Death Education

The term death education refers to a variety of educational activities and experiences related to death and embraces such core topics as meanings and attitudes toward death, processes of dying and bereavement, and care for people affected by death. Death education, also called education about death, dying, and bereavement, is based on the belief that death-denying, death-defying, and death-avoiding attitudes and practices in American culture can be transformed, and assumes that individuals and institutions will be better able to deal with death-related practices as a result of educational efforts.

There are two major reasons for providing death education. First, death education is critical for preparing professionals to advance the field and accomplish its purposes. Second, it provides the general public with basic knowledge and wisdom developed in the field. The overarching aims of death education are to promote the quality of life and living for oneself and others, and to assist in creating and maintaining the conditions to bring this about. This is accomplished through new or expanded knowledge and changes in attitudes and behavior.

Death education varies in specific goals, formats, duration, intensity, and characteristics of participants. It can be formal or informal. Formal death education can involve highly structured academic programs of study and clinical experience. It can be organized into courses, modules, or units taught independently or incorporated into larger curricular entities. It can be offered at the elementary, middle, and high school levels, in postsecondary education, as professional preparation, and as short-term seminars or workshops for continuing professional and public education. Informal death education occurs when occasions arising in the home, at school, and in other social settings are recognized and used as "teachable moments." In the home, the birth of a sibling or the death of a pet may naturally lead to interactions that answer a child's questions about death. At school, a student's sudden death may trigger educational follow-up, in addition to crisis counseling.

Two distinct methodological approaches to structured death education are the didactic and the experiential. The didactic approach (involving, for example, lectures and audiovisual presentations) is meant to improve knowledge. The experiential approach is used to actively involve participants by evoking feelings and thereby permitting death-related attitudes to be modified. This approach includes personal sharing of experiences in group discussion, role-playing, and a variety of other simulation exercises, and requires an atmosphere of mutual trust. Most educators use a combination of the two approaches.

Death education can be traced back to the death awareness movement, which unofficially began with Herman Feifel's book, The Meaning ofDeath (1959). He and other scholars noted that the subject of death had become "taboo" in the twentieth century and challenged individuals to acknowledge their personal mortality, suggesting that to do so is essential for a meaningful life. Feifel pioneered the scientific study of attitudes toward death and pointed to the multidisciplinary nature of the field. At about the same time other pioneers focused on more specific issues concerning dying persons and their care and the experience of grief.

General Academic Education

Reflecting the broad-based academic beginnings, courses on death and dying were developed by Robert Kastenbaum, Clark University, Robert Fulton at the University of Minnesota, Dan Leviton at the University of Maryland, and James Carse at Yale University, among others. In 1969 Fulton established the Center for Death Education (now the Center for Death Education and Bioethics at the University of Wisconsin, La Crosse). In 1970 Robert Kastenbaum founded Omega: The Journal of Death and Dying, the first professional journal in the field. In the same year the first conference on death education was held at Hamline University in St. Paul, Minnesota. In 1977 Hannelore Wass founded the journal Death Education (later renamed Death Studies ).

College Courses

As the field developed, a course or two on death became popular offerings in many colleges and universities across the country (in such areas as psychology, sociology, health sciences, philosophy, and education). These courses varied somewhat in perspective, depending on the disciplines in which they were offered. Courses in sociology focused more on cultural and social influences and customs, whereas courses in psychology emphasized the experiences and dynamics of dying, bereavement, and attitudes toward death. Leaders in the field recommended an approach that embraced both foci. From suggestions for course content, a common core of topics emerged, including historical, cultural, and social orientations and practices; attitudinal correlates of death and dying; coping with bereavement; controversial issues; and personal confrontation with death.

Through the years, college courses increasingly have come to reflect the multidisciplinary nature of the field. As more knowledge was generated, college level courses with a multidisciplinary focus have tended to function as introductory or survey courses. Although popular introductory textbooks vary in approach and style, with the considerable similarity in the topics, a degree of standardization, at least in course content, has been achieved. At least one course on death is offered at most colleges across the country.

Along with an accelerating rate of publications in professional journals, books were published on various aspects of death, for professionals and the general public, including juvenile literature. Additionally, a wealth of audiovisuals was developed. Audiovisuals are used to facilitate group discussions and the sharing of personal experiences.

Academic Concentration and Certificate Programs

A number of special tracks/areas of concentration have been developed in academic units at colleges and universities, especially at the graduate level, where they may be part of the curricular offerings in psychiatric/mental health and other nursing programs, counseling, clinical or health psychology, human development and family studies, and other specializations. One of the earliest, at Brooklyn College, is a thirty-three-credit-hour master's degree in a health science program with a concentration on care of the dying and bereaved. Similar programs in operation for two decades are offered at the New Rochelle College of Graduate Studies, New York University, and Hood College in Frederick, Maryland, among others. A unique comprehensive program, developed at King's College and Western Ontario University in Canada, is an undergraduate "Certificate in Palliative Care and Thanatology," which involves a thirty-six-credit-hour interdisciplinary program with a focus on palliative care, bereavement, suicide, and ethical, religious, and cultural issues. Many colleges and universities allow for individualized programs of concentration in death-related studies.

Education for Health Professionals

In addition to the more general academic approach to the study of death, a number of pioneers concentrated on more specific issues. Several, including Jeanne Quint Benoliel, Cicely Saunders, and Elisabeth Kübler-Ross, focused on dying patients and the effects of institutional environments, the process of dying, and pain management, and they articulated the need for change in the care of dying people.

Benoliel began her pioneering work in death education for caregivers by designing a graduate course for nursing students, which she began to teach in 1971. Course topics included social, cultural, and psychological conditions that influence death-related attitudes and practices; concepts of grief; and ethical, legal, and professional issues concerning death. The course became a model for others. In her 1982 book, Death Education for the Health Professional, Benoliel comprehensively described several courses on death for undergraduate and graduate students in nursing and medicine.

Many colleges of nursing developed courses or modules in death education as electives and often as required courses, as well as continuing education programs, with content reflecting the broader framework that Benoliel recommended together with palliative and other caring skills required to work effectively with dying persons and their families. Several medical educators developed courses specifically for medical students. Despite these efforts, however, medical schools largely have failed to incorporate death-related knowledge and skills into their curricula.

Education was critical for the development of hospice care. Hospices relied largely on the leadership of professional organizations. A major concern of the International Work Group on Death, Dying, and Bereavement (IWG) has been to develop standards of clinical practice. IWG documents, identifying basic assumptions and principles of death-related programs and activities, are published in professional journals and periodically reprinted as collections by IWG. The "Assumptions and Principles Underlying Standards of Care of the Terminally Ill," developed by IWG members from the United States, the United Kingdom, and Canada, first published in 1979, became an important guide for hospice organizations.

The National Hospice and Palliative Care Organization, founded in 1981, grew out of the efforts of pioneers in hospice care. Among its main purposes has been the continuing education of its membership through annual conferences and the development of resources. Other professional organizations with similar priorities and information sharing are the Hospice Foundation of America, the International Association of Hospice and Palliative Care, and the American Academy of Hospice and Palliative Medicine (publisher of the Journal of Palliative Medicine ). Related journals for health professionals are Palliative Medicine (in the United Kingdom) and the Journal of Palliative Care (in Canada), among others.

Developments in Physician Education

A four-year study of seriously ill patients in hospitals, released in 1995, confirmed substantial shortcomings in palliative care and communication. Another study, conducted by George E. Dickinson and A. C. Mermann and released in 1996, found that except for a few occasional lectures or seminars at the clinical level, little instruction on death and dying occurred in medical schools. Not surprisingly, an examination of medical textbooks in multiple specialties by Michael W. Rabow and his colleagues in 2000 revealed that, with few exceptions, content in end-of-life care areas is minimal or absent.

With funding from various sources, however, comprehensive initiatives have been launched to educate physicians in end-of-life care. In 1996 the American Academy of Hospice and Palliative Medicine developed Unipacs, a program in hospice and palliative training for physicians that consists of six modules and is designed for physicians and physician educators. The program includes such topics as assessment and treatment of pain and other symptoms, alleviating psychological and spiritual pain, ethical and legal decision-making when caring for the terminally ill, and communication skills. A similar program, the National Internal Medicine Residency Curriculum Project in End-of-Life Care, is now a requirement for internal medicine residency training. In 1998 the American Medical Association announced the Education for Physicians on End-of-Life Care Project. Its first phase has been curriculum development including lecture sessions, videotape presentations, discussions, and exercises, organized into portable two-day conferences. Next, physician educators have been trained in using the curriculum. It will be published as a self-directed learning program and made available for physicians across the country. The American Academy of Family Physicians, in its "Recommended Curriculum Guidelines for Family Practice Residents on End-of-Life Care" (2001), adds to the knowledge and skill components a third on attitudes that include awareness and sensitivity to such issues as "breaking bad news"; psychosocial, spiritual, and cultural issues affecting patients and family; and physicians' personal attitudes toward death.

Nursing Education

Nurses spend far more time with critically ill patients and their families than do other caregivers. They have been better prepared for this aspect of their profession than physicians in that many nursing schools have been offering courses or modules at the undergraduate and graduate levels. Still, a 1999 study by Betty Ferrell suggested that end-of-life education in nursing schools is inconsistent. In response, the American Association of Colleges of Nursing (AACN) developed "Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care." Reflecting these guidelines, the AACN in 2001 developed the End of Life Nursing Education Curriculum (ELNEC). ELNEC is a comprehensive curriculum of nine modules to prepare bachelor's and associate degree nursing faculty who will integrate end-of-life care in basic nursing curricula for practicing nurses, and to provide continuing education in colleges and universities and specialty nursing organizations across the country. Among other efforts to improve nursing education in end-of-life care is the Tool-Kit for Nursing Excellence at End of Life Transition (TNEEL), a four-year project developed by six prominent nursing educators and researchers. TNEEL is an innovative package of electronic tools distributed to nurse educators in academic and clinical settings and eventually will be offered as a web-based self-study course.

Preparation of Grief Counselors

Scientific writing on grief began in 1917 with the renowned physician and psychiatrist Sigmund Freud's essay on mourning and melancholia, and continued with the first empirical study of acute grief reactions by Erich Lindemann in 1944, John Bowlby's studies on attachment and loss in 1960 and 1961, and Colin Murray Parkes's investigations of spousal bereavement in 1970. In the next thirty years the study of grief became the most active area of research in the field. Differences in conceptualizations and methodological approaches led to diverse findings. The diversity in results may explain, in part, why findings from this literature were not immediately incorporated into the academic curricula in psychology, sociology, or the health sciences, except as occasional seminars, and lectures, or as topics for independent study and research.

These findings did stimulate the development of various mutual and self-help organizations for bereaved adults. Later, when studies on childhood bereavement showed that children also grieve and can benefit from support, programs for bereaved children were established. The Dougy Center in Portland, Oregon, a community-based volunteer program founded in 1985, became a model and training center for professionals across the nation interested in setting up grief support programs for children. In addition, leaders in the field pioneered community-supported crisis intervention programs in the public schools in the 1990s.

Hospices have become increasingly involved in community-oriented educational outreach and clinical services for bereaved adults and children and the public. Colleges of mortuary sciences have begun offering courses or modules in after-care counseling. Some basic information on grief and bereavement has also been incorporated into training of personnel for disaster relief organizations, of airline companies, and in some police departments.

The professional preparation of grief counselors has relied heavily on training in more nontraditional settings. Mental health practitioners and other health professionals have been offered continuing education seminars, workshops, and institutes. Leaders suggest that while well-trained and experienced mental health practitioners can learn the basics of grief counseling in a two- or three-day intensive workshop, the issues in grief therapy are too complex to be addressed in such abbreviated fashion.

Professional organizations have been vital in educating their members about grief. The Association for Death Education and Counseling (ADEC), in particular, concerned itself early with the question of education for professionals and was the first organization to develop professional standards and certification programs for death educators and counselors. In addition to its annual conferences, ADEC for many years has been offering a sequence of preconference basic and advanced academic courses and experiential workshops taught by leading professionals, as well as resources to assist members in preparing for certification. ADEC is at present revising its certification programs to certify professionals as grief counselors.

At colleges and universities today, many departments of health psychology, counseling and clinical psychology, human development and family studies, and other academic units offer areas of concentration that include courses and independent studies in death and bereavement at the under-graduate level. At the graduate level, an increasing number of departments support theses and dissertations on the subject. Increasingly more sophisticated and up-to-date death and grief-related content appears in the textbooks in relevant specialties in psychology, sociology, and gerontology. As hospitals begin to include bereavement follow-up services in their end-of-life care programs, content about grief will become part of medical and nursing education.

In addition to Death Studies and Omega, several other professional journals deal with grief, including Illness, Crisis, and Loss and Journal of Loss and Trauma. A large number of books are in print on various aspects of grief, including scholarly treatments, personal accounts, and, most of all, practical guidelines for support. An exploding number of profit and nonprofit Internet web sites offer information, resources, and support as well.

Death Education for the Public

As the field of death and dying evolved and the subject became acceptable for discussion, the print and electronic media reported on new developments and presented interviews and panel discussions with increasing frequency. Public information about end-of-life issues that evolved with medical and technological advances was instrumental in the establishment of citizens' advocacy groups, the public debate regarding patients' rights, and subsequent legislation.

Funding from generous philanthropies, designed to educate professionals as well as the general public, has been instrumental in recent educational activities. One of the stated goals of the Project on Death in America of the Open Society Institute is to "understand and transform the culture and experience of dying and bereavement in America." Among recent educational efforts are the National Public Radio series "The End of Life: Exploring Death in America" and the PBS television series "On Our Own Terms: Moyers on Dying in America." There are thousands of web pages on end-of-life issues, various aspects of dying, funerals, and grief, as well as online support services. Most professional organizations concerned with death offer a wealth of information and resources on their web sites. Citizens' organizations present their views and perspectives in print and on the web.

Many communities periodically offer adult education programs, lecture series, seminars, and similar formats. And many colleges, universities, hospices, and hospitals either design programs for the community or invite the public to conferences.

Death Education in Public Schools

Daniel Leviton, a pioneer in the field of death and dying, first articulated the rationale for teaching children about death. In 1977 Leviton, and in 1979 Eugene Knott, redefined early goals. Over the years numerous instructional guidelines and resources were developed for incorporating the study of death and dying into various subject areas taught in public schools.

A 1990 national survey of U.S. public schools conducted by Hannelore Wass, Gordon Thornton, and David Miller, however, found that only a fifth of the high schools, 15 percent of the middle schools, and less than a tenth of the elementary schools incorporated the study of death into their curricula. Those who did tended to include it in health science or family life. Goals were to better prepare for life, to appreciate life and health, and to be less afraid of death.

While most schools have established protocols for crisis intervention (grief counseling and support), preventive education through the study of death, dying, and bereavement has remained a controversial issue. Some parents say it infringes upon their and the church's domain. Some critics point to inadequate teacher preparation. There has been a concern that such study would induce anxiety and heighten fears in students. These concerns combined with increasing pressures to teach complex technological concepts and other basic skills, make it unlikely that the subject of death will be viewed as a part of the school's curriculum. But proponents of death education insist on the need to also address the life and people problems of today and help students to learn skills to solve them. Understanding and appreciating oneself, others, and life, learning ways to manage anger and frustration; developing attitudes of tolerance, respect, empathy, and compassion all contribute to a high quality of life. These may be basic ingredients of long-term primary prevention of destructive behavior and serve as an antidote to the distorted perceptions children form from the entertainment media.

Reduction of Death Anxiety As a Goal in Death Education

Professionals disagree on the question of death anxiety reduction as a desirable or appropriate general goal for efforts in death education. Some leaders believe it is unrealistic to expect that a one-semester-length course of instruction in large classes can alleviate the negative affect of death. Instructors seldom know anything about individual students' feelings and personal experiences with death at the beginning of the instruction. Unless time is provided for sharing of experiences and concerns in class (or out of class), it may be difficult to assess students' attitudes and gauge affective changes. Additionally, changes may be too subtle to notice, or may be dormant for many months.

In continuing professional education, the concern has been whether a short-term workshop for health professionals—often not more than twenty hours in length—provides sufficient time to address the complex issues of death attitudes and to bring about attitude changes. Nonetheless, for students preparing to become health professionals, caring for dying and bereaved persons and their families, it is considered essential that they confront their own death-related feelings and learn to cope with them. There is evidence and a firm belief among thanatologists that negative feelings interfere with a person's effectiveness in helping others.

The concern that teaching children about death will induce or heighten death fears and anxieties may need reconsideration as well. Adults tend to be protective of children. At the same time, they also seem confident that children can withstand the onslaught of cultural and actual violence in their environment. This may be wishful thinking, however. Children do have fears and concerns about death. Studies of older children with life-threatening illness have shown that being given detailed information about diagnosis, prognosis, and treatment options lowered their death anxieties, suggesting that knowledge may give children a measure of control. This may be true for healthy children as well. Improved and specific information about the consequences of risk-taking behavior in adolescents, or even the process of discussing these matters, may reduce death anxiety children already have and help prevent risk-taking behaviors. Considering the complexity of the issues, it is important to include study of death-related attitudes in the curricula of prospective teachers at any level.

Evaluation

While basic assumptions and goals of death education may be agreed on, wide variation in specific objectives, populations, and settings have made it difficult to establish general standards and to evaluate the overall effectiveness of the diverse efforts. Because thanatology (the study of death) has become a complex multidisciplinary field with a considerable amount of research, scholarship, and practice, and because the subject is personal and intimate, death education is challenging and requires solid qualification. There seems to be agreement on a number of basic competencies of an effective death educator:

• • confrontation of personal mortality and comfort with the topic of death;
• • knowledge of the subject matter and commitment to keep up with new developments;
• • ability to develop objectives consistent with the needs, interests, and educational levels of learners;
• • familiarity with basic principles of learning and instruction;
• • knowledge of group dynamics; and
• • skills in interpersonal communication and, when necessary, in identifying students' needs for support and counseling.

ADEC is currently developing standards for training death educators based on teacher competencies.

Numerous empirical studies have been conducted to provide objective data on the effects of death education. Most of these are done with college students taking a semester-length course or with health care professionals participating in short courses or workshops. Joseph A. Durlak and Lee Ann Reisenberg conducted a meta-analysis of forty-six controlled outcome studies. They concluded in 1991, reevaluated by Durlak in 1994, that death education was fairly successful in achieving cognitive learning goals, in changing cognitive attitudes on death-related issues and death-related behaviors (e.g., making out a will, talking with dying patients). Findings on changes in affect (death fears and anxieties), however, were inconsistent, depending in part on the teaching methods employed: Emphasis on experiential methods was more likely to result in slight decreases in fears, and emphasis on didactic methods had no or slightly negative effects.

Conclusion

Education about death, dying, and bereavement has been instrumental in educating professionals and significant in informing the public. In general, substantial progress has been made identifying broad goals and specific objectives, designing curricula, developing resources, and reaching the populations to be addressed—college students, health care professionals, and the general public. Death education is minimal in the public schools. Leaders in the field, however, consider it an important component of the schools' curricula. Such education could be part of children's preparatory cultural education and could serve as primary prevention of violence by promoting life-affirming and constructive attitudes and behavior toward self and others.

Professional organizations concerned with death, dying, and bereavement demonstrate leadership by developing, expanding, or refining standards of practice and providing educational resources. The concerted efforts to educate physicians and nurses in end-of-life care are impressive. They also illustrate the importance of financial resources in bringing about change. Modest progress has been made in evaluating death education. The challenge of achieving an overall objective evaluation of educational outcomes remains. State-of-the-art death-related content needs to be reflected in the educational curricula for professionals. All groups can benefit from studying the larger social and cultural contexts in which they live and work. Advances in the communications technologies enabling rapid information gathering—and sharing—and the increasing use of these technologies for online distance learning and teaching can greatly facilitate and enhance death education at all levels.

See also: Cadaver Experiences; Children and Adolescents' Understanding of Death; Feifel, Herman; Grief Counseling and Therapy; Taboos and Social Stigma

Bibliography

Benoliel, Jeanne Quint. "Death Influence in Clinical Practice: A Course for Graduate Students." In Jeanne Quint Benoliel ed., Death Education for the Health Professional. Washington, DC: Hemisphere, 1982.

Dickinson, George E., and A. C. Mermann. "Death Education in U.S. Medical Schools, 1975–1995." Academic Medicine 71 (1996):1,348–1,349.

Durlak, Joseph A. "Changing Death Attitudes through Death Education." In Robert A. Neimeyer ed., Death Anxiety Handbook: Research, Instrumentation, and Application. Washington, DC: Taylor & Francis, 1994.

Durlak, Joseph A., and Lee Ann Reisenberg. "The Impact of Death Education." Death Studies 15 (1991):39–58.

Ferrell, Betty R. "Analysis of End-of-Life Content in Nursing Textbooks." Oncology Nursing Forum 26 (1999):869–876.

International Work Group on Death, Dying, and Bereavement. "A Statement of Assumptions and Principles Concerning Education about Death, Dying, and Bereavement." Death Studies 16 (1992):59–65.

Knott, J. Eugene. "Death Education for All." In Hannelore Wass ed., Dying: Facing the Facts. Washington, DC: Hemisphere, 1979.

Leviton, Daniel. "The Scope of Death Education." Death Education 1 (1977):41–56.

Rabow, Michael W., Grace E. Hardie, Joan M. Fair, and Stephen J. McPhee. "End-of-Life Care Content in Fifty Textbooks from Multiple Specialties." Journal of the American Medical Association 283 (2000):771–778.

Wass, Hannelore. "Healthy Children and Fears about Death." Illness, Crisis, and Loss 6 (1998):114–126.

Wass, Hannelore. "Death Education for Children." In Inge B. Corless, Barbara B. Germino, and Mary A. Pittman eds., A Challenge for Living: Dying, Death, and Bereavement. Boston: Jones and Bartlett, 1995.

Wass, Hannelore, M. David Miller, and Gordon Thornton. "Death Education and Grief/Suicide Intervention in the Public Schools." Death Studies 14 (1990):253–268.

Internet Resources

"Hospice and Palliative Training for Physicians: Unipacs." In the American Academy of Hospice and Palliative Medicine [web site]. Available from www.aahpm.org/unipac's.htm.

"Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care." In the American Association of Colleges of Nursing [web site]. Available from www.aacn.nche.edu/Publications/deathfin.htm.

"Recommended Curriculum Guidelines for Family Practice Residents: End-of-Life Care." In the American Academy of Family Physicians [web site]. Available from www.aafp.org/edu/guidel/rep269.html.

University of Washington School of Nursing and Massachusetts Institute of Health Professions. "Tool-Kit for Nursing Excellence at End of Life Transition." In the University of Washington School of Nursing [web site]. Available from www.son.washington.edu/departments/bnhs/research.asp.

HANNELORE WASS