Beyond the Good Death

The Anthropology of Modern Dying

James W. Green

• Publisher: University of Pennsylvania Press
• Year: 2012
• ISBN:
  9780812202076
• Topic: Scienze sociali
• Subtopic: Antropologia culturale e sociale

In November 1998, millions of television viewers watched as Thomas Youk died. Suffering from the late stages of Lou Gehrig's disease, Youk had called upon infamous Michigan pathologist Dr. Jack Kevorkian to help end his life on his own terms. After delivering the videotape to 60 Minutes, Kevorkian was arrested and convicted of manslaughter, despite the fact that Youk's family firmly believed that the ending of his life qualified as a good death.Death is political, as the controversies surrounding Jack Kevorkian and, more recently, Terri Schiavo have shown. While death is a natural event, modern end-of-life experiences are shaped by new medical, demographic, and cultural trends. People who are dying are kept alive, sometimes against their will or the will of their family, with powerful medications, machines, and "heroic measures." Current research on end-of-life issues is substantial, involving many fields. Beyond the Good Death takes an anthropological approach, examining the changes in our concept of death over the last several decades. As author James W. Green determines, the attitudes of today's baby boomers differ greatly from those of their parents and grandparents, who spoke politely and in hushed voices of those who had "passed away." Dr. Elisabeth Kübler-Ross, in the 1960s, gave the public a new language for speaking openly about death with her "five steps of dying." If we talked more about death, she emphasized, it would become less fearful for everyone.The term "good death" reentered the public consciousness as narratives of AIDS, cancer, and other chronic diseases were featured on talk shows and in popular books such as the best-selling Tuesdays with Morrie. Green looks at a number of contemporary secular American death practices that are still informed by an ancient religious ethos. Most important, Beyond the Good Death provides an interpretation of the ways in which Americans react when death is at hand for themselves or for those they care about.

1 GETTING DEAD

ON A NOVEMBER EVENING IN 1998, a national television audience watched Thomas Youk die at his home in Waterford, Michigan. He did not expect millions to witness his death, but his attending physician thought it was a good idea. Youk actually died several months before the broadcast, but what the audience saw that night on the CBS show 60 Minutes was not a studio recreation but raw footage of his last breath. At fifty-two, he suffered from amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease, in which nerve cells slowly die and muscles atrophy until the heart no longer receives signals from the brain and stops. Like many ALS victims, Youk was lucid but had so little muscular control he feared he would die from choking on his saliva. He and his family were desperate and so contacted a Michigan pathologist with a reputation for assisting in cases like his. Dr. Jack Kevorkian agreed to help.

With over 130 assisted suicides to his credit, Kevorkian was at the height of his notoriety as “Dr. Death.” Flaunting that, he brought his videotape of Youk’s death to CBS, offering it to Mike Wallace for use on his program. Wallace agreed, and on November 22, Kevorkian narrated the video and explained why he wanted it shown nationally. “Either I go or they go,” he said of the prosecutors who for years tried to get homicide convictions from reluctant juries. But Kevorkian’s challenge to the courts in the Youk case was different. Previously, Kevorkian’s clients activated his “suicide machine” themselves, turning a knob or pulling a handle to start the flow of fatal chemicals. But Youk was paralyzed and could not do that, so Kevorkian personally injected the lethal solution into his client’s right arm, which in medicine would be called active euthanasia. Youk died quietly in less than a minute. Weeks later, no arrest had been made, despite the video evidence of what appeared to be a homicide. Kevorkian joked with Wallace about that, asking if the police needed fingerprints. Apparently not. Soon he was arrested, tried for manslaughter, and convicted. A resident of the Lakeland Correctional Facility in southern Michigan, Kevorkian was released in 2007, at age eighty.

Youk’s story, and Kevorkian’s part in it, is notable beyond the details of his death. Tom’s wife said she was relieved that his suffering was finally over, satisfied and appreciative of what Kevorkian had done for them both. A brother described a family at the “end of our rope,” with no other options, and fully supportive of Kevorkian’s help. The CBS program also featured a Chicago physician, appearing as a professional counterbalance to Kevorkian, who commented in shocked tones how sad it all was, saying that much more could have been done to help Youk in his desperation. Yet Wallace himself did not seem interested in exploring one of the obvious themes of this story—the gap between the Youk family’s frustrations and the physician’s assurances that help is available for those who ask. Nor did he pursue the question of whether Youk’s death qualified as a “good” one, a controversial idea debated in the medical literature and well known to the lay public through popular media over several decades. And beyond his dismay at Kevorkian’s enthusiasm for his peculiar cause, Wallace seemed uninterested in why this medical gadfly was a hero to some. That is unfortunate because many 60 Minutes viewers may have had questions about how well the health care system works for people like Youk, what qualifies as a “good death” in an ethical or a religious sense, and how others make hard decisions for themselves and family members when the prospect of a painful death seems unavoidable.

While death is a natural event, in the sense that cells die off and body systems fail, Youk’s experience was shaped by medical, demographic, and cultural trends that are new. They include the demographics of mortality, with more of us living longer and dying later from chronic rather than acute diseases; new medical technologies that prolong life but raise questions about its quality, while dying bodies are kept alive with powerful medications and machines; movements within medicine challenging heroic life-prolonging measures and the traditional view that death is the profession’s enemy; an emerging international system of organ “harvesting” and transplantation; the institutionalization of hospice and palliative care as newer medical specialties; objections to commercial body handling and disposal and the rise of so-called designer deaths, including ecologically friendly ways of disposing of remains; the marginalizing of religion and religious authorities and their replacement by secular grief counselors deploying the rhetoric of psychology rather than theology; spontaneous memorialization at the sites of traffic accidents and national calamities; virtual cemeteries on the Internet and on-demand streaming of videotaped funerals; and ballot box rebellions, successful so far only in Oregon, seeking to legalize physician-assisted suicide. In addition, the most catered-to generation in American history, the baby boomers, are confronting the mortality of their elderly parents and beginning to recognize their own temporal limitations. This new cultural context presents death as less hidden, less explicitly religious, and more individualized.

Not too long ago, things were different. The parents and grandparents of today’s baby boomers did not talk much about death, and when they did it was in a polite, euphemistic, hushed manner. No one died—they “passed away.” Children were usually excluded from those conversations to “protect” them from unpleasantness. The newly bereaved were thought to need more privacy than the rest of us, and what they did in their grief was tightly contained within a closed circle of family members guided by a minister or priest. Nor was death openly discussed with the dying—certainly not by the family and rarely by doctors. Glaser and Strauss (1965) wrote of the decorum of deathbed visitations that typified the 1950s and 1960s. Verbal games of mutual pretense and closed awareness were required of the living as well as the dying; deceit was thought to be a kindness. Some of that has changed, partly due to the polemics of Jessica Mitford (1963), who lampooned the stodgy, occasionally unethical practices of the funeral trade. But more credit goes to Dr. Elisabeth Kübler-Ross (1969), who gave professionals and the public a new language for speaking about death. In plain prose, she redefined death as the last great opportunity for “growth,” a time of personal transformation, even triumph. If we talked more about death, she said, it would become less fearful for everyone. Communication was the key. Her famous five steps of dying, “the way of optimum growth and creative living” (1975: 163), became a mantra in American popular culture, although after an initial enthusiasm, they faded from the nursing, pastoral, and social service journals. Promoting the possibility of a “good death,” even a heroic one, as replacement for the rhetoric of denial was Kübler-Ross’s remarkable achievement. Contemporary popular efforts such as those of Webb (1997) and a host of self-help writers are indebted to Kübler-Ross’s perseverance with an idea that was iconoclastic and not universally appreciated when she first proposed it.¹

Kübler-Ross’s approach was the solution to a problem that engaged other critics as well. Anthropologist Geoffrey Gorer (1965), in his classic study of British death practices, was interested in rituals of mourning, or rather their absence, among men and women of all classes in the UK, a situation he compared to the Victorian banishment of sex from public discussion a century earlier. The same kind of prudery that distanced Victorians from their “natural sexuality,” as he called it, now separated moderns from the healthy effects of public mourning, thereby generating a contemporary “pornography of death.” Based on extensive interviews, he determined that for many in the UK death had become essentially a private, rather than social, experience. Grief was self-focused, rarely shared with friends, and emotionally constrained out of fear of embarrassing oneself and others. And just like Victorian sex, mourning was hidden, little discussed, and kept from the children. “The natural processes of corruption and decay have become [in the modern view] disgusting. . . . Our great-grandparents were told that babies were found under gooseberry bushes or cabbages; our children are likely to be told that those who have passed on (fie! on the gross Anglo-Saxon monosyllable) are changed into flowers, or lie at rest in lovely gardens. The ugly facts are relentlessly hidden; the art of the embalmers is an art of complete denial” (1965: 196).

Writing about the same time but from a more psychodynamic perspective, Ernest Becker, also an anthropologist, advanced his own thesis about the denial of death. There exists in all of us, he claimed, an innate terror of death, but its beneficent effect is that it is also the mainspring of all human cultures and creativity. The Denial of Death (1973) won Becker a Pulitzer Prize for exploring what he called the depth psychology of heroism. We strive to be heroic because that is the only reasonable response to the terrible truth of mortality. We imagine ourselves living in service to a god or laboring to leave a legacy of meritorious works, all in the vain hope that it will open a doorway onto salvation. “It doesn’t matter whether the cultural hero-system is frankly magical, religious, and primitive or secular, scientific, and civilized. It is still a mythical hero-system in which people serve in order to earn a feeling of primary value, of cosmic specialness, of ultimate usefulness to creation, of unshakable meaning” (5). But at their best, these heroic endeavors produce only a “vital lie” that temporarily distracts from our fatal predicament. Apparently, Becker himself was not dismayed by this, attracted as he was to the Danish theologian Søren Kierkegaard and his image of the “knight of faith,” that rare soul who acknowledges and lives the “creative illusion” without assurances of a more permanent place in the cosmos. Becker concluded, “The most that any one of us can seem to do is to fashion something—an object or ourselves—and drop it into the confusion, make an offering of it, so to speak, to the life force” (285).

As discouraging as this argument seems, Becker made it with an unforgiving logic, and he does have contemporary followers. Pyszczynski, Greenburg, and Solomon (1999) have put some of his claims to an empirical test with what they call “terror management theory.” They propose that human belief systems evolved from our hominid ancestors’ discovery of their mortality, and that “cultural worldviews” evolved to help us manage the anxiety that discovery generated. Cultures do this by creating the illusion that each of us is a valuable member of society, and through the psychological mechanism of self-esteem, death is conveniently, if only temporarily, denied. A culture assures us we have a continuing place in the cosmos and that our projects are literally of undying importance. Thus we beat the drums loudly, drowning out the prospect that death is the catastrophic end of everything we have worked so hard for.

The success of this line of argument depends, however, on a willingness to interpret a vast amount of historical and cultural experience using a single causal variable, Becker’s fear of death, to explain the last four million years of human evolution. For some, that kind of reductionism is not immediately convincing. Do we delight in a sunset or the taste of morning coffee only to distract ourselves from thoughts of death? Do we care about friends, family, and who runs the country because we see in that the refraction of a cosmic agenda? Could mythopoetic beliefs about the origins of the universe be satisfying only because they ease a mortal dread and not, as Claude Lévi-Strauss once observed, simply because myths are good to think? The denial of death, where it can be demonstrated to exist, may be more a feature of the historical trajectory of a specific culture than anything innate in human nature.

The influential French historian Philippe Ariès (1974, 1981) produced his own variant of the death-denial thesis, a historical alternative to Becker’s more psychological one. Ariès proposed the idea of the “tame death,” said by him to typify the Middle Ages of Europe and to contrast with the “forbidden” or “invisible” style he says predominates now. In those past times, a tame (really, “tamed”) death began with some kind of clear forewarning, usually physical symptoms, which initiated “a ritual moment” of preparation for dying. First, the ailing person expressed sorrow that his or her life was coming to an end, followed by an expected display of generosity, pardons, and forgiveness given all around. To die unburdened of old grievances sped the soul toward its final reward in paradise. Family, friends, servants, children, neighbors, and even enemies gathered at the bedside for these exchanges, which ended with the dying commending them all to God’s good care. Food, drink, music, and even games were part of this highly social, choreographed event, interspersed with earnest prayers for a comfortable dying and requests for heavenly pardons. Thematically, the emphasis was on the soul’s future, the health and continuity of the family, and the hope of communication with the spiritual world beyond this life. When the bedside ceremonies were completed, everyone waited patiently for death to occur, now tamed because it came under ritual (and God’s) control. At the end, a priest performed absolutions, evoking the authority of the church on behalf of the departed and the bereaved. The entire sequence, which could take days, was organized by the dying person and the family and was understood to be a public occasion that brought the wider community into the home and to the bedside. Decorum and ritual propriety guided the process, everyone knowing exactly what was to be done, and that it would be both memorable and instructive if done well. In Ariès’s view, all this ritual and display took the nasty sting out of dying. “Familiar simplicity is one of the two essential characteristics of this death. The other is its public aspect, which is to last until the end of the nineteenth century. The dying person must be the center of a group of people” (1981: 18).

Ariès’s tamed deaths were scripted in a genre of small books and pamphlets called ars moriendi, copies of which circulated widely among the literate and well-to-do and which described in detail the etiquette of proper dying. An early example is William Caxton’s The Arte & Crafte to Know Well to Dye, which he says he translated “oute of Frenshe in to Englysshe” in 1490 (Atkinson 1992). It opens, “Here begynneth a lityll treatise shorte and abredged spekynge on the arte & crafte to knowe well to dye,” and it continues with sections on planning the well-managed and well-mannered death, temptations faced by the dying and how they can be resisted, questions for leading “the seke persone” to affirm his or her Christian faith, and examples of prayers one can use. All this prescribed activity is to take place at the bedside, preferably in a crowded room filled with onlookers, as the dying person is interrogated by a priest on his or her beliefs and hopes for the afterlife. When correctly and fully done, Caxton says, the confessions, prayers, and pardons model a “studyous exhortacyon” and create an enthusiasm so spirited that “yf it were possyble all, an hole cyte oughte renne hastely to a persone that deyeth,” just to behold a good performance (1992: 31). No doubt, some people did run hastily to the bedside, since any death was a dramatic community event, a chance to witness a soul’s departure to an eternal place populated with “archangelles” and “cherubyns” as well as “patryarkes” and many “vyrgynes and the wydowes” too. Both this life and the hereafter were connected, were intensely social places, and, according to the authors of the many circulating examples of the ars moriendi, were combined in a natural and reasonable state of affairs.

In contrast to the public nature and stylized rhetoric of the tame death, modern deaths seem “invisible,” and Ariès makes clear his disdain for that. In a long chapter entitled “Death Denied,” he describes, as did Becker, “the lie,” a reluctance to speak openly about what happens as we die: “everyone becomes an accomplice to a lie born of this moment which later grows to such proportions that death is driven into secrecy” (1981: 562). Unlike their remote ancestors, modern people avoid the obvious when they are with the dying. At the bedside, they talk not of the soul but about the weather or grandchildren, as though nothing special were happening. Gathered in a terminal ward, family and friends are reduced to onlookers who come to “pay respects” and “show support” but are not sure what to say or how long to stay. The bedchamber, once a small theater of piety, is now a private retreat where physicians replace religious functionaries and hushed discussions of vital signs substitute for affirmations of religious faith. The sights and odors of death are banished, privacy curtains and powerful cleaning agents supplanting public confessions and incense. Even funerals, says Ariès, are “very discrete,” semiprivate events where “the indecency of mourning” (Gorer’s phrase) is concealed and visible control of strong feelings is taken as a sign of “strength.”

In this characterization, is Ariès an old-fashioned romantic yearning for an imagined past? Even if his description of medieval practices is historically accurate, does that mean the customs of the present are, by contrast, a denial? Sociologist Allan Kellehear (1996) suspects not, arguing that all forms of the death-denial hypothesis rest on several assumptions that may not hold. First, “denial” refers to a psychological state, and when used to describe social practices it anthropomorphizes something that more correctly should be thought of as behavioral and the product of a specific historical trajectory. The “fear of death” argument, so strongly held by Freud and his followers, may be more situational than anything innate. Longtime death researcher Robert Kastenbaum (2004) is clear also on this point, that “acceptance” or “denial” is due to a variety of factors, mostly social, and they include the circumstances of a specific case, the range of culturally appropriate responses, and individual needs to compartmentalize strong feelings in order to get through an immediate crisis. It is true that sequestration of the dying has become a common practice and that many doctors are unprepared to talk about death openly with patients and families. But for them that may be a matter of professional training, bureaucratic expediency, and institutional agendas, not a generalized human tendency to “deny” death. Finally, many people in the West have cut themselves off from the guiding religious narratives that inspired their ancestors, from the scripts so well represented in the old ars moriendi, and they look now to the authority of medicine and secular professionals instead for guidance on coping with the end of life. But that does not mean they have lost sight of death’s radical inconvenience, or that they do not think or talk about it in ways illustrative of their time and place. Just in the last few decades a newer set of models, appropriate to the times, has appeared.

UPDATING THE SCRIPT LINES

Ariès’s notion of the tame death, and particularly its secular companion, the “good death,” came into prominence partly as a reaction to the twentieth century’s medicalization and commercialization of life’s end. “Good death” imagery and the hopeful narrative style associated with it became popular because they were ways of thinking about death that were personalized and positive. The expression “good death” entered the public realm through a number of sources: in a genre of published illness narratives or “pathobiographies” generated by AIDS, cancer, and other chronic diseases; through illness-and-struggle confessionals featured on talk shows and in advice columns; in the proliferation of grief specialists—“bereavement counselors”—and their workshops and seminars; and in popular books about death, grief, angels, and out-of-body experiences, their titles aimed with increasing precision at niche markets as varied as those who suffer from pet loss, a gay partner’s death, sibling suicide, or loss of a child. Some titles in this genre have achieved national best-seller status. Betty Eadie’s Embraced by the Light (1992) and Mitch Albom’s Tuesdays with Morrie (1997) are two notable examples.

Implicit in all this publishing, promotion, advising, and inspired healing is the voice of Kübler-Ross, who as a grandmotherly physician and psychiatrist wrote On Death and Dying (1969) and its sequel Death: The Final Stage of Growth (1975) for professional and popular audiences. For her, the important issue was less denial than lack of familiarity: “death has become a dreaded and unspeakable issue to be avoided by every means possible,” while “other societies have learned to cope better with the reality of death than we seem to have done” (1975: 5). Echoing the moral intent of the old ars moriendi, she wr...