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A PERSPECTIVE ON THE CURRENT STATE

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???????????????????????????????????????????????????? A PERSPECTIVE ON THE CURRENT STATE OF DEATH EDUCATION ???????????????????????????????????????????????????? HANNELORE WASS Gainesville, Florida, USA The author offers some views on the current state ofdeath education with focus on the sparing attention given the death education of health professionals and of grief counselors. There is need for improved integration ofthe knowledge accumulated in the study of death, dying, and bereavement into the basic curricula of the parent disciplines and professional schools. Facilitation of personal engagement with the issue of mortality is an important component of the educative process.Various assessment problems are outlined and some suggestions for improvements are offered.The death education needs of various groups, including school age children and olderadults, are noted.The article contains alist of references, many not cited in the text, recommended for an extensive review of developments in death education. It is satisfying to see this special issue of Death Studies devoted to honoring and remembering Herman Feifel, philosopher, psychologist, research scientist, professor, and the pivotal force in the death awareness movement and the development of the study of death. His achievement as prime mover and contributor to thanatology has been recognized by his colleagues through numerous honors and awards. The latest in his life was the‘‘Gold Medal Award for Life Achievement in the Application of Psychology.’’1 In paying tribute to Herman Feifel in a discussion of death education, it is fitting to note that he was the first modern death educator. The Received 25 August 2003; accepted 23 October 2003. Address correspondence to Hannelore Wass, 601X N.W. 54th Way, Gainesville, FL 32653. E-mail: wass@nersp.nerde.ufl.edu 1 By the American Psychological Foundation, 2001. 289 Death Studies, 28: 2897308, 2004 Copyright #Taylor & Francis Inc. ISSN: 0748-1187 print / 1091-7683 online DOI: 10.1080/07481180490432315

A. Wass scientific symposium on"Death and Behavior" he organized and pre sented to the 1956 Annual Meeting of the American Psychological Asso- ciation, was a powerful and consequential educational act. The fact that it took more than two years to locate a publisher for the Proceedings speaks not only to the prevailing silence on the subject of death in the 1950s. but also to Feifel's strength of conviction and determination to break the taboo. He agreed that the "death awareness movement "can be considered a synonym for"death education" in the broadest sense Beginning with the 1960s, considerable efforts have been expended to develop and refine death education programs. Attention has been paid to important aspects of death education. They include(a)articulation of goals,(b)consideration of content and perspectives, (c)teaching methods,(d)teacher competencies, and(e)evaluation. Compared to the pioneering days of thanatology, we have seen advances in death edu cation offered to a variety of stakeholders including college students, the general public, primary-and secondary-level students, health pro fessionals, and grief counselors. In a wide range of programs, such as full semester courses, teaching units for public school students, and short workshops for professionals, it is apparent that attention has been paid to planning, goal setting, execution, and evaluation. Herman Feifel's influence, as his emphasis on the multidisciplinary nature of death studies and his insistence that death education benefits all (including children),(Feifel, 1977) is apparent. Most particularly, the humanistic perspective-the philosophical foundation of the study of death he articulated--is reflected in the goals of death education, which stress both acquisition of knowledge and development of self- understanding and clarification of values, meanings, and attitudes toward death. The range of experiential activities designed to assist with such personal engagement illustrates the commitment to this goal. It is a tribute to his leadership that despite institutional pressures, the over- whelming amount of death literature available, and the temptation to intellectualize death, this humanistic goal is still pursued (e.g, Attig, 1992; Gould, 1994; Papadatou, 1997) Because of space limitations in this special issue, I have chosen to examine the current state of death education for health professionals he basis for his 1959 path breaking book, The Leaning of Death. Personal communication at the Conference on Death and Dying: Education, Counseling and Care. December 1-3. 1976. Orlando Florida

scientific symposium on ‘‘Death and Behavior’’ he organized and presented to the 1956 Annual Meeting of the American Psychological Association, was a powerful and consequential educational act.The fact that it took more than two years to locate a publisher for the Proceedings2 speaks not only to the prevailing silence on the subject of death in the 1950s, but also to Feifel’s strength of conviction and determination to break the taboo. He agreed that the ‘‘death awareness movement’’ can be considered a synonym for ‘‘death education’’ in the broadest sense.3 Beginning with the 1960s, considerable efforts have been expended to develop and refine death education programs. Attention has been paid to important aspects of death education. They include (a) articulation of goals, (b) consideration of content and perspectives, (c) teaching methods, (d) teacher competencies, and (e) evaluation. Compared to the pioneering days of thanatology, we have seen advances in death education offered to a variety of stakeholders including college students, the general public, primary- and secondary-level students, health professionals, and grief counselors. In a wide range of programs, such as full semester courses, teaching units for public school students, and short workshops for professionals, it is apparent that attention has been paid to planning, goal setting, execution, and evaluation. Herman Feifel’s influence, as his emphasis on the multidisciplinary nature of death studies and his insistence that death education benefits all (including children), (Feifel, 1977) is apparent. Most particularly, the humanistic perspectivethe philosophical foundation of the study of death he articulatedis reflected in the goals of death education, which stress both acquisition of knowledge and development of selfunderstanding and clarification of values, meanings, and attitudes toward death.The range of experiential activities designed to assist with such personal engagement illustrates the commitment to this goal. It is a tribute to his leadership that despite institutional pressures, the overwhelming amount of death literature available, and the temptation to intellectualize death, this humanistic goal is still pursued (e.g., Attig, 1992; Gould, 1994; Papadatou, 1997). Because of space limitations in this special issue, I have chosen to examine the current state of death education for health professionals 2 The basis for his 1959 path breaking book,The Meaning of Death. 3 Personal communication at the Conference on Death and Dying: Education, Counseling, and Care, December 173, 1976, Orlando, Florida. 290 H. Wass

Perspective on Death Education and for grief counselors. I present some overall conclusions about the place and state of death education today, based in par rt on a review of aspects of death education not included in this article. However I have listed references not cited in this text that i recommend for an extensive review of death education. The conclusions I offer come from the van- tage point of a person who has lived as these developments occurred and who has, for better or worse, contributed in some part to this history There have been considerable advances in knowledge pertinent to care the end of life, contributing to the understanding of dying persons nd their loved ones. Application of this understanding in education has mproved the quality of care provided in a variety of health care settings, hospices in particular, but also including hospitals and homes. Promising developments are underway in education and program development focusing on care in neglected clinical settings(e.g, intensive care units nd for neglected populations (e.g, African Americans in urban and rural communities, and residents in prisons). They are important steps toward achieving equity in the care of dying persons The development and increasing use of counseling and ce services to organizations and agencies involved in emergency to terror attacks, plane crashes, multiple murders, and natural cata strophes is a substantial achievement in the area of grief counseling Likewise, crisis intervention programs in the public schools have been offered for public school students, including attempts to introduce long term suicide prevention(e.g, Leenaars Wenckstern, 1991; Stevenson, 1994) Nonetheless, death education for health professionals and death edu cation for grief counselors are of considerable concern. It is important however, to keep in mind Feifel's(1982)observation that we are embedded in our time and culture.. each generation contends with the presence of death--raging against it, embracing it, attempting to domesticate it. and. at the same time. his further observation that although we are more knowledgeable and realistic about death. there is a persisting avoidance. There are numerous indications of avoidance and ambivalence in our current death system as well. Breath-taking advances in medical and biological sciences, such as genetics, genomics, on"Death in Contemporary America"to the American sychological Association in 1981 and presented the proceedings in a special issue of Death Educa tion which he guest-edited in 1982, 6(2)

and for grief counselors. I present some overall conclusions about the place and state of death education today, based in part, on a review of aspects of death education not included in this article. However I have listed references not cited in this text that I recommend for an extensive review of death education. The conclusions I offer come from the vantage point of a person who has lived as these developments occurred and who has, for better or worse, contributed in some part to this history. There have been considerable advances in knowledge pertinent to care at the end of life, contributing to the understanding of dying persons and their loved ones. Application of this understanding in education has improved the quality of care provided in a variety of health care settings, hospices in particular, but also including hospitals and homes. Promising developments are underway in education and program development focusing on care in neglected clinical settings (e.g., intensive care units) and for neglected populations (e.g., African Americans in urban and rural communities, and residents in prisons). They are important steps toward achieving equity in the care of dying persons. The development and increasing use of counseling and consulting services to organizations and agencies involved in emergency response to terror attacks, plane crashes, multiple murders, and natural catastrophes is a substantial achievement in the area of grief counseling. Likewise, crisis intervention programs in the public schools have been offered for public school students, including attempts to introduce longterm suicide prevention (e.g., Leenaars & Wenckstern, 1991; Stevenson, 1994). Nonetheless, death education for health professionals and death education for grief counselors are of considerable concern. It is important, however, to keep in mind Feifel’s (1982)4 observation that ‘‘we are embedded in our time and culture ... each generation contends with the presence of deathraging against it, embracing it, attempting to domesticate it’’, and, at the same time, his further observation that although we are more knowledgeable and realistic about death, there is a persisting avoidance. There are numerous indications of avoidance and ambivalence in our current death system as well. Breath-taking advances in medical and biological sciences, such as genetics, genomics, 4 Feifel organized a symposium on ‘‘Death in Contemporary America’’ to the American Psychological Association in 1981 and presented the proceedings in a special issue of Death Education which he guest-edited in 1982, 6(2). Perspective on Death Education 291

A. Wass proteonics, and in new technologies, such as nanotechnology and regen eration technology, raise expectations for further extending human lives and unrealistic hopes for physical immortality bolstered by a flourishing anti-aging industry. Thus, criticism of death education efforts must be mpered by consideration of the larger cultural context in which these efforts are made Death education for health Professionals Pioneers in the study of dying patients and their care during the 1960s called for reform and spent their careers working toward achieving it Leading educators in the health professions have been mindful of the humanistic component in death education, attempting to balance train- ing for practical skills with attention to personal understanding and attitudes(e. g, Bertman, 1991; Papadatou, 1997; Quint Benoliel, 1967, 1982). During the early years great advances were made in the study of pain control and symptom management for the terminally ill,even- ually leading to legislation in the United States that entitles patients to compassionate pain relief" including controlled substances. One might expect that those responsible for preparing health professionals would have been eager to revise their curricula based on the data accumulating since the 1960s. However, it was primarily nursing schools that devel oped courses in death education. The most visible effect of the new teach ng was the development of hospice programs as an alternate to traditional“care” Care for the Dying in Hospice and Hospitals In professional education, the ultimate test of quality education lies in the effectiveness of care or counseling. Even though successful, hos workers have been criticized for the paucity of empirical evidence(by traditional standards of scientific inquiry) documenting efficacy. This evidence of hospice success has come largely from qualitative studies, clinical reports, and a wealth of personal narratives and testimonials by patients and their families. Despite nearly 30 years of hospice care in the United States, the mainstream medical community failed to gener- ally adopt its principles and practices for caregiving in hospital Because one of the major findings in early studies(Quint, 1967)showed

proteonics, and in new technologies, such as nanotechnology and regeneration technology, raise expectations for further extending human lives and unrealistic hopes for physical immortality bolstered by a flourishing anti-aging industry. Thus, criticism of death education efforts must be tempered by consideration of the larger cultural context in which these efforts are made. Death Education for Health Professionals Pioneers in the study of dying patients and their care during the 1960s called for reform and spent their careers working toward achieving it. Leading educators in the health professions have been mindful of the humanistic component in death education, attempting to balance training for practical skills with attention to personal understanding and attitudes (e.g., Bertman, 1991; Papadatou, 1997; Quint Benoliel, 1967, 1982). During the early years great advances were made in the study of pain control and symptom management for the terminally ill, eventually leading to legislation in the United States that entitles patients to ‘‘compassionate pain relief’’ including controlled substances. One might expect that those responsible for preparing health professionals would have been eager to revise their curricula based on the data accumulating since the 1960s. However, it was primarily nursing schools that developed courses in death education.The most visible effect of the new teaching was the development of hospice programs as an alternate to traditional‘‘care.’’ Care for the Dying in Hospice and Hospitals In professional education, the ultimate test of quality education lies in the effectiveness of care or counseling. Even though successful, hospice workers have been criticized for the paucity of empirical evidence (by traditional standards of scientific inquiry) documenting efficacy. This evidence of hospice success has come largely from qualitative studies, clinical reports, and a wealth of personal narratives and testimonials by patients and their families. Despite nearly 30 years of hospice care in the United States, the mainstream medical community failed to generally adopt its principles and practices for caregiving in hospitals. Because one of the major findings in early studies (Quint, 1967) showed 292 H. Wass

Perspective on Death Education the lack of communication between physicians and patients with subse quent adverse effects on patients, it is important to determine what changes have occurred since then Klenow and Young(1987) reviewed the literature on physicians'com- munication with terminally ill cancer patients from the 1960s to the 1980s. They reported a dramatic shift from withholding diagnosis and prognosis to telling patients the truth. However, they also pointed to shortcomings in this literature(e.g, sample selection, response rates that undermine these findings. With the establishment of advance direc tives, the communication issue has become more complex. Findings from the most extensive study of dying in hospitals (involving over 9,000 patients in five major medical centers) indicate that most physi- cians do not know about patients'end-of life wishes, and of those who know, only 15% talk with patients (SUPPORT/ Investigators, 1995) Similarly, a key concern of hospice pioneers was to achieve optimal pain/symptom control in order to allow patients to live their last days nd to die with dignity. Many more pain centers have been established in the United States and abroad since the early days of hospice care, enabling sophisticated pharmaceutical and other means to control pair Yet in the study cited above nearly half of the dying patients in hospitals endured moderate to severe pain, and nearly half spent their last 10 days in intensive care units Medical and nursing education Not surprisingly, there has been inadequate attention to death and dying in medical curricula at all levels. Dickinson is a long-time observer of death education in medical, nursing, and other health-related profes sional schools. In a 1975 survey of U.S. medical schools he found that only half of them offered something more than"a lecture or two"on the subject of death. Moreover, most course offerings listed were electives, d fewer than 10%o offered a full course(Dickinson, 1976). More recent surveys indicated improvement. By the 1990s nearly all medical, nur sing, pharmaceutical, and social work schools offered some education about death and dying, most of it integrated into the basic curricula. In most schools, that consisted of only a few lectures. Full course offerings were improved over the past but still inadequate(13% in schools of med- icine, 15% in nursing). Full-course electives were taken by a fourth of the students. When queried about future plans, half of the medical and

the lack of communication between physicians and patients with subsequent adverse effects on patients, it is important to determine what changes have occurred since then. Klenow andYoung (1987) reviewed the literature on physicians’ communication with terminally ill cancer patients from the 1960s to the 1980s. They reported a dramatic shift from withholding diagnosis and prognosis to telling patients the truth. However, they also pointed to shortcomings in this literature (e.g., sample selection, response rates) that undermine these findings.With the establishment of advance directives, the communication issue has become more complex. Findings from the most extensive study of dying in hospitals (involving over 9,000 patients in five major medical centers) indicate that most physicians do not know about patients’ end-of life wishes, and of those who know, only 15% talk with patients (SUPPORT/Investigators, 1995). Similarly, a key concern of hospice pioneers was to achieve optimal pain/symptom control in order to allow patients to live their last days and to die with dignity. Many more pain centers have been established in the United States and abroad since the early days of hospice care, enabling sophisticated pharmaceutical and other means to control pain. Yet in the study cited above nearly half of the dying patients in hospitals endured moderate to severe pain, and nearly half spent their last 10 days in intensive care units. Medical and Nursing Education Not surprisingly, there has been inadequate attention to death and dying in medical curricula at all levels. Dickinson is a long-time observer of death education in medical, nursing, and other health-related professional schools. In a 1975 survey of U.S. medical schools he found that only half of them offered something more than ‘‘a lecture or two’’on the subject of death. Moreover, most course offerings listed were electives, and fewer than 10% offered a full course (Dickinson, 1976). More recent surveys indicated improvement. By the 1990s nearly all medical, nursing, pharmaceutical, and social work schools offered some education about death and dying, most of it integrated into the basic curricula. In most schools, that consisted of only a few lectures. Full course offerings were improved over the past but still inadequate (13% in schools of medicine, 15% in nursing). Full-course electives were taken by a fourth of the students.When queried about future plans, half of the medical and Perspective on Death Education 293

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