Kenneth J Doka. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1: The Presence of Death. Thousand Oaks, CA: Sage Reference, 2003.
The term death awareness movement refers to a somewhat amorphous yet interconnected network of individuals, organizations, and groups. This movement includes scholars, advocates, and counselors. It encompasses self-help networks such as the Compassionate Friends and professional associations such as the Association for Death Education and Counseling, the International Work Group on Dying, Death and Bereavement, and the National Hospice and Palliative Care Organization, as well as their members, affiliates, and regional and state counterparts. Most hospices and palliative care units would identify with the death awareness movement, as would many funeral service organizations. Foundations such as the Hospice Foundation of American and the Project on Death in American Society are involved, as are varied institutes and interorganizational committees and task forces. Many large organizations with broad and diffuse memberships and goals may focus some attention on end-of-life issues and on research or education concerning dying and death; for example, the American Psychological Association has a specialized task force on end-of-life issues. A number of scholarly journals (such as Omega; Death Studies; Loss, Grief and Care; and Mortality) as well as newsletters (such as Journeys, Thanatos, and The Forum) focus exclusively on issues of dying, death, and loss. Groups and individuals involved in the death awareness movement host teleconferences, symposia, conferences, training sessions, and workshops; they also publish a plethora of literature annually that is aimed at audiences ranging from children to adults and that ranges in subject matter and style from inspirational to self-help to serious clinical and scholarly work. The individuals and groups involved in this amorphous and far-reaching network—in reality a social movement—share a common focus (although not necessarily common goals, models, or methods); that focus is dying, death, and bereavement.
As a social movement, the death awareness movement had considerable success in the last half of the 20th century. From a small gathering of scholars at a 1956 professional meeting, thousands of college-level courses on the topics of death and dying are now offered. In the early 1970s, one hospice opened in Branford, Connecticut, outside of New Haven. Now more than 3,000 hospices serve almost every community in the United States. In this chapter, I explore and recount the history and trace the development of the death awareness movement. I also consider a more significant issue: Why in the past half century has there been such interest in dying, death, and bereavement?
Brief History of the Academic Study of Death
The death awareness movement has amorphous and numerous roots, but it is perhaps best to begin here with a review of the emergence of death as a field of academic study. Much of the work done in this field has been a theoretical basis for, an inspiration to, and a reflection of the movement’s organizational efforts.
Although some very early literature, including religious, philosophical, and social science writings, considers the problem of death, death studies as an area of academic interest advanced considerably with the publication of Freud’s 1917 essay on mourning and melancholia. Freud’s scope in the essay is broad—his concern is to distinguish between melancholia, or depression, and normal expressions of grief. This work, in which Freud defines the central task of mourning as the individual’s relinquishment of emotional energy and the deceased, has long influenced conceptions of the mourning process. However, Freud’s concept of the central task of mourning as learning to detach emotionally has been challenged recently by work that affirms the many healthy ways in which bonds between survivors and the deceased can continue (see, e.g., Doka 1989; Attig 1987; Klass, Silverman, and Nickman 1996).
Throughout the period between Freud’s essay on mourning and the pioneering work of the mid-1950s, a number of scholars did some excellent exploratory work on death and dying (for a complete sociohistorical account, see Pine 1977). Two of these should be noted in particular. Lindemann (1944) conducted research on the survivors of Boston’s Cocoanut Grove nightclub fire of 1942, which claimed more than 490 lives, as well as other groups of mourners and published the first clinical findings on acute grief. His conclusions that grief is a normal reaction to loss and a clearly identifiable syndrome with cognitive, physical, behavioral, spiritual, and affective manifestations set the tone for subsequent research on grief. In 1955, the British anthropologist Geoffrey Gorer published an essay titled “The Pornography of Death” ( 1965). In that essay, Gorer became one of the first to suggest and analyze the reasons for modern society’s tendency to ignore or deny death.
Pine (1977) characterizes the next period, 1958-67, as a decade of development. During this time, a number of influential works were published in a variety of fields, including medicine, nursing, philosophy, sociology, psychology, pastoral care, social commentary, funeral service, and theology. This was significant in that it firmly established the multidisciplinary nature of death studies. In a chapter of this size and mandate, I cannot do complete justice to the wide range of research published during this decade, but I want to mention here a few authors whose works are especially worthy of note, either because of their continued significance or because of their great heuristic value.
Perhaps one of the most significant books of this era was Feifel’s edited volume The Meaning of Death, published in 1959. This book clearly established death studies as an academic discipline and offered scholars clear evidence of the wide range of issues encompassed by the study of death and dying. Whereas Feifel’s work was scholarly, another influential book of this era drew from the muckraking tradition. Mitford’s best-selling The American Way of Death (1963) was a scathing critique of both the funeral service business and contemporary funeral practice. It had far-reaching effects, spawning increased governmental scrutiny of the funeral service industry and generating research on the value of funeral rituals, the findings of which ironically tended to discount some of Mitford’s criticisms and conclusions. The American Way of Death also generated interest in memorial societies and led to the development of local associations that would offer or arrange for members to receive dignified funeral services at reasonable cost, sometimes in conjunction with specified funeral service firms. This movement represented an early attempt on the part of Americans to organize collectively around areas related to dying and death and to gain a sense of control over the process. Some of these societies and associations came to play a significant role in the subsequent development of the death awareness movement. For example, William Wendt, a Washington, D.C., clergyman, organized a burial society that later spawned a significant grief center and played a role in the development of professional associations concerned with death and dying.
Other work was also going on in this era. For example, Parsons (1963) published an article in which he challenged the oft-stated assumption that the United States is a death-denying culture, asserting that American patterns of death are actually active attempts at control. Saunders (1959) and Parkes (1959) began to do their work that would later underpin the work of St. Christopher’s Hospice. In fact, in this period two important things occurred: First, many of the principal models that would influence subsequent academic work were developed (see, e.g., Glaser and Strauss 1965, 1968); and second, many scholars whose work or teaching would become influential in the field, such as Fulton (1961; Faunce and Fulton 1958), began their work.
Pine (1977) describes the decade spanning the late 1960s and early 1970s as a period of popularity for death studies. This is most evident in the work of Elisabeth Kübler-Ross. In her book On Death and Dying (1969), Kübler-Ross theorized five stages of dying, a theory that, although criticized by many subsequent scholars and unverified by research (see Corr 1993), became an overwhelmingly popular paradigm for understanding reactions to both dying and loss in general. Kübler-Ross’s popularity at the time was a result of many factors. She was a charismatic advocate with a folksy charm, and, as Klass and Hutch (1985-86) note, her message was one that rejected dehumanizing technology, embraced a normal death, and saw opportunities for growth even at the end of life—all of which resonated well with American culture in the 1960s.
Kübler-Ross’s work had far-reaching effects. First, and most critical, it brought the study of death out beyond the boundaries of academia and into the realm of health care workers and the lay public. Second, by doing so, it created a context for many of the organizational efforts that would emerge or move ahead in this era, such as the proliferation of hospices. Third, it generated a great deal of academic interest, stimulating research and bringing the subjects of death and dying to the attention of many in the academic community. Moreover, it created a larger context for the works of others, such as Earl Grollman (1967), who, through their writings and presentations, continued to educate professionals and the public about death and dying. In summary, the 1960s provided a firm foundation for death studies to emerge as an established academic discipline with its own models, controversies, journals, and organizations.
Complementary Efforts in the Field
As the scholarly study of death proceeded in the last half of the 20th century, it generated and was supported by a number of other efforts. In this period, journals and organizations devoted to death studies began, as did academic courses. In addition, a range of griefand disease-related self-help organizations and networks proliferated. The growth of hospice was also a significant development in this era (I discuss hospice in greater depth below).
Journals and Associations
Among the predictable events that accompany the establishment of any academic field are the development of journals and the founding of professional associations. In 1967, Austin Kutscher, himself a widower seeking information on death and dying, developed the Foundation of Thanatology. The foundation convened a series of multidisciplinary symposia, some of which continue to the present. It also began publishing one of the first journals in the field, theJournal of Thanatology, in 1971. Although the journal did not survive, it demonstrated the need for a specialized journal focused on dying and death.
Omega: Journal of Death and Dying, has survived. First organized as a mimeographed newsletter, by 1970 it was formalized into a journal coedited by Richard Kalish and Robert Kastenbaum. In 1977, Hannelore Wass developed a second journal, Death Education; in its original form, it focused on death education, but the focus was soon broadened and the journal’s name changed to Death Studies. Recently, the British journal Mortality and the new American journalLoss, Grief and Care (which has its roots in the Foundation of Thanatology) have emerged. It is interesting to note that none of these journals has yet developed a distinct point of view or a distinguishing theoretical perspective. In fact, all of these publications tend to share authors, similar topics, and even overlapping editorial boards. Both Omega and Death Studies are considered official journals of the Association for Death Education and Counseling. Naturally, given the multidisciplinary nature of the field, articles on death and dying are also published in academic journals associated with a wide range of other disciplines.
Professional associations in the field of death and dying began with Ars Moriendi (literally, “art of dying”), a loose network of scholars brought together by John Fryer, a psychiatrist at Temple University. Although the early history of this group and the reasons for its demise are subject to varying interpretations, one likely factor was its members’ failure to agree on a vision of what the organization was to be. Some favored a group composed of leaders in the field who would come together to discuss common concerns and assist in setting standards for care of the dying and the bereaved. Others favored a broad-based professional association. Both visions were soon realized by other organizations. The Forum for Death Education, begun in 1976 and now called the Association for Death Education and Counseling, became that broad-based professional association, whereas the International Work Group on Dying, Death and Bereavement emerged as a similar but more selective group, inviting prospective members to apply for membership. Again, reflecting the nature and history of the field, these two groups have many members and leaders in common. In addition, scholars in other fields have also formed interest groups concerned with death and dying within their own professional organizations, such as the Gerontological Society of America and the American Psychological Association.
Death Education Courses
In the late 1960s, courses on death education began to be offered on college campuses. As Pine (1977) notes, the early chronology of these courses is not easy to establish, because the courses were offered by a variety of academic departments. By 1971, Green and Irish found that more than 600 courses related to death and dying were offered by colleges and universities across the United States. Five years later, Cummins (1978) found more than 1,000 such courses in the United States enrolling more than 30,000 students. In addition, thanatology content is found in the curricula of both secondary and primary schools, integrated into modules in a variety of subjects, including health science and literature. In some secondary schools, courses directly concerned with the topics of death and dying are offered as electives.
Death education continues to consolidate. In addition to courses, many colleges and universities are now developing majors, certificates, and even master’s degree programs in grief counseling. The Association for Death Education and Counseling is now poised to establish a process for certifying death educators and grief counselors. Already, some members of the association who represent colleges and universities that have formalized programs have begun to discuss accreditation. These programs have been supplemented by academic centers such as the Center for Death Education and Research at the University of Wisconsin-La Crosse.
Although this growth is impressive, recent events continue to suggest the tenuous existence of death-related courses in the curricula of universities and colleges. Many of these courses, as well as death education programs and centers, are still tied to individuals rather than to departments or colleges. When a given professor retires, courses or even an entire program may be retired as well. Two examples illustrate this state of affairs. First, the Center for Death Education and Research was able to survive the retirement of its director, Robert Fulton, but it was transferred from it original home at the University of Minnesota to the home institution of Fulton’s chosen successor, Robert Bendiksen at the University of Wisconsin-La Crosse. Second, although many younger leaders in the field of thanatology and palliative care received significant training through a thanatology option in New York University’s doctoral program in counseling, it is questionable whether the option will survive the full retirement of its founding professor, Dr. Richard Ellis.
Along with the growth of thanatology as a subject of academic study, there has been parallel growth in self-help movements associated with death and dying. Since the early development of Widow-to-Widow groups (see, e.g., Silverman 1986), some groups (such as Compassionate Friends, a group for bereaved parents and siblings) have focused primarily on bereavement support, whereas others (such as Mothers Against Drunk Driving and Parents of Murdered Children) have included bereavement support along with other functions, such as legal advocacy. Recent research has found that such support can be helpful to both those giving assistance and those receiving it (Lund 1999).
The Development of Hospice
The major organizational effort that has taken place in the death awareness movement is the development of hospice. The remarkable history of the hospice movement has been well described by several authors (see, e.g., Stoddard 1978). Hospice represents, perhaps, one of the most successful grassroots movements in the last quarter of the 20th century. Although this movement has its roots in religious orders such as the Knights Hospitallers and the Sisters of Charity, both of which focused on caring for the dying, Dame Cicely Saunders is generally credited with opening the first modern hospice, St. Christopher’s, outside of London in 1967. At St. Christopher’s, she tried to create a homelike atmosphere and a holistic, family-centered way to allow dying persons to live life as fully as possible, free from debilitating pain and incapacitating symptoms.
St. Christopher’s Hospice became an exemplar in both research and practice, generating seeds that would grow throughout the world. Many of the pioneers who would influence the development of hospice and palliative care visited or trained there. In the United States, the spread of the hospice movement resulted in the establishment of Hospice, Inc., in Branford, Connecticut, in 1974. Branford also had a small home-care unit, but it was Dr. William Lamers, founder of a hospice in Marin County, California, who first focused on home care as both the heart and future of hospice. Lamers believed that the best way to offer patients a homelike environment was to treat them in their actual homes. He offered a model of hospice that freed interested individuals from fund-raising for new facilities, and this home-care model quickly spread throughout the country, sponsored by a range of groups, from churches and interfaith groups to junior leagues. Hospice in the United States is thus very different from hospice in England, centering more on home care and heavily emphasizing psychosocial care and the use of volunteers (Connor 1998).
The success of the hospice movement in the United States has been impressive. In 1974, the National Hospice Organization (NHO) was formed, and by 1978, there were more than 1,200 hospices nationwide (Connor 1998). In 1982, hospices became eligible for Medicare reimbursement, and this proved a further spur to growth. Current estimates place the number of hospice programs in the United States at more than 3,000, serving 700,000 persons annually (Miller et al. 2002).
As Saunders and Kastenbaum (1997) note, the growth of hospice was a reaction to a number of trends. First, advances in technology-driven medicine focused on cure seemed to be abandoning those who were no longer responsive to treatment. Second, hospice resonated with two other themes of the era—anticonsumerism and return to nature. Both trends converged on the idea that individuals could create alternative, more natural organizations, that they could take control of their lives—and their deaths. The study of death, especially the popularity of books such as Kübler-Ross’s On Death and Dying (1969), increased awareness of the unmet needs of the dying and bereaved.
Not everyone learned the same lesson at St. Christopher’s Hospice. Dr. Balfour Mount, a Canadian physician, was impressed by the hospice, but was also convinced that the lessons of St. Christopher’s need not necessarily lead to a new form of care; rather, those lessons could be applied even in the high-technology environment of the modern hospital. In his position at the Royal Victoria Hospital in Montreal, he pioneered the development of a hospital-based palliative care model. This model was successful, and in February 2000, the NHO changed its name to the National Hospice and Palliative Care Organization to reflect these two different approaches to providing the dying with humane care.
Current Reality and Reactions
By the late 1990s, the death awareness movement had become relatively institutionalized. This is evident in a number of changes. For example, it has become routine for many funeral homes to offer after-care services ranging from information and referral to educational seminars to the sponsorship of counselors and therapy groups. Large-scale educational events concerning death-related topics are not uncommon, and television programs and films focused on death and dying (such as Tuesdays With Morrie and Bill Moyers’s On Our Own Terms) have received widespread critical acclaim and respectable audiences. Each year, the Hospice Foundation of America produces a major teleconference titled “Living With Grief,” hosted by TV journalist Cokie Roberts; this conference reaches more than 2,000 sites throughout North America and offers education to close to a quarter of a million professionals. It is now routine for government agencies to send crisis teams and grief counselors to sites of sudden and traumatic death and loss. In fact, President Clinton devoted part of his response to the shootings of 13 students and teachers at Columbine High School in 1999 to reassuring the nation that he had dispatched grief counselors to the site.
Changes in our attitudes are also reflected in the mass media, where dying and death are no longer taboo topics. News programs such as 60 Minutes and Dateline frequently feature stories related to death and dying. In the aftermath of events such as the death of John F. Kennedy, Jr., or the September 11, 2001, terrorist attacks, it is not unusual to see, in both print and nonprint media, grief and trauma experts discussing common reactions to such events and offering advice. Topics surrounding death have even become part of our entertainment. One of the HBO cable television network’s highest-rated series is the critically acclaimed Six Feet Under, which follows the lives of the members of a family who live and work in a funeral home. This program frequently shows expressions of grief, funerals, and corpses.
Naturally, such changes have generated various reactions. For example, in the aftermath of the shootings at Columbine, the popular press published a few critical pieces that challenged the value of grief counseling. There has also been a small reactive movement against death education in schools spearheaded by Phyllis Schlafly, perhaps best known for her activism against the Equal Rights Amendment in the 1970s. In 1982, Ron Rosenbaum led a scathing attack on the death awareness movement in an article published in Harper’s. According to Rosenbaum, the death awareness movement, led by Kübler-Ross, seeks to create a cult of the dead, romanticizing the process of dying and encouraging suicide. Rosenbaum’s piece mixed serious cultural criticism with personal attacks on Kübler-Ross, who, at the time Rosenbaum wrote his article, had begun to explore spiritualism. What Rosenbaum neglected to realize or to state was how distant the death awareness movement, at least within academia, had become from this former icon. Rosenbaum echoed Lofland’s (1978) earlier academic critique, in which she accused what she called the “Happy Death Movement” of offering a positivist view of death that romanticizes dying and overemphasizes emotional expressiveness as therapy for the dying and bereaved. It might be stated that although many of these reactions do speak to some of the strains of popular thanatology, they are based on vast oversimplification of the many approaches and rich theoretical debate evident within the death awareness movement. In any case, the movement’s place in academia, health care, self-help, and popular culture seems secure.
Factors Underlying the Development of the Death Awareness Movement
Beyond simply reviewing the chronology of the death awareness movement, it is interesting to speculate on some of the factors that have influenced the easing of cultural taboos concerning death and the emergence of this movement. In earlier work, I have identified four sites or factors that have facilitated increased interest in and awareness of death in the United States (Doka 1983). The first factor involves demographic changes: As the proportion and population of the elderly have increased, interest in the field of aging has intensified, and with the study of aging has come increased awareness and study of dying and death. The prolongation of the dying process has created new strains for medical staff, new ethical issues, and new forms of care, all of which have served to increase public awareness of and interest in the discussion and organization of dying and death.
The second factor is historical. Many researchers have noted that the beginning of the nuclear age created totally new issues that complicated death and increased death anxiety. In the latter half of the 20th century and the beginning of the 21st, other issues have been raised. We have become aware of dangers to the environment. We are aware of the ever-present threat of worldwide terrorism. We have seen the emergence of a new disease—AIDS—that has devastated communities in the Western world even as it decimates Africa and threatens other developing areas. Faced as we are with the possibilities of the nuclear death of civilization, new diseases, environmental holocaust, and random terrorism, death has become a critical social concern. Support for this perspective can be found in the case of the late Middle Ages, when the widespread devastation caused by bubonic plague was reflected in a preoccupation with death, as evidenced by art, religion, and popular thought (Boase 1972; Tuchman 1978; Aries 1981).
The third factor associated with the apparent rise in death awareness is sociological and social psychological in nature. In its beginnings, the death awareness movement was aligned in goals with many of the social movements and trends of the 1960s. It asserted the rights and dignity of the dying. It proclaimed the naturalness of death. It denounced dehumanizing technology. It emphasized openness toward death and sharing with the dying. In short, its increasing popularity was aided by its identification with many social themes evident at that time.
The fourth factor is cultural. The death awareness movement has filled a void in a secular society where many segments of the population previously found no significance in the culture’s understandings of death, making the topics of death and dying more acceptable and thus more meaningful. In our materialistic society, death has often been avoided or denied. The death awareness movement has been part of a broad trend toward the inclusion of spirituality and meaning making in individuals’ lives. It is probably no coincidence that the movement emerged at a time when many members of the Baby Boom generation began to contemplate their parents’ mortality as well as their own.
I do not mean to suggest that the death awareness movement is merely a fad or a relic of the 1960s. Although a number of factors combined in that era to cause the movement to emerge and grow, it has demonstrated respectability and durability. It has become institutionalized. This should continue as the Baby Boomers age, given that, historically, the members of this generation have actively confronted the issues they face and compelled the larger society to face them as well.
I do not mean to suggest, either, that the entities that make up the death awareness movement will remain always in their present forms. It will be interesting to see, for example, the ways in which the growth of palliative care as well as other changes in U.S. health care will affect the future of hospice. In addition, as Lofland (1978) notes, the tendency of many practitioners to emphasize emotional expressiveness as the heart of self-help groups and counseling has been challenged by critics both within and outside the field. In fact, there is a clear need for the careful evaluation of practice. There is a danger that untested and unevaluated approaches that lack theoretical depth, demonstrated by persons of dubious training, can do the movement great harm. Yet, even here, there are promising trends. As a field develops, consolidation of knowledge and moves towards certification usually emerge (Doka & Smith-Fraser 1986). As this book goes to press, the Association for Death Education and Counseling is on the verge of developing a certification process that will codify a body of knowledge and a uniform standard of practice.
It is possible to predict that in the next few decades there will be intensified interest in death and dying and an increase in the growth of the death awareness movement. Part of this growth will come simply from momentum. The establishment of large self-help networks, hospices, professional associations, and other organizational efforts, as well as the development of certification and educational programs, suggests continued focus. In short, interest breeds more interest. Part of the growth in the movement, however, will be related to demographics. Members of the Baby Boom generation are now at the verge of moving into later life. As the Baby Boomers age, they will undoubtedly continue their characteristic way of confronting the issues they face and compelling the larger society to do so; this suggests that death will continue to be a topic of interest well into the 21st century.