SOC 5510-4

"LEARNING OBJECTIVESAfter 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 nowstructured.•Assess the benefits and burdens of caring for ill and disabled individuals athome.•Analyze the nature and consequences of health care technologies.Stacy Trebing yanked off the yellow paper hospital gown that covered her shorts andT-shirt, unhooked the surgical mask from behind her ears, and stuffed both itemsinto the garbage pail in the entryway of her daughter’s hospital room. She’d been ather three-year-old daughter’s bedside practically every minute of the past ten days.She needed a breather.The next morning, Stacy’s daughter would have a bone marrow transplant, amedical procedure that would either cure her or kill her. Every minute since Katie’sbirth had been leading to this day. Everything Stacy and her husband, Steve, haddone, every decision they’d made, had propelled them here—including the mostcontroversial of their choices: to [use in-vitro fertilization to] create a new humanbeing they had selected as an embryo because he genetically matched a critical portionof his sister’s DNA.That one-year-old baby would be brought into the hospital the followingmorning to donate the life-changing bone marrow that was the only chance to healhis sister [who had an extremely rare genetic condition that would otherwise requirepainful, debilitating treatments and that would still likely kill her by her forties].Christopher Trebing was born to be a member of the Trebing family [to parentswho 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 repeatedlyinto 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 calledDay Zero. Katie would stay in isolation in her room, and Christopher’s marrowwould be transported in an IV bag and dripped into her. Doctors told Stacy thatbecause it had been so difficult to get an IV into Christopher’s veins during hispreoperative 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 thebioethicists 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"

"LEARNING OBJECTIVESAfter 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 nowstructured.•Assess the benefits and burdens of caring for ill and disabled individuals athome.•Analyze the nature and consequences of health care technologies.Stacy Trebing yanked off the yellow paper hospital gown that covered her shorts andT-shirt, unhooked the surgical mask from behind her ears, and stuffed both itemsinto the garbage pail in the entryway of her daughter’s hospital room. She’d been ather three-year-old daughter’s bedside practically every minute of the past ten days.She needed a breather.The next morning, Stacy’s daughter would have a bone marrow transplant, amedical procedure that would either cure her or kill her. Every minute since Katie’sbirth had been leading to this day. Everything Stacy and her husband, Steve, haddone, every decision they’d made, had propelled them here—including the mostcontroversial of their choices: to [use in-vitro fertilization to] create a new humanbeing they had selected as an embryo because he genetically matched a critical portionof his sister’s DNA.That one-year-old baby would be brought into the hospital the followingmorning to donate the life-changing bone marrow that was the only chance to healhis sister [who had an extremely rare genetic condition that would otherwise requirepainful, debilitating treatments and that would still likely kill her by her forties].Christopher Trebing was born to be a member of the Trebing family [to parentswho 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 repeatedlyinto 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 calledDay Zero. Katie would stay in isolation in her room, and Christopher’s marrowwould be transported in an IV bag and dripped into her. Doctors told Stacy thatbecause it had been so difficult to get an IV into Christopher’s veins during hispreoperative 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 thebioethicists 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"

"however, wealthy Americans began to view these conditions as unacceptable forthose they considered the“deserving”poor—the respectable widow, the workerdisabled by an accident, or the sailor struck by illness far from home. With suchindividuals in mind, philanthropists decided to develop a new form of institution,the hospital, devoted toinpatientcare of the“deserving”sick—so long as theydidn’t suffer from chronic, contagious, or mental illnesses (Rosenberg, 1987:19–20). These hospitals were nonprofit and became known asvoluntary hos-pitalsbecause they relied heavily on unpaid (volunteer) charity work.Although hospitals offered better conditions than did almshouses, theyremained chaotic and dirty places. According to historian Charles Rosenberg:Nurses were often absent from assigned wards and servants insolent orevasive. Chamber pots [used for urinating and defecating] remainedunemptied for hours under wooden bedsteads, and mattresses were stillmade of coarse straw packed tightly inside rough ticking. Vermin con-tinued to be almost a condition of life among the poor and workingpeople who populated the hospital’s beds, and lice, bedbugs, flies, andeven rats were tenacious realities of hospital life (1987:287).These conditions, plus the severe limitations of contemporary medicine,keptmortalityrates high and taught the public to associate hospitals withdeath rather than treatment. To make matters even worse, hospitals functionedastotal institutions(described in Chapter 7) in which patients traded individualrights for health care (Rosenberg, 1987:34–46). Hospital rules regulated patients’every hour, even mandating work schedules for those who were physically capa-ble. Patients who didn’t follow the rules could find themselves thrown into pun-ishment cells or frigid showers.Beginnings of the Modern HospitalGiven the rigors of hospital life, thestigmaof charity that accompanied hospitalcare, and the popular association of hospitals with death, early nineteenth-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 woundedsoldiers led to significant improvements in hospital organization and care, atleast for the better-financed Union Army. These changes demonstrated that hos-pitals need not be either deadly or dehumanizing.After the war, widespread adoption of new ideas about the dangers of germsand the importance of cleanliness helped to make hospitals safer and morepleasant. So, too, did technological changes such as the development of dispos-able gauze and cheaper linens, which made cleanliness feasible (Rosenberg,1987:122–41). Concurrently, population increases (through births and immigra-tion), the movement from farms to overcrowded cities, and the rise of dangerousfactories led to a rise in contagious diseases and in serious accidents. Both thesechanges increased patient demand for hospitals. Meanwhile, doctors’also beganpushing for hospital construction to gain access to new medical technologies andto sterile surgical theaters (Rosenberg, 1987:149)"

"Yet affluent Americans remained generally unwilling to tolerate the condi-tions on even the cleanest hospital wards. As a result, and to compete with thefor-profit, private hospitalsthat began appearing during the second half ofthe nineteenth century, voluntary hospitals developed a class-based system of ser-vices (Rosenberg, 1987:293–94). Those who could pay for private accommoda-tions received better heating and furnishings, exemption from many hospitalrules, and privileges such as more anesthesia during operations. Thus voluntaryhospitals began to lose their ethos of service and became increasingly similar totheir for-profit competitors (Stevens, 1989:112).The Rise of the Modern HospitalBy the early twentieth century, the hospital as we now know it had become animportant American institution and a major site for medical education andresearch. Between 1873 and 1923, the number of hospitals increased from 178to almost 5,000 (Rosenberg, 1987:341). These new hospitals also includedpublic hospitals, established to provide services to those groups—people withmental illnesses, people with chronic illnesses, and the“undeserving poor”—thatvoluntary hospitals considered unworthy, and for-profit hospitals consideredmoney losers. However, African Americans still could obtain care only in a fewsegregated, poorly staffed, and poorly funded wards and hospitals; in municipalhospitals where medical students and residents could learn skills by practicing onAfrican 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 ofacuterather thanchronic illness.Hospitals TodayThe next major change in hospital care in the United States came in 1965, whenthe federal government implementedMedicaidandMedicare. These healthinsurance plans dramatically increased the profits available to hospitals. This inturn led both to a rise in for-profit hospitals and to increasing mergers of hospi-tals into ever-larger for-profit and voluntary hospital chains (such as Humana andSisters of Charity, respectively).As hospital profits grew, so did costs to the federal government via Medicaidand Medicare. As a result, the government for the first time developed a vestedinterest in controlling hospital costs. Ironically, the resulting price-control pro-grams (described in Chapter 8) such asdiagnosis-related groups (DRGs)have 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"

"Yet affluent Americans remained generally unwilling to tolerate the condi-tions on even the cleanest hospital wards. As a result, and to compete with thefor-profit, private hospitalsthat began appearing during the second half ofthe nineteenth century, voluntary hospitals developed a class-based system of ser-vices (Rosenberg, 1987:293–94). Those who could pay for private accommoda-tions received better heating and furnishings, exemption from many hospitalrules, and privileges such as more anesthesia during operations. Thus voluntaryhospitals began to lose their ethos of service and became increasingly similar totheir for-profit competitors (Stevens, 1989:112).The Rise of the Modern HospitalBy the early twentieth century, the hospital as we now know it had become animportant American institution and a major site for medical education andresearch. Between 1873 and 1923, the number of hospitals increased from 178to almost 5,000 (Rosenberg, 1987:341). These new hospitals also includedpublic hospitals, established to provide services to those groups—people withmental illnesses, people with chronic illnesses, and the“undeserving poor”—thatvoluntary hospitals considered unworthy, and for-profit hospitals consideredmoney losers. However, African Americans still could obtain care only in a fewsegregated, poorly staffed, and poorly funded wards and hospitals; in municipalhospitals where medical students and residents could learn skills by practicing onAfrican 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 ofacuterather thanchronic illness.Hospitals TodayThe next major change in hospital care in the United States came in 1965, whenthe federal government implementedMedicaidandMedicare. These healthinsurance plans dramatically increased the profits available to hospitals. This inturn led both to a rise in for-profit hospitals and to increasing mergers of hospi-tals into ever-larger for-profit and voluntary hospital chains (such as Humana andSisters of Charity, respectively).As hospital profits grew, so did costs to the federal government via Medicaidand Medicare. As a result, the government for the first time developed a vestedinterest in controlling hospital costs. Ironically, the resulting price-control pro-grams (described in Chapter 8) such asdiagnosis-related groups (DRGs)have 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"

"More recent cost-containment programs at the state and federal level haveespecially squeezed funding for public hospitals. Under any circumstances, it isdifficult for these hospitals to make ends meet because so many of their patientsgo to public hospitals only because they can’t afford to pay. To cover these costs,public hospitals rely on funding from state and local governments. This funding,however, has declined substantially in recent years, forcing hospitals to cut staff,reduce services, or close altogether.Concern about costs and profits also has affected the mix of services offered byhospitals, especially voluntary and for-profit hospitals. Rather than fightingmanaged careinsurers over which treatments and services the insurers willcover, these hospitals now increasingly offer extra services that patients are willingto pay for out of pocket, such as yoga, meditation, and massage (Abelson andBrown, 2002). Meanwhile, the search for profits has encouraged these hospitals tooffer new, technologically intensive treatments and tests even if evidence of theirbenefits is weak and other nearby hospitals already offer them. The result has beena proliferation of expensive technologies such as magnetic resonance imagingmachines, intensive care units, and open-heart surgical suites. Conversely, anincreasing number of voluntary and for-profit hospitals have closed or shrunkmoney-losing units such as obstetrics wards, emergency departments, and psychiat-ric units. Because of these changes, these hospitals now treat an older and sicker mixof patients, most of whom suffer from the acute complications of chronic illnesses.At the same time, as voluntary and for-profit hospitals have shifted toward pro-viding more intensive care for middle-class Americans, public hospitals haveincreasingly becomeprimary careproviders for the poor. Patients who haveneither health insurance nor money to pay for care sometimes turn to hospitaloutpatientclinics and emergency departments not only for treatment of acuteproblems such as gunshot wounds but also for chronic problems such asbackaches.The Hospital–Patient ExperienceAlthough hospitals no longer terrify and endanger patients as they did in thenineteenth century, a hospital stay still can be alienating and frightening. Thebureaucratic nature and large size of modern hospitals, coupled with the highlytechnological nature of hospital care, often mean that the patient as an individualperson, 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, healthcare workers must respond immediately to their needs and have no time totalk with them to ascertain their preferences—which many are physically inca-pable of expressing in any case. Second, the highly technical nature of hospitalcare encourages staff to focus on the machines and the data these machinesproduce rather than on the patient as a whole person. In the modern obstetricward, for example, workers often focus much of their attention on the elec-tronic 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 on biological issues much more than on patients’psychological or social needs. Fourth, as large institutions necessarily concernedwith costs and profits, hospitals must rely on routines and schedules, with littleleeway for individual needs or desires. Hence the common stories of nursesawakening patients from needed sleep to take their temperature or bloodpressure.The Shift away from HospitalsIncreasingly, changes in financing have led care to move away from hospitals.Because insurers (including Medicare under the DRG system) typically pay hos-pitals only preset amounts for inpatient surgery but will negotiate with hospitalsover payment for outpatient surgery (i.e., surgery given without formally admit-ting the patient to the hospital), many hospitals have opened outpatient surgicalclinics, which they use whenever feasible.Similarly, insurers increasingly are reducing their costs by raising reimburse-ment for outpatient care and lowering it for (less expensive) inpatient care, atrend that theACAfurther encourages. As a result, many hospitals have addedoutpatient medical centers as well as surgical centers. For example, between 2000and 2014, San Diego’s Scripps Health system closed one hospital and added 20outpatient care sites (Vesely, 2014).NURSING HOMESFrom the start, American hospitals focused on caring for acutely ill persons andassumed that families would care for chronically ill persons. During the course ofthe twentieth century, however, average life expectancy increased; families grewsmaller, more geographically dispersed, and less stable; and women less oftenworked at home. As a result, more and more Americans needed to seek long-term care from strangers, andnursing homes—facilities that primarily providenursing and custodial 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 about 16,000 skilled nursing homes in the United States, the majorityrun for profit (US Bureau of the Census, 2013).Gender, Age, Ethnicity, Class, and Nursing Home UsageAbout 1.4 million Americans currently live in nursing homes (National Centerfor Health Statistics, 2014a). Some groups, however, are more likely than othersto find themselves in a nursing home.Most strikingly, women are far more likely than men to become nursinghome residents. Indeed, women now comprise about three-quarters of residents,partly because women more often live long enough to become enfeebled by age" "homes’usual charges. As a result, nursing homes actively work to solicit Medi-care patients and to avoid Medicaid patients. In addition, to free up beds forMedicare patients, nursing homes often move Medicaid patients to less desirableareas (such as dementia wards) or discharge them to lower-quality nursinghomes (Rodriguez, 2014).Working in Nursing HomesNursing home care is extremely labor intensive. To provide this care, nursinghomes rely almost solely onnursing assistants(who often have no training)augmented bylicensed practical nurses(who have completed approximatelyone year of classroom and clinical training).Nationally, nursing assistants (half of whom work in nursing homes andone-quarter in hospitals) form one of the largest and fastest growing health careoccupations (Bureau of Labor Statistics, 2014). Almost all are women, and mostare nonwhite. Many come from Africa, Asia, or Latin America and are not nativeEnglish speakers. These characteristics leave them particularly vulnerable intoday’s shrinking job market, with little ability to fight for better working con-ditions. Indeed, in August 2010, the federal government announced a newcrackdown on employers that pressured nurses at all levels to work unpaid over-time and noted that the pressures on nursing assistants were especially severe(Pear, 2010). Currently, nursing assistants earn a median income of $24,000(Bureau of Labor Statistics, 2014).To understand the life of nursing home residents and the nursing assistantswho care for them, sociologist Timothy Diamond (1992) became certified as anursing assistant and worked for several years in a variety of nursing homes. Hesoon concluded that the core of working as a nursing assistant is caregiving butthat those who train nursing assistants don’t recognize this basic fact. Instead, hisinstructors taught him to recite biological and anatomical terms, measure vitalsigns, and perform simple medical procedures. Instructors divorced these skillsfrom any social context or any sense that their patients were people rather thaninanimate objects. Moreover, the skills Diamond most needed were nevertaught, such as exactly how do you clean an adult who has soiled a diaper in amanner that preserves the individual’s sense of dignity? Only by labeling thiscaregiving as mere physical labor could those who hire nursing assistants labelthem“unskilled”and treat them so poorly.Life in Nursing HomesDiamond’s research underlines how the fates of nursing assistants and nursinghome residents intertwine and how even in the best nursing homes, the eco-nomics of a profit-driven system produce difficult conditions for both. Accordingto Diamond, within nursing homescaregiving becomes something that is bought and sold. This processinvolves both ownership and the construction of goods and services that "homes’usual charges. As a result, nursing homes actively work to solicit Medi-care patients and to avoid Medicaid patients. In addition, to free up beds forMedicare patients, nursing homes often move Medicaid patients to less desirableareas (such as dementia wards) or discharge them to lower-quality nursinghomes (Rodriguez, 2014).Working in Nursing HomesNursing home care is extremely labor intensive. To provide this care, nursinghomes rely almost solely onnursing assistants(who often have no training)augmented bylicensed practical nurses(who have completed approximatelyone year of classroom and clinical training).Nationally, nursing assistants (half of whom work in nursing homes andone-quarter in hospitals) form one of the largest and fastest growing health careoccupations (Bureau of Labor Statistics, 2014). Almost all are women, and mostare nonwhite. Many come from Africa, Asia, or Latin America and are not nativeEnglish speakers. These characteristics leave them particularly vulnerable intoday’s shrinking job market, with little ability to fight for better working con-ditions. Indeed, in August 2010, the federal government announced a newcrackdown on employers that pressured nurses at all levels to work unpaid over-time and noted that the pressures on nursing assistants were especially severe(Pear, 2010). Currently, nursing assistants earn a median income of $24,000(Bureau of Labor Statistics, 2014).To understand the life of nursing home residents and the nursing assistantswho care for them, sociologist Timothy Diamond (1992) became certified as anursing assistant and worked for several years in a variety of nursing homes. Hesoon concluded that the core of working as a nursing assistant is caregiving butthat those who train nursing assistants don’t recognize this basic fact. Instead, hisinstructors taught him to recite biological and anatomical terms, measure vitalsigns, and perform simple medical procedures. Instructors divorced these skillsfrom any social context or any sense that their patients were people rather thaninanimate objects. Moreover, the skills Diamond most needed were nevertaught, such as exactly how do you clean an adult who has soiled a diaper in amanner that preserves the individual’s sense of dignity? Only by labeling thiscaregiving as mere physical labor could those who hire nursing assistants labelthem“unskilled”and treat them so poorly.Life in Nursing HomesDiamond’s research underlines how the fates of nursing assistants and nursinghome residents intertwine and how even in the best nursing homes, the eco-nomics of a profit-driven system produce difficult conditions for both. Accordingto Diamond, within nursing homescaregiving becomes something that is bought and sold. This processinvolves both ownership and the construction of goods and services tha""can be measured and priced so that a bottom line can be brought intobeing. It entails the enforcement of certain power relations and means ofproduction so that those who live in nursing homes and those who tendto them can be made into commodities and cost accountable units(1992:172).In this process ofcommodification, 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 separateareas for residents who are dying, smelly, or psychologically disturbed. Privacy,then, also becomes a commodity that few residents can afford.Nursing assistants, meanwhile, become budgeted expenses, which homes tryto keep to an absolute minimum. This is not hard to do because federal standardsrequire far less staff than is necessary to provide adequate care (Rodriguez, 2014).Yet almost no homes meet even those low standards (Pear, 2008). As a result,nursing home residents are unnecessarily placed at risk for numerous health pro-blems. For example, residents can experience malnutrition when there are insuf-ficient assistants to cut up their food, help them eat, and encourage them to takemore 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 duringthe day so they can be supervised by only a few assistants; one study found that71 percent of new residents received psychiatric drugs even though most hadneither been diagnosed with a psychiatric problem nor received such drugsbefore admission (Molinari et al., 2010).Although all these problems also can occur in nonprofit nursing homes, areview of federal data from all US nursing homes found that both quality oflife and quality of care were significantly worse in for-profit homes (Harringtonet al., 2001). One reason for this is that within the profit-driven system, man-agers constantly stress to staff thatprovidingcare is less important thandocumentingcare. As a sign proclaimed in one nursing home where Diamond worked,“If it’snot charted, it didn’t happen.”For example, state regulations where Diamondworked 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 statenutritional requirements. Yet these cards bore little relationship to reality becausethe appetizing-sounding names given to the foods rarely matched the actualappearance or taste of the food. Nor did the cards note if a resident refused toeat a food because it was cold, tasteless, or too hastily served. Similarly, sanitation regulations required homes to shower residents regularly but did not require thatthe showers be warm. Nor did they require the homes to hire enough nursingassistants so that residents who used diapers could be cleaned as soon as neededor so that residents could get the help they needed in using the toilet and thusavoid the indignity and discomfort of diapers. Unfortunately, more recent research suggests that low reimbursement rates by both Medicare and especiallyMedicaid now encourage nonprofit nursing homes to make similar choices" "Ironically, in top tier nursing homes, the same process of commodification isnow leading nursing home owners toencouragenursing assistants to emphasizecaring 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“fam-ily atmosphere”and get more work from assistants for the same low wages. Butthis“purchased intimacy”—similar to that offered by massage therapists, beauti-cians, and others—is a one-way transaction: Nursing assistants may treat residentslike family, but residents still often sling racist slurs at nonwhite nursing assistants.And even in these“higher-quality”nursing homes, owners rarely allow nursingaides time off to deal with problems in their own families or to grieve whenresidents they cared about die.HOSPICESOrigins of HospiceWhereas nursing homes emerged to serve the needs for long-term care not metby hospitals,hospicesemerged out of growing public recognition that neitherof these options provided appropriate care for the dying.Only in the past few decades has institutional care for the dying become apublic issue. At the beginning of the twentieth century, few individuals experi-enced a long period during which they were known to be dying. Instead, mostsuccumbed quickly to illnesses such as pneumonia, influenza, tuberculosis, oracute intestinal infections, dying at home and at relatively young ages. Now,however, most Americans live long enough to die from chronic rather thanacute illnesses. In addition, as doctors and scientists have developed techniquesfor detecting illnesses in their earliest stages, they now more often identify indi-viduals as terminally ill long before death occurs. Thus, dealing with the dying isto some extent a uniquely modern problem and certainly has taken on auniquely modern aspect.Although modern medical care has proved lifesaving for many, its ability toextend life can turn from a blessing to a curse for those who are dying. (EthicalDebate: A Right to Die?discusses this issue in more detail.) For various reasons,including legal concerns about restricting care, financial incentives for usinghighly invasive treatments, and a medical culture (described in the next chapter)that emphasizes technological interventions, thousands of Americans each yearreceive intensive, painful, and tremendously expensive medical care that offerslittle 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 andcost cutting often results in dying persons receiving only minimal and deperso-nalized custodial care.This lack of appropriate care for the dying led to the development of thehospice movement. The first modern hospice, St. Christopher’s, was foundedin England in 1968 by Dr. Cicely Saunders to address the needs of the dyingand to provide an alternative to the alienating and dehumanizing experi" "hospital death. The hospice admitted only patients expected to die within sixmonths and offered only palliative care (designed to reduce pain and discomfort)rather than treatment or mechanical life supports. The hospice provided careboth in St. Christopher’s and in 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 activists seeking alternatives to hospitals and nursing homes.Public support for hospices was so immediate and so great that in 1982, onlyeight years after the first American hospice opened, Congress approved coveringhospice care under Medicare.Modern HospicesThe US hospice movement has proved enormously successful, growing fromone hospice in 1974 to about 5,500 hospices serving about 1.5 million clientsannually (National Hospice and Palliative Care Organization, 2014). With thatsuccess, however, have come changes. Whereas the original hospices were inde-pendent, freestanding institutions, these days most hospice care is received inhomes and nursing homes. In addition, the original hospices were nonprofitorganizations, primarily staffed by volunteers, that emphasized individualizedcare and patient participation. Now that hospices are primarily funded byinsurers, they have had to reconfigure their staffing and practices to meet stan-dards for care based on hospital protocols. Finally, about two-thirds of all hos-pices are now run on a for-profit basis (National Hospice and Palliative CareOrganization, 2014). For-profit hospices are less likely than other hospices toprovide care at home and are more likely to declare clients ineligible for serviceseven as they get closer to death, apparently to reduce their costs and increasetheir profits (Aldridge et al. 2014). For all of these reasons, hospice care is nowmore cost-oriented and less individualized or patient centered than it wasoriginally.Use of HospiceAbout one-third of those who die in the United States use hospice services, for amedian of 18 days (National Hospice and Palliative Care Organization, 2014).Women and whites are especially likely to use hospice care. In addition, mosthospice clients are older than age 65. Not surprisingly given this age distribution,most hospice clients rely on Medicare to pay the costs (National Hospice andPalliative Care Organization, 2014).Because Medicare only pays for hospice care for six months, hospices losemoney if their clients survive beyond that time period. As a result, hospices dis-proportionately serve individuals with c"

"The financial costs of caregiving are substantial. The demands of caregivingforce many to shift to part-time work or even abandon paid employment. Inaddition, caregivers must purchase, often out of pocket, both expensive drugsand technologies and many everyday items such as diapers and bandages. In addi-tion, caregivers typically are responsible for purchasing a variety of services andtherapies from a range of companies and health care workers.The physical costs also can be high. Caregiving often includes strenuous tasksthat can result in back injuries or exhaustion, such as lifting a physically disabledperson into a bed. The time burdens of caregiving also can become physicallydraining. The typical caregiver spends 20 hours per week on caregiving, doesso for more than four years, and holds at least a part-time job as well. Moreover,many are simultaneously responsible for more than one relative, such as a childwith a disability and a parent with Alzheimer’s disease. Not surprisingly, themore hours individuals spend each day in caregiving and the more months (oryears) they spend in this way, the greater the toll on caregivers’health (NationalAlliance for Caregiving and AARP, 2009).Taken together, the financial and physical burdens of caregiving often leaveindividuals with little time, energy, or money for social relationships. Caregiversoften report that their relationships with both family and friends have sufferedbecause of their responsibilities (National Alliance for Caregiving and AARP,2009). For example, a mother who spends hours each day caring for an illchild might regret that she has so little time for her other children, and thosechildren might resent the attention given to their ill sibling. Problems are partic-ularly acute when the person receiving care is mentally ill and throws familyroutines into chaos, embarrasses other family members, or physically threatenstheir safety (Reinhard and Horwitz, 1996; Tessler and Gamache, 1994).Family life also can suffer when caregiving requires the use of hightechnology within the home. John D. Arras and Nancy NeveloffDubler suggest that this invasion of the home by high-tech medicalprocedures, mechanisms, and supporting personnel exerts a cost in termsof important values associated with the notion of home. How cansomeone be truly“at home,”truly at ease, for example, when his or herliving room has been transformed into a miniature intensive careunit?...Rooms occupied by the paraphernalia of high-tech medicinemay cease to be what they once were in the minds of their occupants;familiar and comforting family rituals, such as holiday meals, may losetheir charm when centered around a mammoth Flexicare bed; andmuch of the privacy and intimacy of ordinary family life may be sacri-ficed to the institutional culture that trails in the wake of high-techmedicine (1995:3).Finally, caregiving brings with it numerous psychological costs. Caregiverscan easily become depressed when their efforts can’tstoporevenslowthedisease process. This is especially true when caregivers must routinely inflictpainful treatments on their charges or when the burdens of caregiving areunceasing, as when a parent must suction the lungs of a child with cystic" "The financial costs of caregiving are substantial. The demands of caregivingforce many to shift to part-time work or even abandon paid employment. Inaddition, caregivers must purchase, often out of pocket, both expensive drugsand technologies and many everyday items such as diapers and bandages. In addi-tion, caregivers typically are responsible for purchasing a variety of services andtherapies from a range of companies and health care workers.The physical costs also can be high. Caregiving often includes strenuous tasksthat can result in back injuries or exhaustion, such as lifting a physically disabledperson into a bed. The time burdens of caregiving also can become physicallydraining. The typical caregiver spends 20 hours per week on caregiving, doesso for more than four years, and holds at least a part-time job as well. Moreover,many are simultaneously responsible for more than one relative, such as a childwith a disability and a parent with Alzheimer’s disease. Not surprisingly, themore hours individuals spend each day in caregiving and the more months (oryears) they spend in this way, the greater the toll on caregivers’health (NationalAlliance for Caregiving and AARP, 2009).Taken together, the financial and physical burdens of caregiving often leaveindividuals with little time, energy, or money for social relationships. Caregiversoften report that their relationships with both family and friends have sufferedbecause of their responsibilities (National Alliance for Caregiving and AARP,2009). For example, a mother who spends hours each day caring for an illchild might regret that she has so little time for her other children, and thosechildren might resent the attention given to their ill sibling. Problems are partic-ularly acute when the person receiving care is mentally ill and throws familyroutines into chaos, embarrasses other family members, or physically threatenstheir safety (Reinhard and Horwitz, 1996; Tessler and Gamache, 1994).Family life also can suffer when caregiving requires the use of hightechnology within the home. John D. Arras and Nancy NeveloffDubler suggest that this invasion of the home by high-tech medicalprocedures, mechanisms, and supporting personnel exerts a cost in termsof important values associated with the notion of home. How cansomeone be truly“at home,”truly at ease, for example, when his or herliving room has been transformed into a miniature intensive careunit?...Rooms occupied by the paraphernalia of high-tech medicinemay cease to be what they once were in the minds of their occupants;familiar and comforting family rituals, such as holiday meals, may losetheir charm when centered around a mammoth Flexicare bed; andmuch of the privacy and intimacy of ordinary family life may be sacri-ficed to the institutional culture that trails in the wake of high-techmedicine (1995:3).Finally, caregiving brings with it numerous psychological costs. Caregiverscan easily become depressed when their efforts can’tstoporevenslowthedisease process. This is especially true when caregivers must routinely inflictpainful treatments on their charges or when the burdens of caregiving areunceasing, as when a parent must suction the lungs of a child with cystic""HEALTH CARE TECHNOLOGIESDoctors and other healers have always used technologies in their work. Twohundred years ago, doctors used knives to cut veins and“bleed”patients oftheir illnesses and used strips of cloth to bandage the wounds afterward. Onehundred years ago, doctors used mercury compounds and electricity in attempt-ing to cure patients of masturbation or syphilis. In modern medicine, health caretechnology includes everything from Band-Aids to computerized patient recordsystems, to heart–lung machines.The Nature of TechnologyTechnologyrefers 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. Forexample, the termtechnologycan refer both to the overall process of kidney dial-ysis and to the equipment used in that process.Although we often talk about technology as if it is inherently either good orbad—“technology has made our lives easier”or“technology has depersonalizedmedical care”—the reality is more complex (Heath, Luff, and Svensson, 2003;Timmermans and Berg, 2003b). The nature of a technology does determinetherangeof ways it might be used, but whether it is harmful, helpful, or bothdepends on who uses it in which ways. Electricity is helpful when used by doc-tors to stimulate muscle healing and harmful when used by doctors who arepoorly educated or who work as torturers in dictatorships. Fetal monitors candepersonalize childbirth when nurses stare at the screens rather than pay attentionto the pregnant woman. But ultrasound imaging of fetuses canpersonalizepreg-nancy when fathers literally visualize their future children as real for the firsttime. In addition, such technologies can create a setting in which fathers,mothers, and health care workers can discuss the emotional aspects of pregnancyand child rearing.Similarly, we often talk about technology as if it is either a blank slate, lack-ing any inherent nature, or a force outside of human control. Again, the reality ismore complex. For example, doctors and hospitals now face considerable pres-sure to collect data on patients, using computerized medical databases in hopesthat doing so will help identify and thus reduce medical errors (Timmermans andBerg, 2003a). Because these databases prompt doctors to ask patients a specific setof questions in a specific sequence, they implicitly encourage doctors to focusonly on certain questions and to organize the answers they receive in certainways. At the same time, doctors quickly learn to regain some control over thedatabases through how they ask their questions and record the answers. Similarly,although doctors who use these databases may press patients to answer specificquestions, patients can assert control by instead addressing a different set of issues(Timmermans and Berg, 2003a).For these reasons, we need to understand not only the nature of a giventechnology but also the cultural system that determines how a technology willbe 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 technol-ogy 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 withtechnology—and with each other.The Social Construction of TechnologyIn the same way that we talk about the social construction of illness, we can talkabout thesocial constructionof technology: the process through which groupsdecide which potential technologies should be pursued and which should beadopted. This concept in turn leads us to question who promotes and who ben-efits from the social construction of any given technology.Like the social construction of illness, the social construction of technologyis a political process, reflecting the needs, desires, and relative power of varioussocial groups. These groups can include manufacturers, doctors, the government,and consumers. As a result, harmful technologies are sometimes developed andadopted, and needed technologies sometimes are not.The history of cardiopulmonary resuscitation (CPR) offers a fascinatingexample of the social construction of technology. (Contemporary Issues: NewbornScreeningdiscusses another example.) The purpose of CPR is to restore life tothose whose hearts and lungs have stopped working. In earlier times, the verynotion of such resuscitation would not have made any sense to doctors or thepublic. Death was considered to be in God’s hands, and dead was dead. Butsince the rise of modern medicine, doctors have struggled to find ways to restorelife to those who die suddenly.At the same time, doctors have grown increasingly able to understand theslow trajectory of dying associated with cancer. And with the rise of the hospicemovement (described earlier in this chapter), both doctors and the public havecome to hold as an ideal the“good death”in which an individual comes toterms with his or her dying, makes peace with family and friends, and receivesappropriate terminal care to minimize physical and emotional suffering.None of this, however, applies to the sudden—and common—deaths causedby stroke or heart disease. In his award-winning bookSudden Death and the Mythof CPR, sociologist Stefan Timmermans (1999) argues that CPR and associatedresuscitation techniques have become part of American medical culture becausethey appear to offer a“good death”in these circumstances. Innumerable televi-sion dramas portray heroic doctors who save apparently dead patients throughCPR, and millions of dollars have been spent teaching the general public to per-form CPR and outfitting community emergency response teams and hospitalemergency rooms with resuscitation equipment. Yet CPR almost never succeedsexcept when healthy individuals drown or are struck by lightning. The typicalperson who receives CPR hasat besta 1 to 3 percent chance—and probablymuch less—of surviving, at an estimated cost of $500,000 per survivor. More-over,“survival”may be brief and may be accompanied by severe neurologicaldamage. As a result, according to Timmermans, emergency department doctor" "how society and social actors shape the use of technology but also how technol-ogy 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 withtechnology—and with each other.The Social Construction of TechnologyIn the same way that we talk about the social construction of illness, we can talkabout thesocial constructionof technology: the process through which groupsdecide which potential technologies should be pursued and which should beadopted. This concept in turn leads us to question who promotes and who ben-efits from the social construction of any given technology.Like the social construction of illness, the social construction of technologyis a political process, reflecting the needs, desires, and relative power of varioussocial groups. These groups can include manufacturers, doctors, the government,and consumers. As a result, harmful technologies are sometimes developed andadopted, and needed technologies sometimes are not.The history of cardiopulmonary resuscitation (CPR) offers a fascinatingexample of the social construction of technology. (Contemporary Issues: NewbornScreeningdiscusses another example.) The purpose of CPR is to restore life tothose whose hearts and lungs have stopped working. In earlier times, the verynotion of such resuscitation would not have made any sense to doctors or thepublic. Death was considered to be in God’s hands, and dead was dead. Butsince the rise of modern medicine, doctors have struggled to find ways to restorelife to those who die suddenly.At the same time, doctors have grown increasingly able to understand theslow trajectory of dying associated with cancer. And with the rise of the hospicemovement (described earlier in this chapter), both doctors and the public havecome to hold as an ideal the“good death”in which an individual comes toterms with his or her dying, makes peace with family and friends, and receivesappropriate terminal care to minimize physical and emotional suffering.None of this, however, applies to the sudden—and common—deaths causedby stroke or heart disease. In his award-winning bookSudden Death and the Mythof CPR, sociologist Stefan Timmermans (1999) argues that CPR and associatedresuscitation techniques have become part of American medical culture becausethey appear to offer a“good death”in these circumstances. Innumerable televi-sion dramas portray heroic doctors who save apparently dead patients throughCPR, and millions of dollars have been spent teaching the general public to per-form CPR and outfitting community emergency response teams and hospitalemergency rooms with resuscitation equipment. Yet CPR almost never succeedsexcept when healthy individuals drown or are struck by lightning. The typicalperson who receives CPR hasat besta 1 to 3 percent chance—and probablymuch less—of surviving, at an estimated cost of $500,000 per survivor. More-over,“survival”may be brief and may be accompanied by severe neurologicaldamage. As a result, according to Timmermans, emergency department doctor"