Formation of APA Working Group on Assisted Suicide and End-of-Life Decisions

Activities and Process of the APA Working Group
Organization of the Report to the Board
Scope of the Report to the Board

In June of 1997, the Supreme Court held that assisted suicide is not a constitutionally protected right and that its legality is left up to the states (Vacco v. Quill and Washington v. Glucksberg). In anticipation of the rulings, in April of 1997, the American Psychological Association (APA) Public Communications Office, in collaboration with the Public Interest Directorate, established a working group to create a briefing paper on mental health issues involved in physician-assisted suicide and other end-of-life decisions. This paper was intended to inform news media coverage about assisted suicide anticipated in conjunction with the Court's decision. The briefing paper was subsequently converted into a public information brochure entitled Terminal Illness and Hastened Death Requests: The Important Role of the Mental Health Professional and then later published as a journal article in Professional Psychology: Research and Practice (Farberman, 1997).

In August of 1997, the APA Board of Directors distributed the information brochure to governance boards and committees of APA and asked them to make recommendations about whether APA should take further action in the area of assisted suicide and end-of-life decisions. In February of 1998, after reviewing recommendations from governance boards and committees, the APA Board of Directors authorized the formation of the Working Group on Assisted Suicide and End-of-Life Decisions (Working Group). The Working Group was charged with the following tasks:

1. Examine the role of psychology in end-of-life decisions and quality of care issues;
2. Address the invisibility of psychology around the issue of end-of-life decisions and recommend methods to increase the visibility of psychology and the role of psychologists in this arena;
3. Consider and make recommendations on whether it might be appropriate for APA to take a position on the issue of assisted suicide and end-of-life decisions.

In April of 1998, a selection subcommittee composed of three members of the APA Board for the Advancement of Psychology in the Public Interest (BAPPI), invited the following individuals to serve as members of the Working Group: Silvia Sara Canetto, Ph.D.; David Clark, Ph.D.; Dolores Gallagher-Thompson, Ph.D.; Judith R. Gordon, Ph.D. (Chair); Therese Rando, Ph.D.; Judith Stillion, Ph.D.; and James L. Werth, Jr., Ph.D. Dr. Clark attended the first meeting of the Working Group and then was no longer able to participate.

The Working Group met in Washington DC on July 25-26,1998, October 24-25, 1998, and December 10-12, 1999. Members of the Working Group decided to work on two companion documents in response to the three charges articulated by the APA Board of Directors. This document, The Report to the Board of Directors of the American Psychological Association from the Working Group on Assisted Suicide and End-of-Life Decisions (the Report to the Board), responds directly to the charges and provides a brief overview of end-of-life issues as they pertain to the field of psychology. The Report to the Board also contains recommendations for immediate consideration by the APA Board of Directors. A second document, The Resource Guide on End-of-Life Issues (the Resource Guide), is intended to provide more detailed coverage of many of the issues discussed in the Report to the Board. The Resource Guide is envisioned as a general background reference for psychologists interested in end-of-life issues as they pertain to practice, education, research, and policy. The Resource Guide is also conceptualized as a core resource from which a variety of educational publications for psychologists and the public could be produced in the future. Both the Report to the Board and the Resource Guide were drafted by members of the Working Group and the APA staff liaison, John Anderson, Ph.D. The Resource Guide is currently in the middle phase of development (see Appendix A for a detailed, annotated outline).

A large, multidisciplinary Advisory Committee to the Working Group was created to review and comment on preliminary drafts of both documents. The Advisory Committee is comprised of 43 experts in the field of end-of-life decisions and assisted suicide (see Appendix B). A variety of disciplines and a diversity of views are represented on the Advisory Committee. Particular attention was paid to involving experts who advanced the views of communities with special concerns about the topics under discussion (e.g., women, people with disabilities, older persons, and members of ethnic and other minority communities). Drafts of both the Report to the Board and the Resource Guide were sent to the entire Advisory Committee, and 24 of the 43 members provided comments and/or recommendations for modification. Feedback from the Advisory Committee was incorporated into subsequent drafts of the Report to the Board and feedback will be incorporated into the final draft of the Resource Guide.

During the Spring 2000 Consolidated Meeting, APA governance boards and committees were asked to review the Draft Report to the Board and provide suggestions for modification. Suggestions from boards and committees were incorporated into this final version of the Report to the Board. The Report to the Board was submitted to the APA Board of Directors at its June 2000 meeting.

The Report to the Board is organized into four main sections. Section One provides a general orientation to end-of-life decision-making. This orientation includes a review of historical changes in end-of-life care, an overview of common end-of-life challenges, a discussion of controversies associated with different terms and definitions, and a presentation of critical contextual factors that affect end-of-life care. In Section Two, the relative invisibility of psychology in the arena of end of-life care is addressed. Section Three discusses current and potential roles for psychologists who are interested in working with end-of-life issues. Section Four addresses the question of whether APA should adopt a position with respect to end-of-life issues and assisted suicide.

For the purposes of this report, the period designated as "end of life" is considered to begin when a person who has been diagnosed with a terminal illness that is incurable and irreversible has reached the point where appropriate parties such as the physician, the dying person, or significant others have concluded that further treatment is futile or unwarranted. The scope of this report is limited to discussion of end-of-life decisions and assisted suicide for adults. It does not cover end-of-life issues as they relate to minors because to do so would require a thorough and thoughtful consideration of child and adolescent cognitive development, family structure and dynamics, and the rights of parents versus the rights of children. The importance and complexity of end-of-life care for children and adolescents suggest the need for addressing these issues in a separate report by psychologists with specialized expertise in the areas cited above. In addition, this report does not cover end-of-life decision-making in situations where individuals have been determined to be clearly incompetent to make informed health care decisions, such as when they are experiencing advanced dementia or are in a coma. To cover those types of situations would require examination of a wide variety of medical and legal issues related to competency and guardianship. Again, the importance and complexity of these issues suggest the need for a separate report by psychologists with specialized expertise in the areas cited above.

It should be noted that the definition of "end of life" is open to interpretation. For example, in hospice care a terminal diagnosis is currently given when life expectancy is six months or less. However, this time frame was chosen because it was necessary to determine when someone would qualify for Medicare reimbursement for such care. The six-month period has been challenged as arbitrary and based on economic, not scientific, reasons. The determination of futility of care is also subject to debate and open to serious disagreements among family members and/or between family and the medical team. The determination of incompetence is also considered by some to be based on sociocultural constructs and subject to bias.

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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