CHARGE A: Address the Invisibility of Psychology Around the Issue of End of-Life Care and Recommend Methods to Increase the Visibility of Psychology and the Role of Psychologists in this Arena

Conclusion
Recommendations

There are a number of ways people can look at a field to determine whether a particular profession has been active in a given subject area. For example, one could study the curricula in undergraduate and graduate programs; determine if the professional association has developed policies, guidelines, or other initiatives in the area; look at the number of members involved in policy discussions or testifying before legislative committees; count the number of presentations at professional meetings or conventions; count the number of publications in the profession's flagship journals; ascertain how many members of the profession are heavily involved in organizations that produce research, education, or practice on a given topic; and so forth. Using any of these measures, it seems appropriate to conclude that psychology is a latecomer to professional discussions concerning end-of-life issues in general as well as the specific case of assisted suicide. Although some psychologists have made important contributions to the field, there is little evidence that the discipline of psychology as a whole has considered end-of-life issues to be an important area that deserves substantial professional time and attention.

Other organizations have been far more active in the end-of-life arena. For example, the Hospice Foundation of America sponsors an annual national teleconference on issues related to the end of life. The Association for Death Education and Counseling (ADEC), the largest interdisciplinary organization of professionals dealing with education and counseling of dying and bereaved persons, publishes a newsletter, sponsors journals, holds an annual conference, and provides a certification program for death educators and bereavement therapists.

An extensive, systematic study of psychology's participation in end of-life matters could not be done within the time and funding parameters of this Working Group. However, some preliminary evidence that substantiates psychology's lack of participation in this area was found. For example, there are only 60 psychologists among the approximately 2000 members of ADEC. There is no mention of dying or death or end-of life decisions in either the APA accreditation guidelines for psychology programs or the APA Code of Ethics. No psychologists have provided testimony to Federal legislative committees involved with end-of-life issues.

A search of the Uncover database, which contains over 8,800,000 articles from well over 18,000 multidisciplinary journals, for articles on the topic of assisted suicide was made for the period between January and May of 1998. This search produced a total of 152 articles. Of those 152 articles, 47 appeared in law journals, 18 were published in medical journals, and 41 appeared in hospital, ethics, dying and death, aging, and nursing journals. During that same period, no APA journals published any articles on assisted suicide. Although psychologists are likely to be found among the authors of some of these articles, it is nonetheless significant that none of these articles were published in APA journals.

In addition, a review of the APA programming at the annual APA Convention during the years of 1994 through 1999 was conducted. Approximately 8800 separate events (e.g., presentations, symposia, poster sessions, workshops, etc.) were offered at APA Conventions during these years. In that period, there were only nine events related to dying and death, 14 events related to assisted or rational suicide, and three events associated with death-related loss. Of those 26 events, nine were symposia, six were films, three were poster sessions, one was a discussion session, one was a conversation hour, and six were continuing education workshops (approximately 360 continuing education workshops were offered from 1994-1999). It is important to note that only one of the six continuing education workshops was devoted entirely to end-of life issues. It is also worth noting that a continuing education workshop on end-of-life issues and assisted suicide scheduled for presentation in 1999 was canceled because of lack of enrollment.

There is also evidence that other professions do not recognize psychology as an important discipline when discussing end-of-life decision-making. For example, the excellent report by the Institute of Medicine, entitled Approaching Death: Improving Care at the End of Life (Field & Cassel, 1997), discusses psychosocial care for dying persons, but does not include psychologists as members of the interdisciplinary team for palliative home care or as members of a hospital-based palliative care team. The report specifies that members of such a hospital-based team might include "one or more physicians, specialist nurses, social workers, pharmacists, and chaplains" (p. 112). Psychologists and psychiatrists are conspicuous by their absence.

The good news is that there has been more activity on end-of-life issues within the discipline in recent years. APA published a master lecture series book on helping people living with serious illness (Costa & VandenBos, 1990). The appointment of this Working Group is an example of increased interest and involvement. In addition, a section of a recent issue of Professional Psychology: Research and Practice (June, 1999) was devoted to the subject; Psychology, Public Policy, and Law will have a special issue on "hastened death" in June, 2000; and The Counseling Psychologist's July, 2000 theme issue is on suicide, and includes a long article on rational/assisted suicide. The APA Office of AIDS has produced training materials on dealing with end-of-life issues when working with persons with HIV/AIDS. Finally, there is one chapter devoted to dying and death in the new Encyclopedia of Psychology (Kazdin, 2000). These developments are evidence that the discipline has become aware of the need for more education, research, practice involvement, and policy formation around issues concerning the end-of-life period.

Although individual psychologists have been productive in addressing issues related to end-of-life decision-making, there is little evidence that organized psychology has played an important role in discussing quality of care for dying persons, producing a body of research concerning end-of-life decision-making, engaging in the national discourse on end of-life care and public policy, or in educating its own members regarding this important final stage of life. However, recent developments do indicate that psychology as a discipline has begun to view end-of-life issues as a legitimate and important topic to be included in practice, education, research, and policy.

The following recommendations are made in order to increase the visibility of psychology and the role of psychologists in the arena of end of-life decision-making.

1. Conduct a survey of all APA divisions and state and provincial psychological associations to determine if they have formed, or are interested in forming, interest groups on end-of-life issues. Encourage interest groups to organize programming at national, state, and regional conventions and meetings. Encourage interest groups to assist in assessing how well palliative care is being addressed in the context of managed care.
2. Develop a mechanism to identify and involve experts from the various divisions in order to implement the various recommendations of the Report (e.g., experts in media psychology).
3. Publish the report of the Working Group in an appropriate APA journal such as Professional Psychology: Research and Practice or the American Psychologist.
4. Publish the final version of the Resource Guide as an APA book.
5. Sponsor a master lecture series on end-of-life care and publish the proceedings as a book.
6. Develop and deliver a continuing education program for practicing psychologists on end-of-life issues and assisted suicide. Offer the program on-line through the APA website and on-site at the national APA Convention and state and provincial psychological association conventions.
7. Organize an area on the APA website that provides key end-of-life documents, an end-of-life bibliography, names and contacts of other psychologists interested in end-of-life issues, links to other relevant websites, and a listing of times for chat rooms to operate for psychologists interested in the area.
8. Encourage the editors of appropriate APA journals to publish special issues on end-of-life topics.
9. In cooperation with organizations such as the National Hospice and Palliative Care Organization, the Hospice Foundation of America, and the Department of Veterans Affairs, co-sponsor teleconferences concerning end-of-life issues with downlinks at various institutions where psychologists and other professionals could facilitate discussion groups.
10. Plan and implement a Public Interest MiniConvention on end-of-life decision-making and care.
11. Work with the Public Communications Department of APA to produce psychological science-based educational materials targeted to specific audiences (e.g., mental health workers, people living with terminal illnesses, families of people with terminal illnesses, etc.). Educational materials for mental health workers should encourage them to examine the ethical and legal (both criminal and civil) implications of providing services to clients and families considering requests for medical interventions that may affect the timing of death.
12. Adopt official APA policy statements on end-of-life decisions and assisted suicide such as those provided in Appendices D and E.

Introduction
Section 1 | Section 2 | Section 3 | Section 4
References
Appendix A | Appendix B | Appendix C
Appendix D | Appendix E | Appendix F
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