Study cites patients' need for control, may point to advances in end-of-life care
Although assisted suicide is rare in Oregon, 45 percent of 306 nurses and 91 social workers surveyed for the study had cared for a patient who requested a lethal prescription, and 30 percent had cared for a client who received one.
The hospice caregivers ranked a patient's desire to remain in control as very important in the decision to request physician-assisted suicide. Contrary to concerns expressed by some in the medical community, the caregivers ranked depression, lack of social support and fear of being a financial drain on family members as least important factors in the decision, said study leader Linda Ganzini, M.D., director of the Palliative Care Fellowship at the Portland VA Medical Center and professor of psychiatry in the Oregon Health & Science University School of Medicine.
"Patients make the choice to request assisted suicide because they want to control the timing and manner of their death," said Ganzini. "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."
The study's findings may point the way to new approaches in end-of-life care, she pointed out, as researchers gain a better understanding of factors that might allow terminally ill patients to feel that they retain control of the dying process without turning to assisted suicide.
Ganzini and her colleagues had previously reported that Oregon physicians were responding in a careful and prudent manner when patients requested assisted suicide (NEJM, Feb. 24, 2000) and that Oregon physicians had made a priority of improving their ability to care for dying patients since the 1997 enactment of the Oregon Death with Dignity Act (JAMA, May 9, 2001).
In their new study, the research team focused on caregivers who spend the greatest amount of time with dying hospice patients - nurses and social workers. Of the 91 Oregonians who died by assisted suicide, Ganzini pointed out, 78 percent were enrolled in hospice programs. She and her colleagues mailed a questionnaire to nurses and social workers at all 50 Medicare-certified hospices in the state. Of the 545 caregivers who received questionnaires, 306 nurses (71 percent) and 91 social workers (78 percent) completed them.
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 desire of these patients 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. Not all the nurses and social workers surveyed supported the Death with Dignity Act, but all were willing to care for patients who chose assisted suicide.
Among other survey findings, 98 percent of the hospice nurses had discussed the 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 requesting assisted suicide had been seen by a social worker. "We concluded that having patients enrolled in hospice adds to existing safeguards by increasing opportunities to find alternatives, and ensuring that patients have adequate decision-making capacity, aren't depressed and aren't acting impulsively," Ganzini said. "The high quality of end-of-life care provided by these programs may in part explain the very low rate of assisted suicide among terminally ill patients in Oregon."
The VAMC and OHSU researchers plan further studies to better understand what control means to dying patients and to develop interventions that might strengthen that sense of control.
In addition to Ganzini, OHSU/VAMC authors of the NEJM report include: Theresa A. Harvath, R.N., Ph.D.; Elizabeth R. Goy, Ph.D.; Lois L. Miller, Ph.D., R.N.; and Molly A. Delorit, B.A. Ann Jackson, M.B.A., executive director of the Oregon Hospice Association, is also a co-author.