Death 1

Chapter 2

The classic deathbed vigil looks something like this: The critically ill person has “taken to bed” in his or her own home to await death. It has become increasingly obvious that the person is nearing death, so family and friends gather to pay their respects (DeSpelder & Strickland, 2014). It is an intimate experience that gives the dying person and the loved ones one last time to reminisce, perhaps make amends, and say good-bye before the last parting. In an earlier day, most people died at home, often in the company of an extended family that included family members from several generations. Throughout the history of Western civilization, the home has been, until recent years, the customary place of passing (Ariès, 1974, 1981). This is still the kind of death many of us imagine.

Today, however, it is increasingly common for loved ones to die in a hospital or nursing home. Although it is now more popular to care for a terminally ill loved one at home with hospice services (Sankar, 1993; also see Chapter 9), in reality in the U.S. slightly less than two-thirds of people needing hospice care die in an institutional setting—about 38 percent in the hospital and about 26 percent in a nursing home or residential palliative care setting, cared for by a paid staff to look after them (Pivodic et al., 2015; see Figure 2.1). In England, about 48 percent of people needing hospice care die in the hospital, 18 percent in a nursing home, and about 12 percent in a residential palliative care setting (Pivodic et al., 2015).

FIGURE 2.1  Percentage of U.S. and English Deaths That Occur in Institutional Settings.

Perhaps sharing a personal experience may be in order here. The death of my mother is probably the single most impactful event to happen to me. Her name was Kay. The last time I saw her alive she was in the intensive care unit, ICU, at St. Joseph’s Medical Center in Burbank, California. This is in the San Fernando Valley, where I grew up. My sister, Peggy, who had moved to Santa Clara three decades before, drove down. She picked me up at the airport and we went straight to the hospital. I had moved some 20 years before, but came home this time because of a phone call, telling me it was unlikely Mom would live much longer. Our brother, Bob, who now lives in northern Idaho, had recently visited Mom and was not able to make the trip again.

Our mom’s ICU room was probably like similar ICU rooms across North America. Although “sterile” and tidy, whoever did the decorating seems to have tried to make the room as comfy as an ICU room can be. The appointments—the bedspread, visitors’ chairs, and privacy curtains—were done in cheery colors, muted pinks and blues. Mom was fully alert but unable to talk because of the intubation equipment that was helping her breath. An electronic monitor digitally displayed her vital signs—heart rate, respiration, blood pressure, and temperature. She was in exactly the situation she had always said she never wanted to be in—immobile and hooked up to tubes. Her wrists were tied to the bed’s railing with “soft ties,” put there to stop her from pulling the tubes out. Although she was fully alert and had all her faculties, in many ways our last visit was pretty much a one-sided affair. We could be with her. We could tell her we loved her. We could touch her. Attached to the ventilator, hooked to tubes, and immobilized with the soft ties, all she could do was use facial expressions and touch to respond to our communication. Chatting and sharing—things that make a conversation real and personal—just weren’t possible. I knew she was happy to see me by the look on her face when I first walked into her room. Two days later, when I had to leave, she was in tears. Our mom, who was 85 at the time, rallied from that episode but would die in another hospital a few short weeks later.

While many people imagine dying at home with loved ones near at hand, in reality more than six out of ten of us will die in an institutional setting, like a hospital or nursing home.

The kind of experience we had with our mom’s death is unashamedly anecdotal, but it is also similar to the experiences of many others. Our mom, one of the seven out of ten elderly people who die in an institutional setting, didn’t have her family and friends with her when she passed.

Before the beginning of the twentieth century, when our society was more agriculturally based, living in an extended family was common—a family pattern in which grandparents, parents, and children all lived in the same home, or at least in the same community. As we became industrialized, the nuclear family emerged—a family pattern in which only parents and their children live together (see, for example, Puschmann & Solli, 2014; Williams, Sawyer, & Wahlstrom, 2012). In these families, once the children grew up, they generally left home to attend college, take jobs, or start their own families, often far from home. As they became established in their own lives this often meant not being nearby as their parents became elderly. Other social changes contributed to death’s move from the home to hospital, including the rise of modern medicine. Today in the West, largely because of social changes that include a high divorce rate, binuclear families, in which children reside with each of their divorced parents for part of the year, and blended families, in which children live with a mix of biological and step-family members, have become common (Kendall, 2015; Williams, Sawyer, & Wahlstrom, 2012).

ADVANCES IN MEDICINE :

The late Michael Kearl, a pioneer in the sociology of death (1989, 1996), commented that until about a century ago Western medicine was a relatively powerless profession, and physicians often did as much harm as good. Beginning in the latter half of the nineteenth century, with the dawning of industrialization and advances that came with the use of the scientific method, modern medicine began to make significant advances in what became a battle with disease. In 1858, Pasteur refined his method of sanitizing foods; in 1864, Lister theorized that doctors spread infection by the microorganisms they carried on their hands; and the germs responsible for such diseases as cholera, tuberculosis, and rabies were identified, which would lead to the diseases themselves being subdued (Goldberg, 1998). By 1935, sulfa, the world’s first antibiotic drug, appeared on the market. Within another ten years, penicillin would follow. An effective treatment for tuberculosis, one of the most lethal diseases of all time, was discovered in the 1950s, a decade that would also usher in the first polio vaccine (Goldberg, 1998).

FIGURE 2.2  Average Life Expectancy by Year of Birth.

By the 1930s, the shift in the usual place of death, from home to hospital, would begin. The trend continued, culminating in the 1950s in a pattern that is consistent with what we know today. This shift is also one of the most commonly cited explanations for our changing perspectives about death (see, for example, Ariès, 1974, 1981; DeSpelder & Strickland, 2014). At an intuitive level, this makes a great deal of sense, since our entire experience with death has changed. We encounter it less often and, when it does occur, it most often happens away from view. We can attribute much of this to the availability of effective treatments and the technological advances that sprang out of an era of booming postwar industrialization and that made theretofore undreamed-of inroads possible. Modern science and technology revolutionized the treatment of disease and increased life expectancy, and as a hallmark of our culture they also helped bring about substantial changes in the way we think, how our families are organized, and how we relate to each other socially.

As you can see from a quick perusal of Figure 2.2, life expectancy in the United States rose dramatically from 1900 to the year 2000. The average person born in 1900 could expect to live about 47 years, whereas those born in the year 2000 can expect to live to about 77 years, depending on race and gender. Not only has life expectancy increased, but advances in medicine have influenced the kind of death we encounter. Whereas in previous eras child deaths were quite common, this is much less true today in developed parts of the world, largely because of the availability of drugs for treating infectious disease that are highly effective and because sophisticated technology is increasingly effective in fending off premature death. As a consequence, the most usual category of persons to die in North America and Europe today is the elderly. And, as we previously discussed, because technology is so integral to the way we treat the seriously ill as well as the seriousness of their disabilities by the time of death, they usually die in an institutional setting. The less common deaths, those that occur among the nonelderly, happen in a variety of settings and by a number of causes, including accidental injury. In North America, death due to natural catastrophe, war, and violence are much less common and public—the recent spate of terrorist attacks in Europe and the U.S. notwithstanding.

WESTERN EXPERIENCE :

With the shift in how we experience death has come a shift in our perspectives about it. Philippe Ariès (1974, 1981), a French historian who was among the first to conduct historical analysis on Western attitudes about death, comments that, although attitudes have always undergone change, it has invariably been gradual—that is, until now.

In our day, in approximately a third of a century, we have witnessed a brutal revolution in traditional ideas and feelings . . . an absolutely unheard of phenomenon. . . . Death, so omnipresent in the past that it was familiar, would be effaced, would disappear. It would become shameful and forbidden.

PHILIPPE ARIÈS,

Western Attitudes toward Death: From the Middle Ages to the Present, 1974, p. 85

Although a thorough discussion of Ariès’s work is beyond the scope of the present discussion, his work does offer a glimpse into perceptions about death that were once experienced as culturally “real” in Western Europe. I hope this recognition also reminds us that our own beliefs and perceptions are conditioned by culture and experience. The five historical perspectives, as outlined by Ariès are the tame death, the death of self, the remote and imminent death, the death of others, and invisible death.

The time of the tame death, according to Ariès, may be the most benign of all with respect to the beliefs and attitudes people had about death. Taking place during the early Middle Ages, this was time when death was experienced as a community event. When someone died, everyone was somehow involved. The dying invariably accomplished the person’s final act at home, surrounded by family, friends, and neighbors. The religious vision underlying the tame death reflected the theology expressed in the Revelation of John, where death was seen as a time of sleep before Christ’s second coming. In Ariès’s description, this was also a fairly benign occasion with respect to expectations of what would happen in an afterlife. Ariès tells us that people during this era believed salvation came not so much as a result of their deeds but by virtue of their baptism and membership in the Church.

During the late Middle Ages, the time of death of self, Ariès (1974, 1981) tells us of a highly individualistic age in which people paid a great deal of attention to how they lived their lives. Saint Benedict, considered by many the father of Western monasticism, suggests, “Keep death daily before you” (Delatte, 1950, pp. 72–74). His message seemed to be that life is all the more precious because the number of our days are numbered. It was a time of personal responsibility. Western society was still very much intertwined with the ethos of the Christian religion, but, in contrast to the era of the tame death, the vision of this next era was more reflective of the kind of eschatological (last things) thinking expressed in the Gospel according to Matthew, with its imagery of Christ on his judgment seat. It was during this era that Dante Alighieri (1265–1321) wrote The Divine Comedy (Alighieri, 1982), with its allegorical vision of the afterlife, which some believe was both the culmination and a reflection of the medieval world view. Influenced by the theological currents of the time, people in Europe during this era were quite concerned about whether they would spend eternity in Heaven or Hell.

In Ariès’s (1974, 1981) scheme, the remote and imminent death is characteristic of the period of time from roughly the beginning of the Renaissance period through the seventeenth century or a little beyond. During this era, Ariès tells us, people paradoxically attempted to push death out of consciousness yet were also strangely fascinated by it. The attitudes during this time, he suggests, were similar to those of the present era.

Ariès (1974, 1981) describes the death of others as an eighteenth- and nineteenth-century attitude toward death that was highly sentimental. It focused not so much on the dead as on the survivors, emphasizing the emotional experience of bereavement.

The type of attitudes toward death we are now encountering in the developed West, Ariès (1974, 1981) calls the invisible death or death denied. Possibly compounded by the youth-oriented nature of society, it is an attitude toward death that sees it as being ignominious and taboo. Ariès contrasts it with the perspectives of earlier eras, which he tells us experienced death as a more common, accepted, visible, and visceral part of everyday life.

Table 2.1 visually summarizes key elements in each of the five Western historical perspectives on death, as outlined by Ariès (1974, 1981).

Five Historical Perspectives on Death in Western Society

This table is based on Ariès, Philippe. (1981). The hour of our death. New York: Alfred A. Knopf

Whereas the rate at which perspectives about death have changed in modern times may be an unheard-of phenomenon, as Ariès puts it, it does parallel the rise of industrialization in the West.

But our machines have now been running seventy or eighty years, and we must expect that, worn as they are, here a pivot, there a wheel, now a pinion, next a spring, will be giving way; and however we may tinker them up for a while, all will at length surcease motion.

Letter of Thomas Jefferson (age 71) to John Adams (age 78), July 5, 1814.

Sherwin B. Nuland, The Way We Die, 2000, p. 44

MODERN TRENDS :

We often regard Thomas Jefferson, the author of the earlier quote and a founding father of the United States, as a visionary figure. Although the technological age did not fully kick into gear in the U.S., so to speak, until about the mid-nineteenth century, the words Jefferson put to paper in 1814, with their mechanistic metaphor, have a prophetic ring, presaging the dawning of an industrial age—a hallmark of life in the modern era.

In the United States, widespread adoption of modern science and research in medicine was facilitated by the publication of the Flexner Report in 1910 (Cooke et al., 2006; Duffy, 2011; Kendall, 1980, 2015). Its author, Abraham Flexner, met with a group of faculty from Johns Hopkins School of Medicine to develop a model of medical education. This established the principle that a medical education should be a scientific endeavor that occurs in medical schools that are financially sound, make use of scientific method, and have state-of-the-art research facilities, a major university affiliation, and a teaching hospital in which their candidates can practice. The report served as a guide for evaluating all 155 medical schools then conducting medical education. Previously, medicine was as much an art as a science. With the wide-scale adoption of the Flexner Report, medical education became transformed. As mentioned earlier, one measure of a nation’s health is average life expectancy. Since the publication of the Flexner Report, the average life expectancy in the United States has climbed and infant mortality has declined. We can probably credit the widespread adoption of scientific medicine as being largely responsible. However, there is also a down side. Although the Flexner Report is often credited with advancing modern medicine in the U.S., it did not come without adverse social consequences (Harp et al., 2016; Kendall, 2015). All but two medical schools that admitted African-Americans during this era were ultimately forced to close because they did not have the financial resources, lab facilities, and university and teaching hospital affiliations demanded by Flexner (Harp et al., 2016; Kendall, 2015; Steinecke & Terrell, 2010). All but one medical school that admitted women were similarly forced to close (Harp et al., 2016; Kendall, 2015).

Jean Quint Benoliel, a longtime nursing educator at the University of Washington, and Lesley Dregner, a researcher at St. Boniface General Hospital in Winnipeg, Manitoba, were part of a growing band of investigators who are also concerned about other adverse consequences: the uncritical acceptance of technology and the dispassionate way we care for the sick and dying (e.g., Callahan, 2000; Cassell, 1993; Kearl, 1996). Benoliel and Dregner (1995) observe, “People’s attitudes and behavior in relation to death and dying have been affected by the secularization of society, the dominance of science over medical practice, and the pressure of an expanding population” (p. 118). They applauded the many advances brought about by science and technology that none of us would want to give up, but they lamented the emergence of some troubling social consequences:

The creation of an assembly line model of work production that operationalizes the historical values of hard work, pragmatism, control over nature, and action . . . encourages a depersonalization of work through fragmentation of the tasks to be done, leading to monotony in many people’s lives.

(BENOLIEL & DREGNER, 1995, P. 119)

This sounds a lot like the observations made by sociologist Émile Durkheim, who took note of the rising sense of alienation and anomie that came into being with industrialization (Durkheim, 1893/1964, 1897/1951).

Benoliel and Dregner expressed concerns about the general dehumanizing side effects of industrialization, but they were particularly troubled by its impact on the way we provide health care and tend to the dying. A large part of this concern revolves around how the principles of scientific empiricism came to dominate the healing arts through the biomedical model, a scientifically based approach to health care that is now the accepted paradigm in Western medicine. They comment, “Applying the reductionistic principles of the physical sciences to the study of disease has led to an objectification of the doctor-patient relationship and a disregard for the social and behavioral factors that affect illness” (Benoliel & Dregner, 1995, p. 120). In short, they express concern that the human element was being lost to a process they call the “industrialization of disease management.”

There is a beloved Jewish tale about Israel ben Eliezer, who lived from 1700 to 1760, and was more commonly known by the title Baal Shem Tov, which means “master of the holy name.” The Baal Shem Tov is the acknowledged founder of the Jewish Chasidic movement. The story is called “The Baal Shem Tov and the Doctor” and appears in Box 2.1. I think it helps bring the scientific and spiritual world views into relief, and speaks to a certain tension between scientific and person-centered orientations—between the ostensibly objective and the admittedly subjective.

BOX 2.1

The Baal Shem Tov and the Doctor :

The highly respected doctor of a certain town had met a patient of his on the street—a man whom he had diagnosed just days before with a broken leg. Seeing that the man was walking about without his crutches, which he had been told not to do, the doctor chewed him out. The man explained that the holy Baal Shem Tov had healed his leg so the crutches were now unnecessary. The doctor was outraged that the Baal Shem Tov was misleading people and giving medical advice without a license, so he went directly to his home to confront him. “Israel ben Eliezer, I want to talk to you,” the doctor shouted through the door. The Baal Shem Tov opened the door. After hearing why the doctor had come, the Baal Shem Tov suggested a contest. Whoever could correctly diagnose what was wrong with the other would prevail in the dispute. The doctor performed a series of tests but could find nothing wrong with the Baal Shem Tov. “You are incorrect. There is something terribly amiss with me,” said the holy man, who then looked deeply into the doctor’s eyes. “I am separated from God and I ache every day of my life because of it. What is wrong with you is that you have even forgotten that you ache.” At this moment the doctor was reminded of something deep and primal in his soul and he began to weep at the realization of what he’d lost.

Source: Adapted from a version told by Doug Lipman; retold with permission. See http://hasidicstories.com.

There are those who were deeply concerned about what we may have lost as a consequence of the uncritical application of scientific empiricism and abuses of the biomedical model. At the heart of these concerns was something one might call an “institutionalized attitude” that became pervasive in medicine (Engel, 1977). It is a perspective that seemed to define health almost purely in physical terms, often as the absence of disease (Benoliel, 1997; Benoliel & Dregner, 1995; Dossey, 1982; Hewa, 1994; Johnson, 1995; Nuland, 1994); that looked on the human body as a machine to be repaired (Benoliel, 1997; Benoliel & Dregner, 1995; Hewa, 1994); that sought to combat and control disease and death as if they were some sort of enemy to be conquered (Callahan, 2000; Hewa, 1994; Nuland, 1994); and that was biased in its priorities by dependence on the requirements of its funding sources (now largely controlled in the U.S. by a system of managed care), the financial interests of pharmaceutical companies, and the allocation of governmental research dollars (Ebert, 1986). Nevertheless, the biomedical model has continued to guide the health care industry as well as its practitioners and technicians (Cassell, 1993).

In the Preface, I briefly reviewed some of Parker Palmer’s work. As you may recall, Palmer was concerned about the adverse effects of our modern educational system as detached and focused on the external. Palmer (1993) believes that the capacity for compassion and empathy is not being adequately addressed with students, and that inner subjective experience is being devalued. He also laments that today’s educational system promotes the separation and compartmentalization of academic disciplines and that encourages people to become manipulators of the environment instead of its stewards.

Sherwin B. Nuland was a physician who wrote a bestselling book on dying, titled How We Die (1994). In this book, Dr. Nuland talks about his own frustrations, for instance, at having to go along with a system that insists that each person who dies must have a specific medical “cause”—an imperative of empiricism and the biomedical system, which likes to establish clear-cut, cause-and-effect relationships. Bridling at the requirement, Nuland commented that, although “old age” sounds too imprecise, the reality is that, as we age, our bodies wear out, and if we don’t die from one thing it’ll be another. He commented, “Whatever scientific diagnoses I have been scribbling on my states’ death certificates to satisfy the Bureau of Vital Statistics, I know better” (pp. 43–44).

The modern mechanistic, empirical model that exerted such a strong influence on science, the social sciences, our biomedical health care system, and, indeed, our culture is now being challenged by new questions and paradigms, which are exposing disquieting problems at the edges of modernity and that are calling into question some of our old assumptions. The sense of certitude that came from the use of science and the scientific method may be taking on a new cast in the light of new discoveries from quantum physics about the remarkable complexity, potentiality, and unpredictability of life. Indeed, we may be awakening to new realities, in which we have come to recognize that we are living with a high degree of uncertainty amid a maelstrom of extremely rapid social change.

A CHANGING WORLD :

To help provide a “framework” for understanding these rapidly changing social realities, sociologists sometimes think of societies in relation to one of the most revolutionary events in human history: industrialization (Puschmann & Solli, 2014). It is the process by which a society uses science and technology to extract raw materials and convert them into finished products. With industrialization, jobs move from the farm to the city and people move with the jobs, giving rise to urbanization, or city living. Today, many believe we are experiencing yet another change, a postindustrial era of rapid change, digital technology, and globalization (Best & Kellner, 1991, 1997, 2001; Kellner, 1990; Ritzer, 1997; Seidman, 1994). These shifts not only influence the way we live but they also change the way we die. Since industrialism is also referred to as modernism, we might wish to refer to these eras as premodern, modern, and postmodern.

Summary of Distinctive Characteristics of Premodern, Modern, and Postmodern Societies :

An emerging postmodern perspective in many fields now uses industrialization and modernity as a point of reference. The postmodern perspective questions the assertions of modernity, suggesting they are really just social constructs that may need to be reconsidered. Table 2.2 attempts to highlight some distinguishing characteristics.

Industrial Revolution and Modernity :

We can think of modernity as the era spanning the period between the dawning of the Industrial Revolution in the mid-eighteenth century until about the middle of the twentieth century. One can argue that the modern social sciences (e.g., anthropology, psychology, and sociology) emerged during this time as the result of the desire to scientifically understand human behavior (Kendall, 2015). Émile Durkheim, an early sociologist (1858–1917), thought that the rapid social changes that were taking place then caused a sense of confusion, or “normlessness,” which he called anomie (Durkheim, 1893/1964, 1897/1951; see also Ritzer, 2000, p. 82). Closely akin to the concept of anomie is the notion of alienation, a term Durkheim used to denote the sense of estrangement from others that results from industrialization.

Peter Berger (1977) suggests that, because of modernization, four major social changes occurred in Western society: (1) the decline of small, traditional communities; (2) an expansion of personal choice; (3) increasing social diversity; and (4) a “future orientation,” with a growing sense of urgency about time.

Today’s world can be understood as one of extremely rapid social change and to some degree confusion.

The shift from premodern to modern was made possible by the acceptance of Newtonian physics, a cornerstone of modern science. With it came the conviction that we could uncover the secrets of the physical universe and unleash new power, which made the industrial age possible. Ultimately, it would lead to the development of modern medicine, and with it the ability to fight disease and prolong life.

Quantum Change :

Arguably, we are on the cusp of yet another time of rapid social change. It may be more accurate to say we are now living in a postmodern world, not a modern one, which is marked by the emergence of quantum science; the growth of digital technology; increasing emphasis on information, computers, and communication; globalization; the rise of consumerism; and, a preoccupation with personal choice (Best & Kellner, 1991, 1997, 2001; Kellner, 1990; Ritzer & Stepnisky, 2013; Seidman, 1994).

So, what do these changes mean? The terms postmodernity and modernity, in contrast to their counterparts postmodernism and modernism, refer to eras, or periods of time, and not to the world views that characterize them (Best & Kellner, 1991, 1997, 2001; Kellner, 1990). Postmodernity, as implied by the term itself, is understood as the epoch following modernity—that period in history when modern empiricism as a philosophical paradigm reigned in the West (see Grassie, 1997; Wilson, 1997). It can be counted as a span of about 200 years between 1789 and 1989. It is sometimes thought to have had its inception in the same zeitgeist that inspired the American and French revolutions. Modernism is a perspective, or world view, that is associated with the scientific model and the Enlightenment-era emphasis in Europe on reason. Modernism, which originated in the West, is a systematic way of thinking that was itself a reaction to the excesses of an earlier paradigm, or model, which we can think of as medieval Christianity. Some suggest that modernity culminated in the collapse of the Berlin Wall—an event that some say marked the end of the Cold War and the start of a new era (Fields, 1995; Oden, 1992; Wilson, 1997).

Stepping out of the vortex and into this age of the postmodern can give rise to a sense of future shock, to use a term first coined by futurist Alvin Toffler (1970). It refers to the natural human reactions to the kind of breakneck change characteristic of life after the mid-twentieth century. To use a metaphor from the motion picture The Wizard of Oz, we may well resonate with the words of Dennis Okholm (1999), professor of theology at Wheaton College, when he says about the postmodern, “I don’t think we’re in Kansas anymore, Toto!”

The advances made in science, technology, and marketing may have outpaced our ability to comprehend and deal with their unanticipated consequences. You may recall the personal tragedy and public turmoil that ensued when the husband of Terri Schiavo, a woman diagnosed as being in a “persistent vegetative state,” asked that her feeding tubes be removed (Weijer, 2005). The strife between family members became fare for the nightly news and a battle on the floor of Congress. The competing social values played out in the media and in the respective positions of her various family members. Terri’s birth family decried the proposed action as murder by starvation while her husband defended the decision as an act of love that honored her previously stated wishes. We address the legal and ethical issues brought about by these and other evolving social changes in Chapters 12 and 13.

CHANGING ATTITUDES :

Human beings may be vulnerable to anomie, alienation, and future shock, but we are also quite capable of embracing those changes that enhance our lives and adjusting to those that don’t. Examples of innovations that have emerged in response to change include the hospice movement, which emphasizes quality of life and comfort care as one approaches the end of life; increasing recognition by health care providers about the importance of the patient’s right to make his or her own decisions about care; and consumer protections against funeral industry abuses.

Professional Attitudes :

Health care providers, therapists, and chaplains are practicing their professions during this time of rapid change and uncertainty. When you think about it, it’s something like playing a high-stakes card game when the rules are changing in the midst of play.

Here, we explore the professional attitudes of those who care for the dying and their loved ones—people such as physicians, nurses, social workers, and chaplains. As I began the research on this topic, I expected professional attitudes to more or less reflect the roles of the players (for example, the doctor), the expectations we have of them, and the situations they’re faced with; however, I learned that trying to get a clear sense of professional attitudes about death and dying from the literature wasn’t nearly as easy as I had hoped.

Literature on Professional Attitudes :

In psychology, an attitude is considered to be a combination of thinking and feeling that influences behavior (see Kalat, 2014). Understanding the attitudes of professionals is important because we will be in a better position to understand why they practice as they do.

When I first went looking in the literature for insight about professional attitudes, what I did not find was a body literature on the global attitudes of health care providers about their work, or their general attitudes on death and dying. What I did find was a range of material on attitudes relating to very specific, narrowly circumscribed, topics. For example, I found articles on medical students’ attitudes about end-of-life decision-making (Hayes, Stoudemire, Kinlaw, Dell, & Loomis, 1999), medical staff’s attitudes toward the distress of cancer patients (DeWalden-Galuszko, Majkowicz, Trzebiatowska, & Kapala, 1998), medical students’ attitudes toward the autopsy (Conrad, Nowacek, Adams, & Smith, 1996), and the personal fear of death among physicians (Hamama-Raz, Solomon, & Ohry, 2000)—a favorite topic of psychologist Herman Feifel, who is often considered a founding father of the modern-day field of thanatology (see Neimeyer & Fortner, 1997, p. 18).

In the early 1950s, Herman Feifel (see Chapter 1) became interested in the attitudes of physicians because of his experience with them when he wanted to talk with patients about their thoughts and feelings about death. Neimeyer and Fortner (1997) commented, “Feifel experienced repeated rebuffs by powerful physicians who blocked his access to patients.” They suggested that, as a result, Feifel became interested in studying the attitudes of the very people who were making his research efforts so difficult.

Despite the patients being eager to talk about end-of-life issues, these physicians restricted Feifel’s access to them on the grounds that they (the physicians) were looking after their patients’ best interests. Neimeyer and Fortner (1997) suggest that as a result of this, and some pilot research that provided tentative support for the idea, Feifel developed a hypothesis that physicians were motivated by their own heightened fears of death—a view consistent with Becker’s (1973) denial-of-death thesis and that is now supported by the research done by proponents of terror management theory (Pyszczynski, Greenberg, & Solomon, 2015; also see Chapter 1). Not a few thanatologists suspect that at least part of the medical profession’s frenetic efforts to conquer disease is related to death anxiety. To paraphrase medical ethicist Daniel Callahan (2000), it sometimes seems as if the field of medicine was attempting to eliminate death, one disease at a time.

Feifel’s explorations into the suspected death anxiety of health care providers marked the beginnings of present-day research into professional attitudes about death. From the time of Feifel’s early investigations, the lion’s share of research had been done on the suspected death anxiety of physicians and other health care providers. Now, an interesting twist is that this research, which began as an open-ended search to understand the blocking behavior of physicians, became a weighty body of work focused on the suspected culprit—death anxiety—a hypothesis that despite having had a fairly long period of time to hatch has gotten only equivocal support from the evidence (for an early review, see Neimeyer & Fortner, 1997).

Although Feifel was interested in psychological explanations for the attitudes and behavior of health care professionals, particularly their suspected fear of death (conscious or unconscious), this topic, like so many others, seems broader and more complex. Attempting to look at it with “fresh eyes,” we can also consider the health care industry, with its many providers and technicians, not only as playing a critical role in safeguarding the public health but also as being integral to our “death system,” a term coined by the late thanatologist Robert Kastenbaum (Kastenbaum, 2016). Perhaps because of its important function, and the success with which it’s able to prevent premature death and extend life, the health care industry continues to enjoy considerable social influence and a high degree of prestige.

Professional Socialization :

Social institutions, like the health care system, are complex, abstract, and very real parts of our social life. But they can’t continue to exist without the human beings who play important parts in making them work. To bring all this down to the level of the individual physician, nurse, psychologist, social worker, and chaplain who work in the system, we might say that each enters his or her chosen field for a variety of reasons. Some are personal—for example, there are individuals who are motivated by their own experiences with severe medical challenges who might either want to give back or fight back. Many choose a career field simply because they want to help. Others are attracted by the prospects of achieving high status or secure incomes. Some very bright and honest people are simply interested in taking advantage of their natural curiosity and interest in solving problems. Whatever the motivation—personal, social, or even spiritual—each individual will need to prepare for his or her career and will need to learn to play his or her role within the larger professional culture of their chosen fields.

Health care providers, human service professionals, and pastoral caregivers are socialized into the beliefs, norms of behavior, values, knowledge bases, and attitudes that are integral parts of their respective professions. And this plays no small role in the attitudes these recruits develop and how they play out their roles when they become fully fledged professionals. In North America and the West, the socialization begins with undergraduate education and, depending on the profession, generally culminates in graduate or professional school.

Physicians, nurses, and human service professionals, in particular, are steeped in scientific method, since medicine, the allied health professions, and the social sciences rest solidly on a foundation of scientific empiricism, as we briefly discussed earlier in the chapter. Pastoral care providers, most of whom have theological degrees, are perhaps less influenced by scientific empiricism since theology has traditionally had closer links to the broader discipline of philosophy, which is more deeply rooted in the humanities. Even this, however, may be changing, since programs that train chaplains to work in hospitals are often hosted at major medical centers, and because the programs themselves often borrow counseling theory and methods, which are rooted in the social sciences.

Technology Dependence :

The medical profession embraces—indeed endorses—technology with little critical examination. It rewards overtesting and overtreating. And worst of all, it has trained an entire generation of doctors—mine—in certain attitudes and thought patterns that are often detrimental to patience care.

DAVID HELLERSTEIN, M.D.

Technology Review, Alumni Association of the Massachusetts Institute of Technology, August/September 1983

Earlier we discussed how professionals have been socialized to play their respective roles in our health care and death systems. In this section, we shift gears a bit, turning our attention to the topic of technology and technology dependence. The previous quote from Dr. Hellerstein’s article speaks to a troubling paradox. On one hand, we are enchanted with modern technology, a child of science. On the other, many of us have a gnawing sense of frustration and concern about the potential consequences of our dependence on this irksome creation of ours.

Like the broom in “The Sorcerer’s Apprentice,” technologies come to have a life of their own . . . Technologies come into being to serve the purposes of their users, but ultimately their users redefine their own goals in terms of the technology.

ERIC J. CASSELL

Professor of Public Health, Cornell University Medical College

Hastings Center Report, November–December, 1993

No matter how we may feel about technology—excited, concerned, or both—one thing seems certain. It has changed the way we provide health care and can be expected to continue to do so for the foreseeable future. Eric Cassell (1993), who is quoted above, comments that technology is “one thing that can be singled out as the engine of the medical economic inflation now occurring everywhere.” It has also changed the attitudes and behavior of the physicians and other health care professionals who provide care. The extensive use of technology is now considered essential to the state of the art when it comes to the standards of medical practice. Conforming to the prevailing standards of practice is not only consistent with medical ethics but it is also vital to clinicians who want to avoid malpractice suits.

The Research Imperative :

Medical ethicist Daniel Callahan (2000), who is quoted elsewhere in this chapter, comments,

For several years, there has been an awareness of the often harmful power of the “technological imperative” in the care of dying patients. . . . There is another imperative that now deserves more attention . . . the research imperative. It stems from the view that medicine has a sacred duty to combat all known causes of death.

Callahan suggests there is a natural tension between this research imperative and what he calls the clinical imperative, which ultimately sees death as a natural part of the life cycle. The research imperative, however, seems to go much further than just this. It is at the core of the natural and social sciences, and as a consequence the way helping professionals understand human nature.

Research produces the knowledge on which most of the helping professions are based. Chapter 1 briefly introduced the topic of research in thanatology, including the topic of research in thanatology that includes quantitative (explanatory) and qualitative (exploratory) approaches. Although there may be a renewed interest in qualitative research methods, at least in some quarters, the quantitative approach to research and the scientific method are still the “cat’s meow” in the sciences—and for good reason. There is no better research model that we know of for determining specific cause-and-effect relationships between variables. Indeed, there is no doubt whatsoever that the knowledge that has come from this model has made possible the phenomenal advances that have taken place in medicine in the last hundred or so years.

The scientific model is parsimonious—simple, effective, and “elegant.” When done well, research using this model leads to results that are highly relevant (valid) to understanding our experiences, as well as being reliable in establishing isolated cause-and-effect relationships between variables. But that word, isolated, is also a clue to something else. The model assumes the need to artificially take whatever phenomenon we want to study out of its natural environment in order to examine it in a controlled atmosphere, often dissecting it in order to do so. If we’re not careful we are likely to end up learning about abstractions in a lab instead of truths about real life.

We tend to train future researchers, clinicians, and helping professionals that, in order to find scientific truth, they need to isolate complex phenomena, remove them from their natural surroundings, and study them in aseptic environments. Indeed, every person who earns an academic degree from a North American or European college or university will have been indoctrinated, to at least some degree, into its tenets by virtue of graduation requirements in the natural and social sciences. This approach to truth-finding, while leading to remarkable advancements, may in some ways be at odds with the more holistic and humane approach to end-of-life care now gaining acceptance.

The Human Imperative: Competence in End-of-Life Care :

There seems to be an increasing recognition that, in its almost single-minded effort to eradicate disease and stave off death, our health care system may have lost touch with the importance of considering the human dimensions of death and dying.

As discussed briefly in Chapter 1, Elisabeth Kübler-Ross (1969), herself a physician and psychiatrist, was a pioneering figure, who was a powerful voice in the cause of understanding and humanizing the experience of death and dying. She deserves much of the credit for ushering in a more integrated approach to dealing with end-of-life issues. She asked us to put a personal face on the experience, astutely subtitling her groundbreaking book (1969) What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families.

If we could combine the teaching of the scientific and technical achievements with equal emphasis on interpersonal human relationships we would indeed make progress.

ELISABETH KÜBLER-ROSS, M.D.

On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families, 1969, pp. 11–12

Out of the groundbreaking efforts of such pioneers as Elisabeth Kübler-Ross, Herman Feifel, and Ernest Becker (see Chapter 1), there are hopeful signs of change in the attitudes of health care professionals. For example, the EPEC Project (1999, 2003; Robinson et al., 2004), an acronym for Education for Physicians on End-of-Life Care, is one such sign. Spearheaded by the American Medical Association with support from the Robert Wood Johnson Foundation, it attempts to provide high-quality training to physicians on caring for those who are at the end of their lives.

Recognizing the omissions of the past, the EPEC Project has acknowledged that “until recently, formal education in end-of-life care has been absent from medical school and residency training . . . most physicians feel ill equipped, if not fearful, to care for the dying” (pp. 1–7). This project seems to have evolved out of a maturing awareness within the medical community itself about disturbing gaps in the ability of physicians to competently and sensitively care for people at the end of their lives. As outlined in the original EPEC Participant Handbook (EPEC, 1999), the EPEC Project’s primary goals are aimed at enhancing physician competence in end-of-life care, strengthening relationships with patients and their families, and enhancing the physicians’ own sense of satisfaction in their work with the dying.

An important part of the EPEC ethos has to do with rediscovering and reclaiming certain core values of medicine that are concerned with care and healing, as well as fostering a collaborative approach to providing treatment, in partnership with nurses, social workers, chaplains, and child life specialists. The kind of collaborative ethos expressed in the EPEC Project, a curriculum developed at Stanford University (Stanford Faculty Development Center, 2003), and others across the U.S. (Stratos et al., 2006), probably reflects the values embodied in the holistic, organic, and ecological principles at the heart of an arguably more enlightened approach to working with death, dying, and bereavement that is emerging in the field today.

Chapter Summary :

We began this chapter by recalling the “classic” deathbed scene, in which the dying person takes to his or her bed and is surrounded by loved ones until the last breath. I recounted my own family’s very different experience, where the last time I saw our mother was in the intensive care unit, ventilator-dependent and restrained with “soft ties” to prevent her from removing the tubes she was connected to. She was one of about two-thirds of people in the U.S. who die each year in a hospital or nursing home. We briefly explored the changing nature of the family, from the extended family with several generations living together, to the modern nuclear family.

Advances in medicine have extended average life expectancy from about 47 years a hundred years ago to over 78 in the U.S. today. These include adoption of the scientific method and resulting in improvements in food sanitation, infection control, medications to treat acute illnesses, and vaccination against disease. We noted that, with the ability to manage disease, we moved the location of treatment, and ultimately death, from the home to institutions.

Next, we explored Western attitudes about death, profiling the historical analysis of Philippe Ariès, who described five eras, each of which can be understood within the context of distinct attitudes about death, from the relatively benign “tame death” to today’s “invisible” or “denied” death.

Then we explored developments that occurred during industrialization, noting the impact of rapidly changing cultural values, technology, and social organization on the way we care for the sick and dying. We noted here the evolution of an almost assembly line model of work through the fragmentation of tasks coupled with a strong work ethic, pragmatism, and a desire to control nature. With this came increasing use of the biomedical model, a scientific approach to health care that became the accepted paradigm in Western medicine.

We also explored the experience of death within the context of a rapidly changing world. With broad strokes, we looked at how our experience with death was changed. With the shift from industrial to postindustrial living, we explored Alvin Toffler’s concept of future shock, which attempts to describe twentieth-century reactions to the quantum changes that seem to characterize life in a postmodern world.

In the concluding section, we looked at the changing attitudes of practitioners, since they both reflect the social milieu we live in and which also help shape it. We learned about a previous generation’s denial of death, professional socialization, technology dependence, the research imperative, and finally the human imperative—a movement that puts the human person at the center and that strives for competence in end-of-life care giving.

Suggested Activities

1.   Try to imagine how you would prefer to die, if you had a choice in the matter. What kind of death would it be? Where would it take place? Who would be there? How would the experience unfold? Engage your imagination as much as you can. To the degree you feel comfortable with this, you may wish to use whatever experiences you already have with death. For instance, you might wish to reflect on your experience with the death of a relative or friend. Again, depending on the level of trust that’s been established in your class, it might be meaningful to share this exercise in a small group or within the context of a class activity.

2.   Put aside about 20 minutes and find a quiet, private place where you can spend some time recollecting any religious or spiritual, thoughts, feelings, or experiences that have helped form your own attitudes about death and dying. Perhaps you’ll just want to brainstorm the topic and write down as many thoughts as you can. Reflect on them. Write about them in your death and dying journal.

3.   Take five minutes and write a paragraph about your personal views of death. What is death? What does it mean to you? You might wish to consult the guidelines found in Neimeyer, Fontana, and Gold (1984).

Links and Internet Resources :

•    The Death Clock www.deathclock.com

Here you will find the Internet’s friendly reminder that life is slipping away. At this site, enter your birthday, body mass index, and whether or not you smoke, and the website will calculate a future death date.

•    The EPEC Project: Education in Palliative on the End-of-Life Care http://bioethics.northwestern.edu/programs/epec

This remarkable program, now housed at Northwestern University’s Feinberg School of Medicine, is devoted to educating physicians on how to provide high-quality end-of-life care. An inspiring effort, it was originally supported by a grant from the Robert Wood Johnson Foundation. There are a number of really fine resources available at, or linked to, this site, but one of the most precious gems to be found here is a current “Participants’ Handbook,” which can be purchased and freely used for nonprofit educational purposes. The original participants’ handbook is still available free of charge at http://endlink.lurie.northwestern.edu/last_hours_of_living/module12.pdf.

•    The Fritjof Capra Home Page www.fritjofcapra.net

Fritjof Capra is the author of several international bestsellers, including The Tao of Physics, The Turning Point, and The Web of Life.

•    Growth House www.growthhouse.org

This site contains an array of online resources, including a “Handbook for Mortals” and a link through which you can access the complete end-of-life curriculum developed by Stanford University School of Medicine (Stanford Faculty Development Center, 2003).

•    Hasidic Stories Homepage http://hasidicstories.com

This is a first-rate website devoted to the telling of Chasidic stories. In addition to the story “The Baal Shem Tov and the Doctor,” which is featured in this chapter, there are numerous others stories in the Chasidic tradition at this site, in addition to other resources.