END-OF-LIFE ISSUES AND CARE FOR ADULTS

February 2001

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.

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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