Public Release: 

Study Documents Attitudes About Assisted Suicide Among Patients With Lou Gehrig's Disease

Oregon Health & Science University

First Study To Document Oregon Patients' Attitudes About Physician-Assisted Suicide

(Portland, OR) -- Research being published in the October 1 edition of the New England Journal of Medicine provides the first scientific documentation of an Oregon patient group's attitudes towards physician-assisted suicide. Between 1995 and 1997 researchers interviewed 100 patients with amyotrophic lateral sclerosis (Lou Gehrig's disease), a neuromuscular disease that causes gradual paralysis, respiratory failure and death, usually within three to five years after diagnosis. The research also explored caregiver attitudes about assisted suicide.

The majority (56 percent) of the patients interviewed said they would consider assisted suicide. Forty-four of the 56 agreed with the statement, "If physician-assisted suicide were legal, I would request a lethal prescription from a physician." (note: The research was completed before the defeat of Measure 51 in November, 1997, which allowed Oregon's Death With Dignity Act to take effect).

While A.L.S. gradually robs patients of neuromuscular function, many patients do not experience intense physical pain. "For many of these patients, interest in assisted suicide was not associated with current suffering but fears of future suffering," said Linda Ganzini, M.D., associate professor of psychiatry at OHSU, director of geriatric psychiatry at the Portland Veterans Affairs Medical Center and lead author of the study. Of the 44 patients who said they would request a lethal prescription, 36 said they would "probably keep the prescription available to potentially use in the future."

"Perhaps the more interesting result is that neither disease duration, depression, nor self-reported levels of disability, pain and suffering differed significantly between the group that would consider assisted suicide and those who would not," said Wendy Johnston, M.D., director of the A.L.S. clinic in OHSU's Department of Neurology and a co-author of the study. "Whereas hopelessness about the future and a lower quality of life were correlated with a desire to hasten death. So how an individual is dealing with A.L.S. seems more important than the physical impact of the disease."

"For many of these patients, there's a gap between wanting a lethal prescription available and actually wanting to end one's life," said Ganzini. "That's where health care personnel need to step in and find out what the patient's request really means. There could be ways to help these patients focus more on the present and less on future fears and the worst outcomes."

The study also probed family caregivers' attitudes about assisted suicide. In 73 percent of cases, caregivers and patients had the same attitude on the subject. Caring for a patient with A.L.S. required a significant commitment of time and energy. Support ranged from providing assistance with shopping to helping the patient bathe and use the toilet. Thirty-seven percent of caregivers lost income because of caregiving: 23 percent reported their social lives suffered frequently: 20 percent said they frequently did not have enough time for themselves: 33 percent said they frequently felt stressed because of caring for the patient. Nearly a quarter of caregivers were clinically depressed. None of these factors was associated with the caregiver's attitude towards assisted suicide. Patients and families with strong religious beliefs and frequent religious practices were much less likely to consider assisted suicide than those who were less religious.

"What emerges from this study is that A.L.S. patient attitudes about assisted suicide are related to both who they are and how they are dealing with the disease," said Johnston. "With physician-assisted suicide a reality in Oregon we think more of this kind of work is necessary to help health care providers understand what prompts someone to ask for a lethal prescription."

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