APA Activities on End-of-Life |
APA Working Group on Assisted Suicide and End-of-Life Decisions
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:
- Examine the role of psychology in end-of-life decisions and quality of care issues;
- 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;
- 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.
In August of 2000, the Council of Representatives received the final Report to the Board of Directors from the APA Working Group on Assisted Suicide and End-of-Life Decisions (Report to the Board ) with thanks. The Report to the Board can be obtained in both PDF and HTML formats at the following web site:
http://www.apa.org/pi/aseolf.html.
References
Farberman, R. K. (1997). Terminal illness and hastened death requests: The important role of the mental health professional. Professional Psychology: Research and Practice, 28, 544-547.
Vacco v. Quill, 117 S.Ct. 2293 (1997).
Washington v. Glucksberg, 117 S.Ct. 2258 (1997).
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APA Ad Hoc Committee on End-of-life Issues
In August of 2000, the Council of Representatives also voted to approve the inclusion of $26,000 in the 2001 Preliminary Budget for the establishment of a cross-constituency 5-person Ad Hoc Committee on End-of-Life Issues directed to provide oversight and leadership in implementing the recommendations of the Working Group on Assisted Suicide and End-of-Life Decisions, and as part of its charge, to explore and apply for external funding to continue implementation of the recommendations of the Working Group.
A call for nominations for the Ad Hoc Committee on End-of-Life Issues was published in the APA Monitor and the APA AIDS Office newsletter, the Psychology and AIDS Exchange. The call for nomination was sent to the President, President-Elect, and newsletter editor of all APA divisions, all members of the original APA Working Group on Assisted Suicide and End-of-Life Decisions, and all members of the Advisory Committee of the Working Group on Assisted Suicide and End-of-Life Decisions. Those interested in applying were required to submit their letter of application and curriculum vita no later than January 22, 2001. Thirty-nine completed applications were received.
All application materials were forwarded to the Executive Committee (EC) of the Board for the Advancement of Psychology in the Public Interest (BAPPI). During a conference call on February 12, 2001, members of the EC of BAPPI (i.e., Drs. Tar, McDonald & Root) selected following individuals to be members of the new Ad Hoc Committee on End-of-Life Issues:
JUDITH M. STILLION, Ph.D. (Selected as Chair)
Kennesaw State University
Kennesaw, GA
WILLIAM E. HALEY, Ph.D.
University of South Florida
Tampa, FL
DONNA M. KWILOSZ, Ph.D.
University Hospitals of Cleveland
Cleveland, Ohio
ROBERT A. NEIMEYER, Ph.D.
University of Memphis
Memphis, TN
SHARON M. VALENTE, Ph.D.
Veterans Administration Greater Los Angeles Healthcare System
Los Angeles, California
JAMES L. WERTH, JR., Ph.D.
University of Akron
Akron, Ohio
Members of the Ad Hoc Committee on End-of-Life Issues will be required to attend two, three-day committee meetings per year in Washington, DC. One meeting will be held on April 20-22, 2001 and the other meeting will be held on a Friday, Saturday and Sunday in September or October of 2001. Members will also participate in periodic conference calls. Between meetings and conference calls, members will be expected to devote a substantial portion of time to writing, coordinating, networking and other activities associated with implementing the recommendations of the Report to the Board.
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APA Resolution on End-of-Life Issues and Care
Whereas the nature of dying and death has changed across the twentieth century, occurring primarily in an institutional setting rather than at home (Benoliel & Degner, 1995); and
Whereas death has become more frequently the result of chronic illness (Battin, 1996); and
Whereas medicine and technology have evolved to the point where the terminal period can be significantly prolonged (Field & Cassel, 1997); and
Whereas there are many more people living longer with terminal diagnoses and thus having more time to make end-of-life decisions; and
Whereas end-of-life decision-making is complex, involving areas of ethics, religion, medicine, psychology, sociology, economics, the law, public policy, and other fields; and
Whereas the population of the United States is aging, resulting in larger numbers of people who may request psychological support in making end-of-life decisions; and
Whereas in the United States there is significant social stratification related to cultural, ethnic, economic, gender, and religious differences; and
Whereas this diversity in our society leads to an equally diverse range of views regarding end-of-life care and decisions;
Whereas reasonable, well-informed people starting from different values and priorities concerning what is valuable at the end of life can and do hold different positions regarding end-of-life care and decisions; and
Whereas autonomy is an important guiding principle in the law and in medical, ethical, and psychological aspects of decision-making, but in and of itself is insufficient to capture the full range of complex medical, familial, social, financial, psychological, cultural, spiritual, and legal issues involved in end-of-life decision-making; and
Whereas there is increasing public support for control over end-of-life decisions but this support is weakest among groups who express concerns about being pressured to die (i.e., older adults, people with less education, women, and ethnic minorities) (Blendon, Szalay, & Knox, 1992); and
Whereas in the United States medical end-of-life decisions are made in a context of serious social inequities in access to resources such as basic medical care; and
Whereas some evidence suggests that there are fluctuations in the will to live (Chochinov, Tataryn, Clinch, & Dudgeon, 1999) and in wishes regarding life-sustaining treatments (Weisman, Haas, & Fowler, 1999); and
Whereas pain and clinical depression are frequently under-treated, which can lead to suffering that may result in requests for, or assent to, medical interventions that affect the timing of death (Foley, 1995); and
Whereas more people are aware of the possible benefits to be gained by using psychological services to help them make end-of-life decisions; and
Whereas psychology has been largely invisible in the end-of-life arena; and
Whereas psychologists have many areas of competence, including assessment, counseling, teaching, consultation, research, and advocacy skills that could potentially contribute to the science of end-of-life care and to the treatment and support of dying persons and their significant others; and
Whereas psychological research on end-of-life issues is limited in comparison with the magnitude of the issue; and
Whereas there have been no systematic efforts to educate psychologists about end-of-life issues; and
Whereas psychologists in clinical practice have not typically been involved in end-of-life decisions to the degree that they could be; and
Whereas psychologists could assume a significant role in helping health care providers to understand and cope with the concerns and needs of dying individuals and their families; and
Whereas psychologists could be instrumental in supporting public education efforts to raise awareness of issues related to dying, death, grief, mourning, and loss;
Therefore, be it resolved that the American Psychological Association, an organization committed to promoting the psychological well-being of individuals across the life span, should redress psychology's historical under-commitment to end-of-life care by actively promoting and supporting psychology's involvement in end-of-life care. In order to advance this involvement, be it further resolved that the American Psychological Association:
Promote and encourage research and training in the area of end-of-life issues within psychology programs at all levels; and
Encourage and promote the development of a research agenda on end-of-life issues; and
Support efforts to increase funding for research associated with end-of-life issues; and
Encourage psychologists to obtain training in the area of ethics as it applies to end-of-life decisions and care; and
Promote and facilitate psychologists' acquisition of competencies with respect to end-of-life issues, including mastery of the literature on dying and death and sensitivity to diversity dimensions that affect end-of-life experiences; and
Encourage practicing psychologists to be aware of their own views about the end of life, including recognizing possible biases about entitlement to resources based on disability status, age, sex, sexual orientation, or ethnicity of the client making end-of-life decisions; and
Encourage psychologists to be especially sensitive to the social and cultural biases which may result in some groups and individuals being perceived by others, and/or being encouraged to perceive themselves, as more expendable and less deserving of continued life (e.g., people with disabilities, women, older adults, people of color, gay men, lesbians, bisexual people, transgendered individuals, and persons who are poor); and
Support interdisciplinary efforts to increase the competency of psychologists and other health care professionals in end-of-life issues; and
Promote quality end-of-life care including palliative care, access to hospice services, support for terminally ill people and family members, accurate assessment of depression and cognitive capabilities of dying persons, and assistance with end-of-life decision-making; and
Advocate for access to, and reimbursement for, professional mental health services for seriously ill individuals and their families; and
Promote and support public policies that provide for the psychosocial services for dying individuals and their families; and
Support psychologists who wish to participate in ethics committees dealing with end-of-life issues; and
Support psychologists as they work cooperatively with caregivers, medical providers, and multidisciplinary teams to enhance understanding of the psychological aspects of dying and death and to improve quality of care for the dying; and
Endorse the following principles on end-of-life care as articulated in the Institute of Medicine Report entitled Approaching Death: Improving Care at the End of Life (Field & Cassel, 1997):
- Care for those approaching death is an integral and important part of health care;
- Care for those approaching death should involve and respect both patients and those close to them;
- Good care at the end of life depends on clinicians with strong interpersonal skills, clinical knowledge, technical proficiency, and respect for individuals, and it should be informed by scientific evidence, values, and personal and professional experience;
- The health community has a special responsibility for educating itself and others about the identification, management, and discussion of the last phase of fatal medical problems;
- More and better research [in the areas of biomedical, clinical, psychosocial, and health services] is needed to increase our understanding of clinical, cultural, organizational, and other practices or perspectives that can improve care for those approaching death;
- Changing individual behavior is difficult, but changing a culture or an organization is potentially a greater challenge -- and often is a precondition for individual change.
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References
Battin, M. P. (1996). The death debate: Ethical issues in suicide (pp. 175-203). Upper Saddle River, NJ: Prentice-Hall.
Benoliel, J .Q. & Degner, L. F. (1995) Institutional dying: A convergence of cultural values, technology, and social organization. In H. Wass & R. A. Neimeyer (Eds.) Dying: Facing the facts (pp. 117-141). Washington, DC: Taylor and Francis.
Blendon, R. J., Szalay, U. S., & Knox, R. A. (1992). Should physicians aid their patients in dying? The public perspective. Journal of the American Medical Association, 267, 2658-2662.
Chochinov, H. M., Tataryn, D., Clinch, J. J., & Dudgeon, D. (1999). Will to live in the terminally ill. Lancet, 354, 816-819.
Field, M. J., & Cassel, C. K. (Eds.). (1997). Approaching death: Improving care at the end-of-life. Washington, DC: National Academy Press.
Foley, K. M. (1995). Pain, physician-assisted suicide, and euthanasia. Pain Forum, 4,
63-178.
Weisman, J. S., Haas, J. S., & Fowler, F. J. (1999). The stability of preferences for life
sustaining care among persons with AIDS in the Boston Health Study. Medical Decision
Making, 19, 16-26.
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APA Resolution on Assisted Suicide
Whereas the issue of assisted suicide is complex, involving areas of ethics, religion, medicine, psychology, sociology, economics, the law, public policy, and other fields; and
Whereas in the United States there is significant social stratification related to cultural, ethnic, economic, gender, and religious differences; and
Whereas these differences in our society are associated with an equally diverse range of views regarding assisted suicide; and
Whereas in the United States decisions about assisted suicide are made in the context of serious social inequities in access to resources such as basic medical care; and
Whereas autonomy is an important guiding principle in the law and in psychological and medical aspects of decision-making, but in and of itself is insufficient to capture the full range of complex medical, familial, social, financial, psychological, cultural, spiritual, and legal issues involved in the practice of assisted suicide; and
Whereas there is increasing public support for assisted suicide, but this support is weakest among groups who express concerns about being pressured to die (i.e., older adults, people with less education, women, and ethnic minorities) (Blendon, Szalay, & Knox, 1992); and
Whereas reasonable, well-informed people starting from different positions about costs and gains associated with assisted suicide disagree about the potential effects of legalizing the practice; and
Whereas people with different values and priorities can reach different conclusions about the advisability of assisted suicide; and
Whereas some evidence suggests that there are fluctuations in the will to live (Chochinov, Tataryn, Clinch, & Dudgeon, 1999) and in wishes regarding life-sustaining treatments (Weisman, Haas, & Fowler, 1999); and
Whereas pain and clinical depression are frequently under-treated, which can lead to suffering that may result in requests for assisted suicide (Foley, 1995); and
Whereas evidence suggests that some people rescind their requests for assisted suicide when they receive more aggressive and comprehensive care (Ganzini et al., 2000); and
Whereas psychological, familial, social, and financial factors seem to be more important than physical factors in requests for assisted suicide (Breitbart, Rosenfeld, & Passik, 1996; Emanuel, Fairclough, Slutsman, & Emanuel, 2000; Sullivan, Hedberg, & Fleming, 2000); and
Whereas little empirical data exist to determine the effects of assisted suicide on survivors and on society (Cooke et al., 1998); and
Whereas the empirical database, legal developments, and policy discourse related to assisted suicide are evolving rapidly;
Therefore, be it resolved that the American Psychological Association take a position that neither endorses nor opposes assisted suicide at this time.
However,
Given that psychologists have many areas of competence, including assessment, counseling, teaching, consultation, research, and advocacy skills that could potentially enlighten the discourse about assisted suicide, end-of-life treatment, and support for dying persons and their significant others; and
Given that psychologists could be instrumental in helping health care providers to understand and cope with the concerns and needs of dying individuals and their families; and
Given that practicing psychologists may receive requests to be involved in the education of various groups regarding assisted suicide; and
Given that there is one state in which assisted suicide is legal and psychological or psychiatric assessment and consultation is required under certain circumstances; and
Given that practicing psychologists may be part of multidisciplinary end-of-life care teams including ones exploring requests for assisted suicide;
Let it be further resolved that the American Psychological Association will assist in preparing the profession to address the issue of assisted suicide by taking the following actions:
Advocate for quality end-of-life care for all individuals; and
Encourage and promote the development of research on assisted suicide; and
Monitor legal, policy, and research developments that may require or encourage psychologists to involve themselves in assisted suicide cases; and
Promote policies that reduce suffering that could lead to requests for assisted suicide; and
Promote psychologists' involvement in research on ethical dilemmas faced by clinicians and researchers dealing with issues related to assisted suicide; and
Promote psychologists' participation in multidisciplinary teams and ethics committees involved with reviewing end-of-life requests; and
Encourage psychologists to obtain training in the area of ethics as it applies to end-of-life decisions and care; and
Encourage practicing psychologists to inform themselves about criminal and civil laws that have bearing on assisted suicide in the states in which they practice; and
Encourage practicing psychologists to recognize the powerful influence they may have with clients who are considering assisted suicide; and
Encourage psychologists to identify factors leading to assisted suicide requests (including clinical depression, levels of pain and suffering, adequacy of comfort care, and other internal and external variables) and to fully explore alternative interventions (including hospice/palliative care, and other end-of-life options such as voluntarily stopping eating and drinking) for clients considering assisted suicide; and
Encourage practicing psychologists to be aware of their own views about assisted suicide, including recognizing possible biases about entitlement to resources based on disability status, age, sex, sexual orientation, or ethnicity of the client requesting assisted suicide; and
Encourage psychologists to be especially sensitive to the social and cultural biases which may result in some groups and individuals being perceived by others, and/or being encouraged to perceive themselves, as more expendable and less deserving of continued life (e.g., people with disabilities, women, older adults, people of color, gay men, lesbians, bisexual people, transgendered individuals, and persons who are poor).
References
Blendon, R. J., Szalay, U. S., & Knox, R. A. (1992). Should physicians aid their patients in dying? The public perspective. Journal of the American Medical Association, 267, 2658-2662.
Breitbart, W., Rosenfeld, B. D., & Passik, S. D. (1996). Interest in physician-assisted suicide among ambulatory HIV infected patients. American Journal of Psychiatry, 153, 238-242.
Chochinov, H. M., Tataryn, D., Clinch, J. J., & Dudgeon, D. (1999). Will to live in the terminally ill. Lancet, 354, 816-819.
Cooke, M., Gourlay, L., Collette, L., Boccellari, A., Chesney, M. A., & Folkman, S. (1998). Informal care givers and the intention to hasten AIDS-related death. Archives of Internal Medicine, 158, 69-75.
Emanuel, E. J., Fairclough, D. L., Slutsman, J., & Emanuel, L. L. (2000). Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers. Annals of Internal Medicine, 132, 451-459.
Foley, K. M. (1995). Pain, physician-assisted suicide, and euthanasia. Pain Forum, 4, 163-178.
Ganzini, L., Nelson, H. D., Schmidt, T. A., Kraemer, D. F., Delorit, M. A., & Lee, M. A. (2000). Physicians' experiences with the Oregon Death with Dignity Act. New England Journal of Medicine, 342, 557-563.
Sullivan, A. D., Hedberg, K., & Fleming, D. W. (2000). Legalized physician-assisted suicide in Oregon -- The second year. New England Journal of Medicine, 342, 598-604.
Weisman, J. S., Haas, J. S., & Fowler, F. J. (1999). The stability of preferences for life
sustaining care among persons with AIDS in the Boston Health Study. Medical Decision
Making, 19, 16-26.
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