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At life's end, control ranks above comfort

Ganzini — — — — That's according to patients who choose physician-assisted suicide under Oregon's law

Research published today in a national medical journal suggests terminally ill Oregonians who choose physician-assisted suicide have a stronger desire than many dying people to take control over end-of-life decisions.

Contrary to concerns expressed by some in the medical community, terminally ill patients ranked depression, lack of social support and fear of being a financial drain on family members as least important factors in the decision.

In the Aug. 22 edition of the New England Journal of Medicine, Oregon researchers report on the first study to document experiences of hospice nurses and social workers with patients who request physician-assisted suicide under Oregon's Death with Dignity Act.

Hospice caregivers ranked a patient's desire to remain in control as very important in the decision to request physician-assisted suicide, said study leader Dr. Linda Ganzini, director of the Palliative Care Fellowship at the Portland Veterans Administration Medical Center and professor of psychiatry in the Oregon Health and Science University School of Medicine.

Ganzini said end-of-life care traditionally has focused on providing pain relief and keeping the patient comfortable, but there's a small group of people for whom being in control is more important than comfort at the end of life.

Patients make the choice to request assisted suicide because they want to control the timing and manner of their death, she said. It's surprising how we found so little variation with regard to this characteristic, almost as if the nurses and social workers were all seeing the same patient. The clear message is that we need to study what control means to people who are dying.

Fewer than 100 people have ended their lives with a lethal prescription since assisted suicide became an option, but 45 percent of 306 nurses and 91 social workers surveyed for the study had cared for someone who requested a lethal prescription. Thirty percent had cared for a client who received one.

Ganzini said the study's findings may point the way to new approaches in end-of-life care as researchers gain a better understanding of factors that might allow terminally ill patients to feel that they can retain control of the dying process without resorting to assisted suicide.

We haven't explored and articulated how people can feel in control at the end of life, she said.

My personal belief is we need to have more than (physician-assisted suicide) to address the problem of feeling in control at the end of life.

Ganzini and five other researchers queried caregivers who spend the greatest amount of time with dying hospice patients ' nurses and social workers. Of the 545 caregivers who received questionnaires, 306 nurses (71 percent) and 91 social workers (78 percent) responded to the survey.

The researchers found that 179 respondents had cared for a patient who requested assisted suicide since November 1997. The nurses reported on 82 patients who had received prescriptions for lethal medications, including 55 who actually died by assisted suicide.

In addition to the patients' desire to control circumstances of death, the caregivers reported that important reasons for requesting assistance with suicide were a desire to maintain independence, poor quality of life and readiness to die.

Ganzini said not all the nurses and social workers supported the Death with Dignity Act, but all were willing to care for patients who chose assisted suicide. They're really willing to go the distance with these patients even though (assisted suicide) is a choice they don't approve.

Among other survey findings, 98 percent of the hospice nurses had discussed a patient's assisted-suicide request with a co-worker; 77 percent of the requests had been presented at a hospice interdisciplinary conference on patient care; and 61 percent of hospice patients who requested assisted suicide had been visited by a social worker.

Ganzini said having patients enrolled in hospice adds an additional safeguard to the assisted-suicide procedure by providing additional opportunities to find alternatives short of suicide. Nurses and social workers can assess whether patients have adequate decision-making capacity and aren't acting impulsively ' two critical safeguards in the law.

Physician-assisted suicide accounts for fewer than 10 of every 10,000 deaths in Oregon. Ganzini said the high quality of end-of-life care in hospice programs may in part explain the very low rate of assisted suicide among terminally ill patients in Oregon.

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