This essay asks three questions about death and dying: 1) Why should an entry on such phenomena, which are clearly of interdisciplinary interest, appear in an Topic of sociology? 2) What related topics have been studied by sociology? 3) What issues are currently pending that call for sociological attention?
DEATH AND DYING AS A FIELD OF SOCIOLOGICAL INQUIRY
The answer to the first question is not readily found in the history of sociological thought, although Victor Marshall once bemoaned the fact that Georg Simmel in 1908 had identified but had not pursued the topic as suitable for sociological inquiry, and a half century later the topic was thought to be a neglected area for sociology (Faunce and Fulton 1958). On other hand, Fulton reminds us that ”sociological interest in death is coexistent with the history of sociology” (Fulton and Bendiksen 1994; Fulton and Owen 1988). Both Marshall and Fulton are correct in that the ”interest” has typically been peripheral. Herbert Spencer had noted that social progress depended on the separation of the world of the living from the world of the dead, but that was hardly his central theory. Emile Durkheim’s Suicide depends on an elaborate theory of ”anomie,” not on any theory of death. Max Weber deals with the fact of death in that it interrupts the pursuit of one’s calling—a basic observation later developed by Talcott Parsons. William Graham Sumner wrote widely about such death-related topics as fear of ghosts, mortuary rituals, widowhood, infanticide, war, and even the right to die, but all such references were illustrative of some more general point. In 1956 Herman Feifel chaired a conference on death for the American Psychological Association.
There may well be other precursors, but a bit of history suggests how and when sociology may have staked out its disciplinary claim in a field that had long been cultivated by medicine, theology, ethics, philosophy, law, and psychology.
In May 1967, as part of a new program on ”Death Education” at the University of Minnesota, Robert Fulton, a sociologist, arranged perhaps the first interdisciplinary conference on death and dying in the United States.The purpose of which was to help in ”preserving rather than losing . . . personal identity . . .” when facing death. It was a time of broad and diverse interest in the subject. Examples had been popping up in many domains: Jay Lifton’s notes on the Hiroshima bombing; Eric Lindemann’s report on the psychiatric effects of the disastrous Coconut Grove fire in Boston; Avery Weisman’s clinical studies of dying patients; Lloyd Warner’s interpretation of the meaning of ceremonial events that honor the dead; Herman Feifel’s work on social taboos; Richard Kalish’s early essays on teaching; Parsons’ emerging theory of the relationship of social action to death, and so on. Fulton, clearly aware of these varying expressions of interest, was prompted to try to interpret the diversity and ”get it all together.” What Fulton did in Death and Identity (1965) was to piece together some three dozen edited excerpts from the works of a wide range of experts who had written on an equally wide range of death-related topics. He found American society to be essentially death denying.
The Minnesota Conference, 1967. At the Minnesota Conference of 1967, Alber Sullivan of the Minnesota Medical School and Jacques Choron of the New School of Social Research spoke to various medical and philosophical issues; Jeanne Quint from the University of California reported on the role of the nurse in dealing with terminal patients; Eric Lindemann of Harvard Medical School discussed the symptomatology of acute grief; Herman Feifel of the Veterans Administration, famous for his work on taboos, emphasized that death always carries many meanings; and Talcott Parsons from Harvard probed the topic in broad theoretical terms.
It was a heady agenda but there were some strange omissions. Elizabeth Kubler-Ross, then known to be working on the ”stages” of dying (On Death and Dying, 1969) was scarcely mentioned, nor was much made of the equally influential work of Barney Glaser and Anselm Strauss (1965).The participants in the Minnesota Conference were intrigued by various sociological questions. They wrestled with Karl Mannheim’s thought experiment of what society would be like if there were no death (Mannheim 1928, 1959). They wondered what mortality and fertility rates had been historically and how they are related (cf. Riley and Riley 1986). They debated Robert Blauner’s thesis (Blauner 1966) that death in all known societies imposes imperatives (a corpse must be looked after, property must be reallocated, vacated roles must be reassigned, the solidarity of the deceased’s group must be reaffirmed). They attacked hospital regimens that depersonalized terminal patients, and they challenged the medical profession for treating death as ”the enemy” and prolonging life at any cost.
The conference produced extravagant results in anticipating two critical issues: the norms and arrangements for dealing with dying persons were both confused and hazy; and the greater attention paid to caregivers than to dying persons. But the fact that the conference was consistent in insisting that dying always involves at least two persons turned out to be its most important message for the future agenda. Sociological interest in death and dying, of course, did not start with the Minnesota Conference, but what the conference did was to underscore the often overlooked sociological proposition that the dying process is essentially social in nature.
A REVIEW OF SOCIOLOGICAL INQUIRIES
The answer to the second question about related research is more straightforward. A bit of American history shows the range of topics that has received sociological attention. In the 1930s sociological interest in death and dying had focused mainly on the economic plight of the bereaved family (Eliot 1932). In the 1950s attention turned to the high cost of dying and the commercialization of funerals (Bowman 1959). Twenty years later, it shifted to a medley of popular topics of peripheral sociological interest,such as On the Side of Life; On Dying and Denying; After the Flowers Have Gone; Widow; Caretaker of the Dead; Death in the American Experience; Last Rights; Someone You Love is Dying; The Practice of Death; Grief and Mourning; No More Dying; Life After Life; The Way We Die; Death as a Fact of Life; The Immortality Factor; Facing Death; Death and Obscenity; and Living Your Dying. One sociologist termed that burst of literature a ”collective bustle,” and characterized the ”discovery” of death during the 1970s as ”the happy death movement” (Lofland 1978). There can be no argument that the topic had become more open. Furthermore, the increasing use of life-sustaining technologies dictated that the circumstances of dying became more controllable and negotiable, even as increasing proportions of all deaths were occurring in the later years.
In earlier decades death had been typically viewed as a social transition, as a ”rite de passage,” but new threads running through the literature were emerging. Formal ”arrangements” were being negotiated prior to death, dying persons were generally more concerned about their survivors than they were about themselves, dying individuals were able to exercise a significant degree of control over the timing of their deaths, tensions typically existed between the requirements of formal care and the wishes of dying patients, and similar tensions almost always existed between formal and informal caregivers—be-tween hospital bureaucracies and those significant others who were soon to be bereaved (Kalish 1985a, 1985b; Riley 1970, 1983).
Little systematic attention from sociologists, however, had emerged.Similarly, there are only two indexed references in the 1988 Handbook of Sociology (Smelser 1988): one to poverty resulting from the death of breadwinners, the other to the role of death in popular religion. Sociologists had failed to generate any overarching theory. There have been, however, many attempts. Several kernels illustrate the broad range of these theoretical efforts. Parsons (1963) related the changing meanings of death to basic social values; Mannheim (1928, 1952) used mortality to explain social change; Renee Fox (1980, 1981) found that ”life and death were coming to be viewed less as absolute . . . entities. . . and more as different points on a meta-spectrum..a new theodicity”; Dorothy and David Counts (1985) specified the role of death in the various social transformations from preliterate to modern societies; Paul Baker (1990), following Lloyd Warner (1959) and others (e.g. Kearl and Rinaldi 1983) elaborated the long-recognized theory that images of the dead exert profound influences on the living, and Michael Kearl wrote a more general statement in 1989. And more recently, Fulton has published an essay on ”Society and the Imperative of Death” (1994) in which he discusses the role of such customs and rituals as the Mardi Gras, the bullfight, the ”Dani” of primitive societies, and other symbolic events in which either societal survival or individual salvation is at stake.
One exception to these various theoretical efforts is found in the sustained work of Marshall and collaborators. Starting in 1975 with a seminal article in The American Journal of Sociology,he collaborated with Judith Levy in a review titled ”Aging and Dying” (Marshall and Levy 1990). Marshall began his work with an empirical field study of socialization for impending death in a retirement village, followed by a compelling theoretical essay on age and awareness of finitude in developmental gerontology, and has been consistently engaged in such theoretical efforts. His basic postulate is that ”awareness of finitude” operates as a trigger that permits socialization to death.
Empirical Research Largely Topical. In contrast to theoretical work, the empirical literature shows that sociological research on death and dying has been, and largely continues to be, essentially topical. Studies range widely, from the taboo on death to funerals and the social ”causes” of death (Riley 1983; Marshall and Levy 1990). They include the following examples:
Planning for Death. A national survey conducted in the late 1960s showed that the great majority of Americans (85 percent) are quite realistic and consider it important to ”try to make some plans about death,” and to talk about it with those closest to them (Riley 1970). In addition, bereavement practices, once highly structured, are becoming increasingly varied and individually therapeutic; dying is feared primarily because it eliminates opportunities for self-fulfillment; and active adaptations to death tend to increase as one approaches the end of the life course (i.e. the making of wills, leaving instructions, negotiating conflicts).
Death and Dying in a Hospital. Among such studies, a detailed account of the ”social organization” of death in a public hospital describes rules for dealing with the corpse (the body must be washed, catalogued, and ticketed). Dignity and bureaucratic efficiency are typically found to be at odds (Sudnow 1967). A contrasting account of hospital rules governing disposition of the body in contemporary Ireland is even more sociological in its emphasis (Prior 1989). In another hospital study the ”caring issue” has been seen as the main social problem. The selfhood of the dying person is found to be at risk since the hospital is essentially dedicated to efficiency (Kalish 1985b). However, studies suggest that an increasing proportion of deaths may now be occurring at home or under hospice care, which ”mediates between the families and formal institutions that constitute the social organization of death and dying” (Marshall and Levy 1990; see also Bass 1985).
The Funeral. The funeral as a social institution has long been of sociological concern (cf. Habenstein 1968). For example, a massive cross-cultural study attests to its worldwide function in marking a major social transition (Habenstein and Lamers 1963; Howarth 1996). Durkheim had emphasized its ceremonial role in facilitating social regrouping. Later sociologists have shown that elaborate and extravagant funeral rites may be more reflective of commercial interests than of human grief or mourning (Parsons and Lidz 1967).
The Bereaved Family. The now classic study (Eliot 1932) of the economic consequences of death on the family stimulated a large literature that documents the general proposition that survi-vors—particularly significant others—require various types of social supports to ”get through” the period of intense personal grief and the more publicly expressed mourning. In today’s societies, the time devoted to bereavement activities is generally shorter (Pratt 1981). This is consistent with Parsons’s (1963) position that in societies characterized by an ”active” orientation, the bereaved are expected to carry out their grief work quickly and privately.
Social Stressors as “Causes” of Death. Sociologists and psychologists have investigated a range of individually experienced ”social stressors” as causes of death, such as bereavement and retirement. The hypothesis that a bereaved spouse is at higher risk of death (the ”broken heart” syndrome, or ”death causes death”) has been widely investigated but with no conclusive results. Similarly, retirees in some longitudinal studies have been shown to experience excess mortality, whereas other investigations have reported opposite results. Retirement is a complex process, not a simple or single event, and the mortality impact of retirement is moot.
In an era in which nursing homes play an important role in the lives of many older people, the mortality consequences of relocation have come under critical scrutiny. Several studies have reported that the ”warehousing” of the frail elderly results in increased mortality while in other studies feelings of security in the new ”home” are shown to enhance a sense of well-being resulting in lower mortality. Similar caveats apply to macro-level studies that attempt to relate such collectively experienced stressors as economic depressions, wars, and technological revolutions to trends in mortality. Advances in mathematical modelling and the increasing availability of large and relevant data sets make this problem an attractive area for continuing sociological research (see Riley 1983 for details and sources).
Self-Motivated Death. Durkheim’s studies of suicide spawned a wide, diverse, and sometimes confusing research literature. In most such studies social integration is the operative concept. If the theoretical relationship is believed to be unambiguous, the empirical relationship is far from tidy. The literature is vast and well beyond the reach of this review. Apart from suicide, it is a sociological truism that individuals are often socially motivated to influence the time of their own deaths. It has long been noted, for example, that both Thomas Jefferson and John Adams delayed their dying in order to participate in Independence Day celebrations. Several empirical studies have explored this so-called ”anniversary effect” in which social events of significance are preceded by lower-than-expected mortality (Phillips and Feldman 1973). Such studies rest on Durkheim’s insight that if some people are so detached from society that they commit suicide, others may be so attached that they postpone their deaths in order to participate in social events of great significance (Phillips and Smith 1990). An example of the mortality impact of personal and local events is seen in studies of the ”birthday dip.” One yearlong study, in a test area, coded all obituaries for birthdates. The results were striking. Fewer than 10 percent of the deaths occurred during the three months prior to the birth date, whereas nearly half were reported during the following three months. Along similar lines, several sociological investigations have explored the proposition that some people die socially before they die biologically. These studies center on the notion of ”levels of awareness” of death (Glaser and Strauss 1965). When both the dying person and his or her significant others are cognizant of death as a soon-to-be-experienced event, the ensuing ”open” awareness may enable them to negotiate various aspects of the final phase of life. Other research on ”dying trajectories” involves certainties and uncertainties as to the time of death (Glaser and Strauss 1968).
”The Right to Die.” As a final and critical example in this review of disparate empirical work, a basic and far-reaching question is being asked: Does the individual, in a society deeply committed to the preservation of life, have a ”right” to die? This has become one of the most profound, complex, and pressing issues of our time (Glick 1992). It involves the ”rights” and wishes of the dying person, the ”rights” and responsibilities of his or her survivors, the ”rights” and obligations of attending physicians, and the ”rights” and constraints of the law. The human side of such issues is producing a tidal wave of expressions of public interest in television documentaries, opinion surveys, editorials, pamphleteering, and radio talk shows. The issue of euthanasia is openly debated in leading medical journals, an unthinkable topic only a few years ago. Hospital rules, in which do not resuscitate (DNR) orders were written on blackboards then quickly erased, are being changed. Certain aspects of the issue have reached the Supreme Court.Radical movements have sprung up that advocate active euthanasia and offer recipes for self-deliverance. Final Exit, the Hemlock Society’s handbook, was an instant best-seller (Humphry 1991). The costs of the last days of life have been dramatized, sometimes spoofed as a myth (Alliance for Aging Research 1996), and sometimes reported with great care (Congressional Research Service). Jack Kevorkian, often referred to as ”Dr. Death,” has become both hero and despised public enemy. In short, the problems and dilemmas inherent in the ”management” of death have captured both popular and scientific attention (see various issues of the Hastings Center Reports). In both instances doctors and lawyers play ambiguous but critical roles. It is, however, the ”negotiation” that is of sociological interest. Norms designed to reduce the perplexities in wrenching decisions or to reassure the decision makers (including dying persons) are generally lacking (Wetle 1994). The need for relevant norms governing ”the dying process” has been noted earlier (Riley and Riley 1986), and the main considerations have been specified (Logue 1989). The U. S. Office of Technology Assessment (1987) and the Hastings Center (1987) have issued medical and ethical guidelines, respectively, on the use of life-sustaining procedures. Many years ago sociologists developed research models for studying the social aspects of heroic operations and the treatment of nonsalvageable terminal patients (Fox and Swazey 1974; Crane 1975). Yet models necessary to the formation of norms capable of handling the ”rights” and wishes of the various parties to the process of dying are still clearly needed. Furthermore, the conceptual problem of distinguishing between the two actors in the dying process, which the Minnesota Conference had emphasized, has not been resolved.
With roots in these diverse studies, a set of three issue-laden topics cry out for more research and understanding: 1) dying individuals want a clearer voice in how their last days are to be treated; 2) policy questions are being raised that call attention to potential conflicts between the rights of individuals and the imperatives of society; and 3) programs and campaigns designed to reduce the difficulties of dying are demanding wide social action. These issues can be grouped under three shorthand labels: the living will; assisted suicide; and the quality of dying. While these issues are of great sociological interest, they are only now beginning to be framed in terms for sociological inquiry. The following discussions, consequently, rely largely on commission reports, conferences, public forums, social commentary in the media, brief reports in such journals as Omega, Issues in Law and Medicine, Journal of the American Geriatrics Society, Hospice Journal, and various unpublished materials.
The Living Will. As noted above, one of the most easily understood and practical developments in response to the dilemmas of dying in America is the ”living will,” the so-called durable power of attorney, or some other form of advance directive. These are quasi-legal instruments, signed by the patient, that instruct attending physicians (or surrogates) as to the patient’s preferred treatment at the end of life. Such directives are widely varied as to their specificity and the conditions of application, and it is currently impossible to know how many and what types of directives have been executed. There is, however, ample evidence that they are in widespread use. Simple do-it-yourself forms are available in stationery stores, and countless specialized directives have been developed to cover a wide variety of conditions and contingencies. But both the effectiveness and the ethics of such directives have become subject to wide debate: When and under what conditions is the withdrawal of food or fluids legally and medically permissible? When may guardians or surrogates act for incompetent patients? When does the constitutional right to privacy prevail? Under what conditions may the patient refuse treatment or take the initiative and disconnect respirators or tubes? When do oral directives, if ever, take precedence over written ones? The answers to such questions tend to be moot, although a broad legal doctrine has been promulgated that bears on the availability and use of advance directives. There must be ”clear and convincing evidence” that the directive accurately reflects the patient’s precise intentions— or would in cases of incompetency. This legal dictum, however, has proved to be both burdensome and murky. The well-known Karen Anne Quinlan case is illustrative. This young woman ”existed” in a persistent vegetative state for ten years while the legal process could determine whether Karen’s parents had met the ”clear and convincing evidence” test (Karen’s parents had testified that they knew their daughter well enough to be certain that she would not wish to live in such circumstances). In another widely cited case, Nancy Cruzan ”lived” in a similar state for seven years while the intricacies of the law were being debated. These and other such cases point to the need for more useful and practical evidentiary tests. The Hastings Center published a special supplement titled ”Advance Care Planning” in 1993.
In 1990, the Patient Self-Determination Act (PSDA) raised a set of new questions. The PSDA requires hospitals, nursing homes, and health providers to inform patients of their right to prepare a living will or some document of end-of-life preferences. The significance of the PSDA was underscored by an occasionally distributed joint statement by the American Medical Association and the Harvard Medical School:
Modern medicine can keep one alive long after any reasonable prospect of mental, spiritual, or emotional life is gone. The only way for a person to retain autonomy in such a situation is to record his or her preferences for medical care before they are needed. (Published in The Harvard Health Letter and elsewhere.)
The force of the PSDA, however, has not been great and today it is generally believed that its lasting importance will be found in its power to enhance understanding of the still-developing and changing doctor-patient relationship. Indeed, the drama of that relationship has now been moved to a larger stage that involves both assisted suicide and the quality of dying.
Assisted Suicide. The role of law in cases where patients or their surrogates seek to control end-of-life decisions has always been debated. The early cases in the 1950s and 1960s had revolved around ”informed consent.” This rule surfaced when medical treatments resulted in unanticipated negative consequences, and when it could be shown that the patient had not been informed of the risks. Not surprisingly, this rule led to more complicated ones and, during the 1970s, the increasing demand for patient control resulted in an implied ”right” to die by refusing treatment. Of sociological interest, it was popular experience— not statutory law or court decisions—that was bringing about social change (see M. W. Riley 1978 for a theoretical statement). Nor was it long before demands for the ”right” to receive treatments specifically designed to hasten death were seriously being discussed and in some states actually outlawed. As these events unfolded they have been reported by major news services, and analyzed by Hastings Center reports beginning in 1995.
In 1996 the U.S. Court of Appeals for the Ninth Circuit struck down a Washington state statute that had been passed specifically to deny such a right. The presiding judge included this noteworthy statement:
A competent, terminally ill adult, having lived nearly the full measure of his life, has a strong liberty interest in choosing a dignified and humane death rather than being reduced at the end of his existence to a childlike state of helplessness-diapered, sedated, incompetent.
The case was striking not only for its human interest but also because it invoked the guarantee of personal liberty in the Fourteenth Amendment to the U.S. Constitution. Shortly thereafter a New York statute was struck down by the U.S. Court of Appeals for the Second Circuit (Quill 1996), which had argued that if physicians were allowed to help people die it would put society on a slippery slope leading inevitably to abuse. The court pointed out, however, that physicians are not killers if they prescribe drugs to hasten death any more than they are killers when they discontinue life supports.
As expected, both cases were sent to the U.S. Supreme Court which has, at this writing, let stand state laws that prohibit any form of physician-assisted suicide. But the issue is far from settled. The Court’s decision concluded with this surprising statement by Chief Justice Rehnquist:
Throughout the nation, Americans are engaged in an earnest and profound debate about the morality, legality and practicality of physician-assisted suicide. Our holding permits this debate to continue.
This statement was all the more remarkable since the chief justice, in his long opinion, rejected both the ”liberty” and ”due process” constitutional arguments, but came far short of putting the matter to rest. Indeed, continuing developments indicate that the question of physician-assisted suicide is not likely to go away soon. For example, the State of Oregon has passed two voter referenda, the most recent in 1998 with a 60 percent majority support which makes Oregon the only state (as of 1998) to permit, under strict conditions, physician-assisted suicide. The State of Michigan has rejected an Oregon-type statute and has finally convicted Dr. Kevorkian of second degree murder. Several other states are reported to be experimenting with alternatives that enhance the ”right” of the individual to choose to die (for details of these developments see The Hastings Center reports). It may be that the law is overreaching its capacity to deal with such a basic and philosophical issue. The question is profound. Is there any logical (or sociological) difference between the right to refuse treatment designed to prolong life and a parallel right to receive treatment designed to hasten death? Sociologists would ask: What is the distinction between the acceptance of death and its acceleration? Is the question so abstract that it defies empirical inquiry? Dr. Timothy Quill not only was the main plaintiff in the New York case, but he has become the leading medical voice on issues of assisted suicide. He writes with authority and sensitivity: ”Death seems antithetical to modern medicine— no longer a natural and inevitable part of the life cycle, but a medical failure to be fought off, ignored, and minimized. The dark side of this desperate battle has patients spending their last days in the intensive care units of acute hospitals, tubes inserted into every body part, vainly trying to forestall death’s inevitability. No one wants to die, but if we have to, there must be a better way” (for an account of the issues see Quill 1996).
The Quality of Dying. Sociological concern with assisted suicide has been paralleled with concern for how people die. It had been hoped that the PSDA not only would make advance directives more effective, but would also bring about better communications between doctors and terminal patients. The act, however, was deemed a failure even before it was formally put in place. An impressive experiment, of great sociological interest, was designed to solve these basic issues. Funded and launched by the Robert Wood Johnson Foundation, it was the advance directive problem cast in research terms. The ”Study to Understand Prognoses and Preferences in Risks of Treatment” carried such an unwieldy title that it was quickly shortened to the acronym SUPPORT (for a detailed account see The Hastings Center special supplement that carries the subtitle ”The Lessons of SUPPORT” 1995). Five teaching hospitals were invited to participate in this multimillion dollar project. Phase One called for baseline data on the end-of-life experiences of some 9,000 dying patients. When the data were analyzed, the researchers were not surprised to find much to criticize in various regimens of hospital care. Their main finding, however, was that doctors and attending nurses must attend not only to the physical comfort and pain management needs of patients but, more importantly, to their psychosocial needs.
Phase Two, consequently, called for experimentation. The 9,000 cases were randomized and an experimental intervention consisting of a protocol designed to sensitize doctors to attend more closely to psychosocial needs was administered to one-half of the cases and withheld from the other half, which had served as a control group. The experiment was continued for two years and expectations were high. Much to the chagrin of the study directors, when the two groups were compared, no differences were found! The experimental intervention showed no effects. This negative finding was so shocking that a number of evaluation panels were enlisted to reanalyze the data and scrutinize the research design. Their efforts, however, only served to corroborate the original analysis and Daniel Callahan (1995), then president of The Hastings Center, concluded with this statement, ”This painstaking scrutiny into how people die only goes to show how difficult it is to make the process any better. . . We thought that the care of dying patients could be set right by . . . some good talk between doctor and patient . . . we thought that we just needed reform . . . it is now obvious that we need a revolution” (Callahan 1995).
Callahan’s dramatic statement had the effect of nourishing a spate of organizations and proposals that had sprung up to improve the care of dying patients. For example ”Project Death in America” (PDIA), centered at Sloan Kettering Hospital in New York was funded by the billionaire George Soros; the ”Center to Improve Care of the Dying” (CICD), based in the George Washington Medical School and originally funded by the Retirement Research Foundation in 1995, enjoys wide institutional support and in 1997 launched a program for individual advocacy, ”Americans for Better Care of the Dying” (ABCD); the American Board of Internal Medicine (ABIM) began publishing educational materials on techniques to improve care of the dying in 1996; and the American Medical Association (AMA) began alerting its members to the most recent developments in end-of-life care. And finally, the Robert Wood Johnson Foundation, which has long served as the collective voice for issues on dying, launched ”Last Acts” in 1997, which is designed to involve the public through such participating organizations as the Institute of Medicine, the American Hospital Association, the Health Care Financing Administration, the National Hospice Organization, the Veterans Health
Administration, the American College of Physicians, and a host of specialized associations such as the American Pain Society, the American Cancer Society, Choice in Dying, Partnership for Organ Donation, Memorial Societies of America, Wellness Councils of America, and on and on. Former First Lady Roslyn Carter, in a nationally broadcast speech, proclaimed that, ”We need this coalition so that fewer people will die alone, in pain, and attached to machines, with the result that more people. . . can experience dying for what it ought to be. . . the last act in the journey of life.” The President of the Robert Wood Johnson Foundation was both optimistic and enthusiastic:
With all that is going on. . . we are seizing the moment, “Last Acts” will be much more than platitudes about a good death. . . it will undertake to improve care at the end of life. . . If the campaign succeeds . . . we will find a significant decrease in the number of people dying in pain, an increase in referrals to hospice, more people dying at home outside the hospital, and fewer requests for physician-assisted suicide (1997).
If, however, the campaign does not live up to expectations, the foundation will work with the American Medical Association ”on helping physicians to work with patients on advance care planning, and providing opportunities for physicians to increase their skills in palliative medicine and comfort care.” It is too early to estimate the long-term effects of this blizzard of efforts to improve the way people die, but it is not too early to predict that any improvements in the quality of dying based only on comfort care are likely to be short term. But change is in the air. Dying persons are pressing for more participation in when and how they die, and caregivers are coming under increasing criticism of the limitations of their caring regimens.
AN EVOLVING PERSPECTIVE
As indicated by this review of past research and current issues, the limitations of both legal and medical approaches to the problems of dying in contemporary society mean that the perspectives of sociology will be brought to bear. Perhaps future sociological attention will focus on the uniquely sociological principle that the dying process is not understandable in individual terms. This, in turn, provokes a series of predictions: Sociologists will focus on how dying persons are defined by their survivors and caregivers as well as on the sociological hypothesis that dying persons are more concerned for others than they are for themselves. Sociologists will be required to disentangle the concatenation of forces that has produced today’s caregiving regimens in which terminal patients tend to be treated more as objects than as persons. Sociologists will be asked to explain how the process of socialization has seemingly been reversed, with the individual being figuratively stripped of years of social experience and defined as a nonperson. In effect, sociologists will be asked to explain the historical alchemy whereby dying persons themselves have been conned into believing that all they needed was palliation and comfort care.