"Loss of Self" Most Important in Considering Physician-Assisted Suicide and Euthanasia

By Jenny Nolan, NRLC Department of Medical Ethics

Patients who would choose physician-assisted suicide or euthanasia do not do so because of unbearable pain or because of physical disintegration, according to a new study carried out by the University of Toronto Joint Centre for Bioethics.

Instead, "The desire for euthanasia or assisted suicide resulted from fear and experience of two main factors: disintegration and loss of community," conclude the authors of a study published in the prestigious British journal The Lancet. "These factors resulted in perceived loss of self," they wrote. "Euthanasia and assisted suicide were seen by participants as means of limiting loss of self."

The study, authored by Dr. James Lavery and others, was intended to answer the question, "What gives rise to desire for euthanasia or assisted suicide?" What separates Dr. Lavery et al.'s research, which included in-depth face-to-face interviews, from previous work on the subject is that the interviewers used open-ended questions that allowed the patients to discuss their feelings freely.

Anthony Back and Robert Pearlman, in a commentary published to accompany the article, observe, "Surprisingly little in the medical literature on such suicide is based on data gathered from patients. Only a few researchers have asked patients directly about their desires for physician-assisted suicide."

Referring to the study, Back and Pearlman note, "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 Lavery et al. study interviewed 32 people (31 men and one woman) who had been diagnosed with HIV-1 or AIDS. They were questioned about euthanasia, assisted suicide, and end-of-life medical care issues.

At the start of the interviews, which ranged in length from 40 to 120 minutes, 20 of the patients "reported they had already decided to pursue euthanasia or assisted suicide," while three were against and nine were undecided. It is very significant that "Euthanasia and assisted suicide were not desired as ends in themselves," the authors write. "None of the participants, including the most adamant supporters, desired euthanasia or assisted suicide outside of the circumstances that led to their perception of loss of self."

Dr. Lavery divided patients' concerns into two categories. One was fear of physical disintegration. Many of them had cared for other AIDS patients at the end of their lives and were horrified at the physical helplessness and loss of control.

The other was loss of community, which the study defined as the inability to make and maintain close personal relationships. The result is a "loss of self," or the sense of their own dignity, which one study participant described in a recorded interview.

"You get to the point where there's no return.... I can understand somebody saying, well geez, I used to be somebody, but now...I'm no better than...a doll, somebody has to dress me and feed me and...I don't know how to explain it, really."

Another person explained, "I think it's very important for every single person to feel that they belong, and...that they fit in a community.... Once you perceive that...your relationships, all the links with...other living things have deteriorated...then you've lost face. Dignity, then, has for me, has an awful lot to do with face."

Although the study was of a homogenous group, Dr. Lavery writes that those with "chronic degenerative neurological disease and diseases affecting elderly or other socially marginalized populations" are also likely to experience loss of self.

Dr. Lavery's study sheds new light on the public debate on physician-assisted suicide and euthanasia. Current guidelines in Oregon and the Netherlands focus on how many months a person has left to live, the significance of pain, and other criteria. The only relationship that comes under any scrutiny is the one between the doctor and the patient.

"Our results also suggest that development of policies on euthanasia or assisted suicide mainly within the doctor-patient relationship might obscure the role of broader social influences," the authors conclude.

"Dr. Lavery's study emphasizes the importance of our relationships with people who are seriously ill or disabled," said David O 'Steen, Ph.D., executive director of the National Right to Life Committee. "It also reminds us to redouble our efforts to fight any attempt to devalue their lives through the legalization of physician-assisted suicide or euthanasia."