–217 dentistry, 288–289 depersonalization, 155 depoliticization, 106 depression

antidepressant drugs and, 159, 159, 186

extent of, 141 gender and, 143–144 in war veterans, 145

development patterns, international, 71–73 development projects, and

malnutrition, 77 deviance, illness as, 101, 110–111 diabetes, as cause of death, 24 diagnosis

of mental illness, 148–149, 158 search for, 125–126

diagnosis-related groups (DRGs), 182–183, 203, 225, 257

Diagnostic and Statistical Manual of Mental Disorders (DSM), 149–150

dialysis, 308 Diamond, Timothy, 229 diarrheal diseases, 79–80 Dickson, Tennessee, 19 diet

in less developed nations, 75–77, 79–80

poverty and, 50–51 and premature deaths, 25–27

differential access to power, 8 direct-entry midwives, 292–296 direct-pay medicine, 260 direct-to-consumer advertising, 184 disability, 145

alternative/complementary therapies for, 128–129

definition of, 118–119, 120 health care and treatment regimens,

management of, 126–131 initial symptoms, response to,

123–126 medical model of, 118 people with, as minority group,

119–120 social distribution of, 120–121, 121 social relationships/social standing,

management of, 131–135 sociological model of, 118

386 I N D E X

disasters, in less developed nations, 87–88

discrimination, 54, 120 diseases, 20. See also acute diseases;

chronic diseases; infectious diseases diarrheal, 79–80 endemic, 10, 211 epidemiological transition, 11–13 European history of, 10–11 language of, 113 marketing of, 188 in New World, 11 respiratory, in less developed nations,

86–87 from social conditions, 19–20

DNA testing, 103 doctor-nurse game, 281 doctors. See also medical dominance

allopathic, 250, 272 assertion of discretion by, 321–322 barefoot, 210 childbirth and, 294–295 duty to care for patients and, 256–257 emotional detachment of, 249–250,

263–264, 267 homeopathic, 250–251, 253 median salaries by percentage women

in specialty, 263 Nazi, 306–308 pay. See pay, doctors primary care, 258, 268 and professional dominance, 254–255 regular, 250 relationships with nurses, 281–282 relationships with patients, 268–271 as residents, 262, 264

DRGs (diagnosis-related groups), 182–183, 203, 225

Drier, Peter, 171 drug testing, for-profit, 318, 319 drugs. See medications duty to provide care for patients,

256–257 dysfunctional, 111

E Ebola virus disease, 256–257 economic pressures, and health care

convergence, 203 education, in China, 213 Education for All Handicapped

Children Act, 120 Ehrlich, Paul, 101, 146 emotional detachment, doctors,

249–250, 263–264, 267 employer mandate, 177, 190 endemic diseases, 10, 211 enhancements to human traits, 312–313 entrepreneurial system, 201 environmental pollution

as cause of premature deaths, 31 poverty and, 50

environmental racism, 59 epidemics

duty to care for patients and, 256–257 overview, 10

epidemiological transition, 11–12 in China, 213 less developed nations and, 75 in Mexico, 216

epidemiology of mental illness, 141–145, 148 overview, 20–22 social, 20

epigenetic effect, 110 ethical issues. See bioethics Ethiopia, girls in, 70–71 ethnicity. See also specific ethnic groups

and chronic pain, 123 disability and, 121, 121 environmental racism and, 59 health status and, 52–59, 54 and illness behavior, 125 life expectancy by, 52 medical education and, 262–263 mental illness and, 142, 142–143 and nursing home usage, 227–228 paternalism and, 269–270

eugenics, 306–307 euthanasia, 232–233

387I N D E X

evaluating health care systems. See health care

systems, evaluation of research data, 14–15 research sources, 14–15

evidence-based medicine, 265 exercise, and obesity, 25–27 Extra bill, 206

F Fadiman, Anne, 58, 270 family

caregiving by, 235–237 labeling of mental illness by, 162–163

family leave programs, 236 family planning, in China, 213 farm workers, migrant, 56 fast-food industry, 27 FDA (Food and Drug Administration),

129, 186 fee-for-service insurance, 173, 175, 201 feeling norms, 147 feeling work, 162 female genital cutting, 83 female sexual dysfunction (FSD), 99, 99 feminist health movement, 258 feminization of aging, 60 fetuses

multiple, 312 rights of, 108–109

fibromyalgia, 8, 101, 104 financial efficiency, health care

system, 201 financial stress, and chronic illness/

disability, 131 financially progressive system, 200 financially regressive system, 200 firearms

mental illness and, 156–157 and premature deaths, 32

Fitbit, 128 Flexner, Abraham, 253 Flexner Report, 253–254 food aid, and malnutrition, 76–77

Food and Drug Administration (FDA), 129, 186

for-profit basis of health care system hospitals, 225, 226 nursing homes, 230 overview, 180, 182–183

for-profit corporations, rise of, 255–256 for-profit drug testing, 318, 319 formularies, 174 Freud, Sigmund, 153–154 FSD (female sexual dysfunction), 99, 99 functionalism, 111 fundamental-cause theory, 48–49 futility of treatment, 313

G gender, 60. See also women

and chronic pain, 123 health status and, 60–65 HIV/AIDS and, 78–79 and illness behavior, 125 and intimate partner violence, 62–63 mental illness and, 142, 143–144 and nursing home usage, 227–228 paternalism and, 269–270 social stress and, 42

gender convergence, 62 gender norms and specialty distribution

of women doctors, 262–263 gender roles, and nursing profession,

279, 280, 282 Genentech, 104 genetic testing, 103 geneticization, 108 geographic accessibility, of health

care, 199 Germany, health care system in, 201,

202, 203–205 gingko biloba, 129 global health, 73 globalization, 23

health care convergence and, 203 health conditions and, 73

GNI (gross national income), 71

388 I N D E X

Goffman, Erving, 154–155 government control of medicine,

256–258 Great Britain

access to health care in, 196–197, 208–209

health care system in, 201, 202, 207–209

Great Confinement, 152–153 gross national income (GNI), 71 guinea pigging, 320 gun control, mental illness and, 156–157

H habitual dispositions, 39 Haiti, earthquake in, 88 Hawaii, health care in, 190–191 HCSA (Health Care Security Act),

175–176 health belief model, 37, 38,

126–128, 127 health care, purchasing. See

purchasing care Health Care and Education

Reconciliation Act, 171. See also Affordable Care Act (ACA, “Obamacare”)

health care convergence, 203 health care providers. See also alternative

health care providers; doctors autonomy and professional status

of, 300 dentists, 288–289 duty to provide care for patients,

256–257 licensed practical nurses, 281 nurse practitioners, 261, 283 nurses, 278–284 nursing assistants, 229, 230, 281 osteopaths, 284–288 pharmacists, 286–287 registered nurses, 237, 281

Health Care Security Act (HCSA), 175–176

health care system. See also access to health care; Affordable Care Act (ACA, “Obamacare”); costs of health care; health care providers; health insurance; hospitals

analysis of, 5–6 in Canada, 181–182, 201, 202,

205–207 in China, 201, 202, 210–213 for chronic illness/disability,

126–128, 127 critical approach to reform, 217–218 in Democratic Republic of Congo,

201, 202, 216–217 evaluation of. See health care systems,

evaluation of fragmented, 180, 181 in crisis, 171, 178–188 in Germany, 201, 202, 203–205 in Great Britain, 201, 202, 207–209 in Hawaii, 190–191 in Mexico, 201, 202, 213–216 in other countries, 201–217, 202 state-level reform of, 190–191 structure of. See health care system

structure health care system structure

in Canada, 205–206 in China, 210–211 in Democratic Republic of Congo,

216–217 in Germany, 203 in Great Britain, 208 in Mexico, 214

health care systems, evaluation of, 197–201

affordability, 200 comprehensive benefits, 200 consumer choice, 201 financial efficiency, 201 geographic accessibility, 199 portability, 198 universal coverage, 197

health care technology. See technology

389I N D E X

health insurance. See also managed care organizations (MCOs); Medicaid; Medicare

commercial, 174 concerns about, 4–5 copayments, 177, 200 deductibles, 177, 200, 203 fee-for-service, 173, 175, 201 government, 173–174 history of, 172–176 underinsured Americans, 189–190 uninsured Americans, 188–189

health lifestyle theory, 37, 38–39, 39 health maintenance organizations

(HMOs), 173, 174 health outcomes. See also infant

mortality; life expectancy in Canada, 207 in China, 212–213 in Germany, 205 in Great Britain, 209 of hospice care, 234 in Mexico, 215–216

health projects, 40 health social movements, 133–134 health status

age and, 59–60 ethnicity and, 52–59, 54 sex/gender and, 60–65 social capital and, 65–66 social class and, 48–51

Hearing Voices Network, 160 hepatitis research, 309–310 herbal remedies, 129 heroic medicine, 251–252 Higgins, Paul, 118 Hippocratic Oath, 305 Hispanic Americans

health status of, 56–57 mental illness in, 143

Hispanic paradox, 56 history

of bioethics, 305–311 of diseases, 10–13 of health insurance, 172–176 of hospitals, 223

increase in life expectancy over, 10–11, 12

of inpatient care, 224 of mental illness treatment, 150–161 of osteopathy, 284, 287–288 of syphilis, 146

HIV/AIDS, 20 in Brazil, 20–21 deaths from, 23 as infectious disease, 22 in less developed nations, 78 in Rwanda, 89 stigma of, 132

Hmong people, 58–59, 270 HMOs (health maintenance

organizations), 173, 174 holistic treatment, 268, 287 home births, 277–278, 295, 296 home care, 234–237 home health aides, 237 homeopathic doctors, 250–251, 253 Horwitz, Allan, 162 hospices, 231

modern, 231–233 origins of, 231 outcomes of care in, 234 use of, 233–234

hospital ethics committees, 316 hospitals

current era of, 225–226 for-profit, 225, 226 history of, 223 medical practices and, 255 modern, 224–225 nursing schools and, 280 patient experience, 226–227 payment. See payment, hospitals premodern, 223–224 private, 225 public, 225, 226 resident training in, 261–262, 264 shift away from, 227 staff of, 278–279 Veterans Administration, 29 voluntary, 224

390 I N D E X

housing federal funding for, 156 poverty and, 50

human immunodeficiency virus (HIV), 20. See also HIV/AIDS

human organs, sale of, 132–133 human traits, enhancements to, 312–313 hunger, and poverty, 50–51 Huntington’s disease, 109

I identity, mental illness and, 164 illicit drug use, and premature

deaths, 34–35 illness, 20. See also interactions around

illness contested, 104, 122 as deviance, 101, 110–111 explanation, across history, 97–98 impact on individual lives, 4–5 language of, 113 medical model of, 98–102, 99 medicalization, 103–108 as moral status, 100 rare, emphasis on medical education,

267, 268 sick role model of, 110–113 social class and, 48–51 as social construction, 101–102 sociological model of, 98–102, 99

illness behavior, 124 gender/age/class/ethnicity and, 125 predicting, 124

illness behavior model, 124 immigrants

diagnosis of mental illness in, 148–149

health status of, 56–57, 58 immorality, and illness, 97 in vitro fertilization, 311, 312 incidence, 21 income, and disability, 121, 121 income gap, within less developed

nations, 72–73

income inequality, 49 individual mandate, ACA, 177 individualism, and right to health

care, 198 infant formula, and infant mortality,

85–86 infant mortality

African Americans, 53 in Canada, 207 in China, 212–213 by country and ethnicity, 53 by development level of country, 72 in Great Britain, 209 Hispanic Americans, 56 infant formula and, 85–86 least developed nations and, 71, 72 in less developed nations, 82, 85–86 in Mexico, 216 Native Americans, 57 neonatal, 57 postneonatal, 57 women’s status and, 82–83

infectious diseases in less developed nations, 77–81 rise in, 22–23 susceptibility to, 30

informed consent, 308, 310 inpatient care

history of, 224 for mental illness, 155

insomnia, 96 institution, 102 institutional review boards (IRBs), 316 insurance premium, 173 integrative medicine, 290 interactions around illness

analysis of, 5 doctor-nurse, 281–282 patient-doctor, 268–271 sick role model and, 110–113

international aid, and malnutrition, 76–77

Internet research sources, 14 and self-diagnosis, 126

391I N D E X

as source of information, 129–131, 258

as supplement to medical care, 261 intersex, sociology of, 64–65 interventions, reliance on, 266–267, 268 intimate partner violence, 62–63 involuntary treatment, and

medicalization, 106–107 Iraq, war in, 87 irregular practitioners, 250, 252

J Japan, tsunami/earthquake in, 88 journals, research published in, 13–14

K kava kava tea, 129 Kevorkian, Jack, 232 kidney dialysis, 308 Kramer, Peter, 312

L label, illness as, 99–102 labeling, mental illness, 161–163 labor migration, and HIV/AIDS, 78 laetrile, 13 Laing, R. D., 154 least developed nations, 71, 73, 201. See

also less developed nations infant mortality, 71, 72 life expectancy, 71, 72

leprosy, 97 less developed nations, 71

causes of death in, 74 chronic diseases in, 74–75 disasters in, 87–88 infant mortality in, 82, 85–86

less developed nations infectious diseases in, 77–81 maternal mortality in, 83–85 overview, 71, 73 parasitic diseases in, 77–81 poverty, malnutrition, and disease in,

75–77, 89–90

respiratory diseases in, 86–87 structural violence in, 88–89 war in, 87

licensed practical nurses, 229, 281 life events, stresses of, 142 life expectancy, 11, 21

of Asian Americans, 53 in Canada, 207 in China, 212–213 by development level of country, 72 by ethnicity and sex, 52 gender and, 61 in Great Britain, 209 health expenses and, 181 of Hispanic Americans, 56 increase in over history, 10–11, 12 least developed nations and, 71, 72 in Mexico, 216 in more developed nations, 181 of Native Americans, 53, 57 sex and, 61

limited practitioners, 290 living will, 4 Luhrmann, T. M., 264 Lunesta.com, 96–97

M ma huang, 129 magic bullets, 101 magnetic healers, 284 malaria, 80–81 malnutrition, in less developed nations,

75–77, 79–80 malpractice suits, 179, 180 mammograms, 259 managed care organizations

(MCOs), 314 employment within, 255 history of, 174–175 hospitals and, 226 medicalization and, 104 and mental illness treatment, 157–158 in Oregon Health Plan, 314 profits in health care and, 255

392 I N D E X

manufacturers of illness, 25, 33 marginal practitioners, 290 marijuana, 122 marketing, by pharmaceutical

industry, 184 mass incarceration, and public health, 55 master status, 154 maternal mortality, in less developed

nations, 83–85 McKinlay, John, 24, 25 MCOs. See managed care organizations

(MCOs) “me-too” drugs, 184 meat and poultry processing industry,

47–48 Mechanic, David, 157 mechanistic model of body, 266, 268 media, and stereotypes about people

with disabilities, 119–120 Medicaid, 34, 173–174, 255, 313

ACA and, 160, 177 consumer choice and, 201 dental care and, 288–289 government control of medicine and,

256–258 in Hawaii, 190 hospitals and, 225 nurse-midwives and, 283–284 nursing home care and, 228, 230 portability of benefits under, 198

medical culture, elements of, 249–250 medical dominance, 278

acupuncture and, 298–299 chiropractic, 291 continued strength of, 259–261 of curanderos, 297–298 decline in, 273 of nurse-midwives, 278 paternalism and, 269–271 rise of, 253–255 threats to, 255–259

medical education duty to provide care and, 257 emotional trauma and, 249–250 ethnicity and, 262–263

Flexner Report on, 253–254 impact of bioethics on, 320–321 for nurses, 280–281 for osteopaths, 286, 287 reform of, 271–272 sex and, 262–263 social class and, 262–263 structure of, 261–262 in 19th century, 251 unintended consequences of, 273 values in, 263–268

medical errors, 28–29 medical ethics, 305 medical futility, 313 medical model

of disability, 118 of illness, 98–102, 99 of mental illness, 145–146, 147

medical norms, 263 medical power of attorney, 4 medical profession in 19th century,

250–252 medical research. See research medicalization, 103

of ADHD, 105 demedicalization and, 107–108 and managed care organizations, 104 overview, 103–104 potentially ill and, 107 unintended consequences of,

105–107 Medicare, 29, 173–174, 209, 255

chiropractors and, 291 consumer choice and, 201 cost shifting in, 201 dental care and, 288–289 government control of medicine and,

256–258 in Hawaii, 190 hospitals and, 225 nursing home care and, 228, 230 profits in health care and, 255

medications antidepressants, 159, 159, 186 antipsychotics, 159, 160, 187

393I N D E X

development of, 184–186 formularies, 174 marketing of, 184, 187 for mental illness, 158–160 patents on, 184 pharmaceutical industry and, 182 race-specific, 185 regulation of, 186–187

medicine, as social control, 102–113 genetic research, 108–110 medicalization. See medicalization overview, 102 sick role and, 110–113

men, as nurses, 282 menopause, 99–100 mental illness

and Affordable Care Act, 160 diagnosis of, 148–149 epidemiology of, 141–145 ethnicity and, 142, 142–143 experience of, 161–164 extent of, 141 gender and, 142, 143–144 and gun control, 156–157 and identity, 164 medical model of, 145–146, 147 politics of diagnosis, 149–150 social capital and, 144–145 social class and, 142, 144 as social condition, 140–141 social stress and, 142 sociological model of, 146–148, 147 treatment. See mental illness treatment

mental illness treatment antipsychiatry critique, 154–155 challenges to, 160–161 deinstitutionalization, 155–156 history of, 150–161 managed care, 157–158 moral, 151–153 overview, 150 psychoanalysis, 153–154 remedicalization, 158–160 before scientific era, 150–151

Mexico health care system in, 201, 202,

213–216 health conditions in, 73

miasma, 97 midwives, 277–278, 283–284, 292–296 Mills, C. Wright, 6, 43 minority group, 119–120. See also

ethnicity; specific minority groups mobile digital health devices, 128 models of illness

medical model of, 98–102, 99 sick role, 110–113 sociological model of, 98–102, 99

moral status, illness as, 100 moral treatment, of mental illness,

151–153 morbidity, 21

sex/gender and, 61 social class and, 49

more developed nations, 71 causes of death in, 74 health care in, 201 health expenses and life expectancy

in, 181 health expenses and number of

doctor visits per year, 179 life expectancy and infant mortality

in, 72 overview, 71, 73 right to health care in, 197, 198–199 United States as, 171

mortality, 21 overtreatment and, 175 social class and, 49

mortality rates of African Americans, 53–54 causes of death, 23–24, 24 gender and, 61 in premodern hospitals, 224 social forces and, 23–24

mortification, 154 motor vehicle accidents, 32–33 Muhammad, Mahabouba, 70–71 “multiple chemical sensitivity,” 134

394 I N D E X

N National Alliance for Caregiving

(NAC), 236 National Alliance for the Mentally Ill

(NAMI), 236 National Center for Complementary

and Alternative Medicine, 290 National Chiropractic Association, 291 National Comorbidity Survey

Replication, 141 national health insurance, 205 National Health Service, 208–209 Native Americans

diseases brought to, 11 health status of, 57 life expectancy of, 53

natural childbirth movement, 295 natural selection, and infectious

disease, 22 Nature, 161 Nazi, and eugenics, 306–307 negative social sanctions, 101 neoliberalism, 176

privatization of health care and, 203 neonatal infant mortality, 57 Netherlands, voluntary euthanasia

in, 233 New England Journal of Medicine, 186 New York University, 272 Nexium, 184 nicotine use, 28 Nightingale, Florence, 279 normality, social ideas about, 100 normalization, of mental illness, 150 norms, 100, 147 Nuedexta, 188 Nuremberg Code, 307, 308, 311 nurse-midwives, 277–278, 283–284 nurse practitioners, 261, 283 nursing

advanced practice, 283–284 changing gender roles and, 282 educational requirements for,

280–281 licensed practical nurses, 229

professional status of, 281–282 rise of, 278–280 structural changes and, 282–283

nursing assistants, 229, 230, 281 nursing homes, 155

care, financing, 228 life in, 229–230 residents of, 227–228 staff of, 229

O Obamacare. See Affordable Care Act

(ACA, “Obamacare”) obesity, and premature deaths, 25–27 occupation, as profession, 254 occupational hazards, 31 opiates, 122 opioids, 35

overdose deaths, 36 Oregon Health Plan (OHP), 313–314 organs, human, sale of, 132–133 osteopathy

education and practice in, 286–287 history of, 284, 287–288 merger with allopathy, 285–286 professionalization of, 284–285

osteopenia, 107 osteoporosis, 107 outpatient care

for illness, 226 for mental illness, 155, 161 shift toward, 227

OxyContin, 122–123

P pain

acute, 122 chronic. See chronic pain

Palmer, Daniel David, 290–291 pandemic, 10 parallel practitioners, 284 parasitic diseases, in less developed

nations, 77–81 Parsons, Talcott, 110–111

395I N D E X

passive euthanasia, 232 patents, for drugs, 184 paternalism, 269–271 patient-doctor relationships, 268–271 patient experience, 161–164, 226–227 Patient Protection and Affordable Care

Act. See Affordable Care Act (ACA, “Obamacare”)

patienthood, 113 “patients’ bills of rights,” 174–175 Paxil, 186–187 pay, doctors

in Canada, 206 in China, 212 in Democratic Republic of

Congo, 217 in Germany, 204 in Great Britain, 208 in Mexico, 215

payment, hospitals in Canada, 206 in China, 212 in Democratic Republic of

Congo, 217 in Germany, 204 in Great Britain, 208 in Mexico, 215

PBA (pseudobulbar affect), 188 performance norms, 147 personal troubles, public issues vs., 6–7 pharmaceutical industry

commercial institutional review boards and, 316

for-profit drug testing in, 320 health care costs and, 182 marketing by, 187 medicalization and, 104 profits of, 184 regulation of drugs and, 186–187 research and development of drugs

by, 184–186 pharmacists, and conscience clauses,

286–287 physician-assisted death, 232 physician extenders, 210 Physicians’ Desk Reference, 187

placebo effect, 217, 251 placebos, 129, 159, 187 Plan B, and abortions, 286–287 political aspects

of diagnosis of mental illness, 149–150

of illness labeling, 101 of medicalization, 106

population with basic activity limitations, 121, 121

portability, of health insurance benefits, 198

positive social sanctions, 101 postneonatal infant mortality, 57 posttraumatic stress disorder

(PTSD), 145 potentially ill, 107 poverty

environmental racism and, 59 of Hispanic Americans, 56 illness and, 48–51, 97–98 in less developed nations, 75–77,

89–90 and social stress, 49–50 and trade in human organs, 133

power, 8. See also medical dominance bioethics and, 322 of health care providers, 180, 182 malnutrition and, 75–76 in medical world, 7 paternalism and, 269

practice protocols, 256 pregnancy, 251–252. See also childbirth

cesarean sections and, 106–107, 266 fetal rights and, 108–109 and maternal mortality, 83–85 obstructed, 70 prenatal sex selection, 84–85 reproductive technology and,

311–312 prejudice, 119 premature deaths, social sources of

alcohol use and, 29–30 bacteria and, 30 diet and, 25–27 exercise and, 25–27

396 I N D E X

premature deaths, social sources of (continued)

firearms and, 32 illicit drug use and, 34–35 medical errors, 28–29 motor vehicle accidents and, 32–33 obesity and, 25–27 overview, 24–25, 26 risk societies and, 31 sexual behavior and, 33–34 tobacco, 27–28 toxic agents and, 31 viruses and, 30

prenatal sex selection, 84–85 prevalence, 21, 211 Prilosec, 184 primary care, 200, 226, 292 primary care doctors, 258, 268 private hospitals, 225 privatization of health care, 203, 209 procedures, and resource allocation, 313 profession, 254 professional dominance, 255. See also

medical dominance professional ethics committees, 317 professional socialization, 263, 273 professionalization, 278

of nurses, 280–283 of osteopathy, 284–285

prostate cancer, testing of, 240–241 pseudobulbar affect (PBA), 188 pseudodisease, 241 psychiatric establishment, labeling of

mental illness by, 163 psychoanalysis, 153–154 PTSD (posttraumatic stress disorder), 145 public health

mass incarceration and, 55 technology/terrorism and, 238

public hospitals, 225, 226 public issues, framing of problems as, 6–7 public support for medical

dominance, 258 purchasing care

in Canada, 206 in China, 211–212

in Democratic Republic of Congo, 217

in Germany, 204 in Great Britain, 208 in Mexico, 214

Q qualitative research, 14–15 quantitative research, 15 Quinlan, Karen, 308

R race. See also ethnicity

health status and, 52–59, 54 and medications, 185 social stress and, 42

random samples, 15, 62, 141, 234, 265

rare illnesses, emphasis on medical education, 267, 268

rate, 20–21 reductionist treatment, 268 reform of medical education,

271–272 registered nurses, 237, 281 regular doctors, 250 regulation, of drugs, 186–187 Reid, T. C., 196–197 reliability, 149 remedicalization, of mental illness,

158–160 reproductive technology, 311–312 research

big data and, 15 bioethics and, 308–311 community advisory boards and, 317 on drugs, 184–186 for-profit drug testing, 320 on hepatitis, 309–310 impact of bioethics on, 318–319 institutional review boards and, 316 random samples in, 141 reliability, 149 sources of, 13–15

397I N D E X

statistical control in, 15, 22, 155 validity, 149

residents, medical, 262, 264 resource allocation, 313–314 resource-based relative value scale

(RBRVS), 257–258 respiratory diseases, in less developed

nations, 86–87 respite care, 236–237 restaurant food, 27 resuscitation efforts, 239–240 retainer-based medicine, 260 right to refuse to treat, 313–314 rights

to die, 232–233, 308 of fetuses, 107–108 to health care, 197, 198–199

risk society, 31 Ritalin, 105 Rodriguez, Gregorita, 297 Rosenberg, Charles, 224 Rosenhan, David, 148 Rothman, David, 317–318, 319 rounds, medical, 7, 264 Rush, Benjamin, 152 Rwanda, HIV/AIDS in, 89

S Salvarsan, 146 sanitation

bottlefeeding and, 85–86 diarrheal diseases and, 80 malnutrition and, 76 maternal mortality and, 83

Saunders, Cicely, 231 “savior siblings,” 222–223 SCHIP (State Children’s Health

Insurance Program), 175 scienciness, 13 scientific thinking, and explanations of

illness, 97–98 selective serotonin reuptake inhibitors

(SSRIs), 159 self-concept, and chronic illness/

disability, 134–135

self-diagnosis, 126 self-fulfilling prophecy, 154 self-labeling, mental illness, 161–162 Sen, Amartya, 76 serial sexual partners, 79 sex, 60. See also women

antidepressant drug use and, 159 disability and, 121, 121 health status and, 60–65 life expectancy by, 52 and medical education, 262–263 prenatal sex selection, 84–85

sexual behavior HIV/AIDS, 79 masturbation, 107 and premature deaths, 33–34

sexual dysfunction, female, 99, 99 sick role model, 110–113, 131 sickness funds, 204 Sims, J. Marion, 306 single-payer system, 181, 205, 207 slang, medical, 264 smoking, 28 social capital, 65–66

and mental illness, 144–145 social class, 48–49

and chronic pain, 123 health differences and, 49–51 and illness behavior, 125 and medical education, 262–263 and mental illness, 142, 144 and nursing home usage, 227–228 paternalism and, 269–270 social stress and, 42

social construction illness as, 101–102 of technology, 239–240

social control, 102 fetal rights and, 108–109 genetic research and, 108–110 intimate partner violence

and, 62 medicine as. See medicine, as social

control of mental illness, 151 sick role and, 110–113

398 I N D E X

social control agents, 102 social drift theory, 49

mental illness and, 144 social epidemiology, 20 social forces

epidemiological transition and, 11–12

health belief model, 37, 38 health lifestyle theory, 37, 38–39, 39 health projects, 40 impact of, 5 mortality rates and, 23–24 social networks, 42–43 stress, 40–41

social insurance, 203 social justice, and right to health care,

198–199 social networks, 42–43 social relationships, chronic illness/

disability and, 131–135 social standing, chronic illness/disability

and, 131–135 social stress, 40–41

gender and, 42 and mental illness, 142 poverty and, 49–50 race and, 42 social class and, 42

social stress theory mental illness and, 144

socialization, professional, 263, 273 socialization effects, and mental illness,

143–144 sociological model

of disability, 118 of illness, 98–102, 99 of mental illness, 146–148, 147

sociological perspective, 6–8 sociology in medicine

mental illness and, 148 overview, 9–10

sociology of medical ethics, 305 sociology of medicine, 9–10 soft drinks, consumption of, 27 sources, of research, 13–15

Southeast Asians, 58 spinal fusion for back pain, geographic

variations in use of, 265 SSRIs (selective serotonin reuptake

inhibitors), 159 St. Christopher’s Hospice, 231 stakeholder mobilization, 172, 176 State Children’s Health Insurance

Program (SCHIP), 175 state-level health care reform, prospects

for, 190–191 stereotypes, 119–120 stigma, 131–133

of charity hospital care, 224 deinstitutionalization and, 155 of mental illness, 145, 161

Still, Andrew Taylor, 284 street doctors, in China, 211 stress, 40. See also social stress structural violence, 88–89 structure, 37 Sub-Saharan Africa, HIV/AIDS in, 78 substance use

alcohol, 29–30 illicit drug, 34–35 tobacco, 27–28, 86–87

symbolic interactionism, 154 syphilis

in China, 211 history of, 146 prevalence of, 211 Tuskegee Syphilis Study, 310–311

T TBI (traumatic brain injury), 145 technological imperative, 240–241 technology, 237

bioethics and, 308 and changing nature of health care,

241–242 CRISPR, 314 and health care costs, 180 nature of, 237–239 social construction of, 239–240

399I N D E X

terrorism and public health, 238 terrorism, technology and public

health, 238 “test-tube baby,” 311–312 testing of drugs, 184–186 Thernstrom, Melanie, 122 Thoits, Peggy, 147 Timmermans, Stefan, 239–240 tobacco use

as cause of death, 24 in less developed countries, 86–87 and premature deaths, 27–28

total institutions, 154, 224 toxic agents, 31 trade, in human organs, 132 training, in medicine

for chiropractors, 291 for dentists, 288 duty to provide care and, 257 emotional trauma and, 249–250 ethnicity and, 262–263 Flexner Report on, 253–254 impact of bioethics on, 320–321 in 19th century, 251 for nurses, 280–281 for osteopaths, 286, 287 reform of, 272 sex and, 262–263 social class and, 262–263 structure of, 261–262 unintended consequences of, 273 values in, 263–268

transgender, health issues, 63–64 traumatic brain injury (TBI), 145 Trebing, Stacy, 222–223 Trump, Donald, 177–178 trust in medicine as institution, 261 tuberculosis, 79 Tuskegee Syphilis Study, 310–311

U uncertainty, mastering, during medical

education, 266, 267–268 underinsured Americans, 189–190

Underwood, Felix J., 294 uninsured Americans, 188–189 unintended negative consequences, 106 universal coverage, 197 university-based drug researchers, 186 U.S. Department of Health and Human

Services, 130 utilization review, 174

V vaccine refusal, 293 validity, 149 values, medical

consequences of, 267–268 learning, 263–267

van Olphen-Fehr, Juliana, 277–278 Vermont, health care in, 190 Veterans Administration hospitals, 29 village doctors, in China, 210 Vincent, Norah, 140–141 violence

intimate partner, 62–63 mental illness and, 156–157 structural, 88–89

viruses, and premature deaths, 30 voluntary hospitals, 224

W war

in less developed countries, 87 veterans, mental illness among,

144, 145 wealth, 48 Weitz, Brian, 304–305 WHO (World Health Organization),

14, 82 Willowbrook Hepatitis Study, 309–310 women. See also childbirth; gender;

pregnancy gender norms and specialty

distribution of women doctors, 262–263

gender roles and nursing profession, 279, 280, 282

400 I N D E X

women (continued) genital cutting, 83 and intimate partner violence,

62–63 mammograms and, 259 medical education and, 262–263 sexual dysfunction, 99, 99 status, and infant mortality, 82–83

World Health Organization (WHO), 14, 82

Y Yale Medical School, 272

Z Zoloft, 186 Zupan, Mark, 135 Zussman, Robert, 305, 321, 322 Zyprexa, 187

Cover
Brief Contents
Contents
Preface
About the Author
Part I: Social Factors and Illness

Chapter 1: The Sociology of Health, Illness, and Health Care

The Sociology of Health, Illness, and Health Care: An Overview
The Sociological Perspective
A Critical Approach
A Brief History of Disease
Understanding Research Sources
Summary
Review Questions
Critical Thinking Questions

Chapter 2: The Social Sources of Modern Illness

An Introduction to Epidemiology
The Modern Disease Profile
The Social Sources of Premature Deaths
The Health Belief Model, Health Lifestyles, and Health "Projects"
Social Stress and Social Networks
Implications
Summary
Review Questions
Critical Thinking Questions

Chapter 3: The Social Distribution of Illness in the United States

Social Class
Race and Ethnicity
Age
Sex and Gender
Social Capital
Implications
Summary
Review Questions
Critical Thinking Questions

Chapter 4: Illness and Death in the Less Developed Nations

Setting the Stage: Key Concepts
Explaining Death and Disease in Less Developed Nations
Implications
Summary
Review Questions
Critical Thinking Questions

Part II: The Meaning and Experience of Illness

Chapter 5: The Social Meanings of Illness

Explaining Illness across History
Models of Illness
Medicine as Social Control
Implications
Summary
Review Questions
Critical Thinking Questions

Chapter 6: The Experience of Disability, Chronic Pain, and Chronic Illness

Understanding Disability
Understanding Chronic Pain
Living with Disability and Chronic Illness
Implications
Summary
Review Questions
Critical Thinking Questions

Chapter 7: The Sociology of Mental Illness

The Epidemiology of Mental Illness
Defining Mental Illness
A History of Treatment
The Experience of Mental Illness
Implications
Summary
Review Questions
Critical Thinking Questions

Part III: Health Care Systems, Settings, and Technologies

Chapter 8: Health Care in the United States

A History of U.S. Health Insurance
The 2010 Patient Protection and Affordable Care Act
The Continuing Crisis in Health Care Costs
The Continuing Crisis in Health Care Access
The Prospects for State-Level Reform
Implications
Summary
Review Questions
Critical Thinking Questions

Chapter 9: Health Care around the Globe

Evaluating Health Care Systems
Health Care in Other Countries
Implications
Summary
Review Questions
Critical Thinking Questions

Chapter 10: Health Care Settings and Technologies

The Hospital
The Premodern Hospital
Nursing Homes
Hospices
Home Care
Health Care Technologies
Implications
Summary
Review Questions
Critical Thinking Questions

Part IV: Health Care, Health Research, and Bioethics

Chapter 11: The Profession of Medicine

American Medicine in the 19th Century
The Rise of Medical Dominance
The Threats to Medical Dominance
The Continued Strength of Medical Dominance
Medical Education and Medical Values
Patient-Doctor Relationships
Reforming Medical Training
Implications
Summary
Review Questions
Critical Thinking Questions

Chapter 12: Other Mainstream and Alternative Health Care Providers

Mainstream Health Care Providers
Alternative Health Care Providers
Implications
Summary
Review Questions
Critical Thinking Questions

Chapter 13: Issues in Bioethics

History of Bioethics
Contemporary Issues in Bioethics
Institutionalizing Bioethics
The Impact of Bioethics
Implications
Summary
Review Questions
Critical Thinking Questions

Glossary
References
Index

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