A qualitative study in this week’s issue of The Lancet provides a new insight into why patients request euthanasia or physician-assisted suicide. Results of the study have implications for both clinicians and policymakers.

Physical "disintegration" and "loss of community" - the "progressive diminishment of opportunities to initiate and maintain close personal relationships" - combine to give HIV patients a feeling of "loss of self" that contributes to their desires for euthanasia or assisted suicide. Researchers from the Joint Center for Bioethics at the University of Toronto interviewed 32 HIV patients who participated in the HIV Ontario Observational Database from November 1996 to June 1998 about their feelings on euthanasia and assisted suicide and asked under what circumstances they might consider either practice.

Sixty-three percent of participants said they would pursue euthanasia or assisted suicide as a means of ending their lives, while 9% said they had rejected the idea and 28% remained undecided. Many of those interviewed said that physical deterioration led to "dependency" on others, something they found "intolerable," and survey participants "frequently" expressed a desire to maintain a sense of "dignity." Loss of community resulted from a loss of mobility, "exclusion and alienation by others" and the patient's own "isolating actions," resulting from a "fear of rejection." These factors combined to give patients a feeling that "their fundamental nature or essence had been irrevocably eroded, or that this was at risk of occurring," the study authors state. Participants determined that euthanasia and assisted suicide were a "means of limiting" the feeling of loss of self, and none indicated a desire to pursue either practice "outside of the circumstances that led to their perception of loss of self."

Factors that lead to a feeling of loss of community, such as "disownment" by family, stigmatization and histories of drug and/or sexual abuse, suggest that the decision to pursue euthanasia or assisted suicide could be altered if "meaningful changes in individuals' social circumstances" were made, "independently from disease progression," the authors note. Because guidelines governing euthanasia or assisted suicide policy are drawn "mainly within the doctor-patient relationship" they might "obscure the role" of these "broader social influences," they conclude (Lavery et al., Lancet, 8/4).

In an accompanying commentary, Anthony Back and Robert Pearlman from the University of Washington, Seattle, point out that these findings have important implications for both clinicians and policymakers. Project on Death in America Faculty Scholar Anthony Back comments: “For clinicians, this work is a kind of road map into the world of a person with a life-threatening illness who is considering physician-assisted suicide. The complexity of loss of self suggests why simpler explanations, such as pain, depression, or high-control personality, each fail as individual explanations for the desire for assisted suicide. This complexity underscores the need for clinicians to consider the evaluation of a request for physician-assisted suicide as an important clinical skill." For policymakers, Lavery and colleagues point out that policies asking clinicians to make judgments about whether a patient has “intolerable suffering” do not address the loss of community described in this study. What they do not point out is that policies requiring clinicians to decide whether a patient has suffered enough, or has lost enough, or is isolated enough, are judgments that cannot be captured neatly in policy guidelines. What policymakers could do in responding to physician-assisted suicide would be to require that availability of reasonable palliative care be taken into account in any patient’s decision-making process about assisted suicide. Such a requirement could set a benchmark standard for palliative care that would be useful in the USA, where expert palliative care is not reliably available. However, even discussing policies that presume that physician-assisted suicide is allowable in some circumstances is enough to push more than a few hot buttons” (Back/Pearlman, Lancet, 8/4).

The mission of the Project on Death in America is to understand and transform the culture and experience of dying and bereavement through initiatives in research and scholarship, and to foster innovations in the provision of care, public education, professional education, and public policy. PDIA is one of the Open Society Institute’s U.S. Programs, part of the Soros network of Foundations. OSI-US promotes programs that strengthen democracy and address barriers to justice and opportunity.

Additional Contact Information

Dr. James Lavery
Division of Advanced Studies and Policy Analysis,
Fogarty International Center, National Institutes of Health
Building 16 Room 211
16 Center Drive MSC 6705
Bethesda Maryland 20892-6705
Phone: 301-496-1739
Fax: 301-496-8496
Email: lavery@mail.nih.gov

Dr. Anthony Back
Veterans Affairs Puget Sound Health Care System
University of Washington
Seattle WA 98108
Phone: 206-277-1044
Fax: 206-277-2689
Email: tonyback@u.washington.edu