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VA, OHSU, OHA Researchers Study Experiences of Hospice Nurses

   Portland, Ore.

In the July 24 edition of the New England Journal of Medicine, Oregon researchers report on the first study to document hospice nurse experiences with terminally ill patients who deliberately refuse food and water to hasten their deaths.

On the basis of reports by hospice nurses, the researchers found that patients in hospice care who stopped eating and drinking were elderly, no longer found meaning in living and usually died a "good" death within two weeks after stopping food and fluids. "Voluntary refusal of food and fluids occurs often enough that it must become part of our dialogue on end-of-life issues facing care providers, terminally ill patients and their families," said Linda Ganzini, M.D., M.P.H., director of the Palliative Care Fellowship at the Portland Veterans Affairs Medical Center and professor of psychiatry in the Oregon Health & Science University (OHSU) School of Medicine.

As they interviewed physicians about their experiences with patients who request assisted suicide under the Oregon Death With Dignity Act (NEJM, Feb., 24, 2000), the researchers had become aware that some patients were choosing to hasten death by refusing food and water. "The idea to stop eating and drinking was not coming from the physicians," Ganzini said. "In fact, physicians worried about the choice and were surprised when patients had a very peaceful death and didn't suffer from hunger and thirst."

Ganzini, Ann Jackson, M.B.A., director of the Oregon Hospice Association (OHA), and their colleagues subsequently sent a questionnaire to all nurses employed by hospice programs in Oregon and analyzed the results. Of 429 eligible nurses, 307 (72 percent) returned the survey and 102 of these reported that in the previous four years they had cared for a patient who deliberately hastened death by refusing food and fluids.

Nurses reported that these patients were ready to die, saw continued existence as pointless, and considered their quality of life poor. The survey showed that 85 percent of patients died within 15 days after stopping food and fluids. On a scale from 0 (a very bad death) to 9 (a very good death), the median score for the quality of these deaths was 8, as rated by the nurses. "We were surprised that patients who chose this means to hasten death were, according to their nurses, more peaceful and suffered less in the last two weeks before death than patients who choose assisted suicide," Ganzini said.

Several other findings were surprising, she added. In a state in which assisted suicide is legal, there were almost twice as many reports of terminally ill patients who pursued voluntary refusal of food and drink, compared with those who chose assisted suicide. "Also, the majority of patients who started down this road never turned back," Ganzini noted. Only a few patients abandoned their plan because of thirst or family pressure.

Compared with 55 patients who died by physician-assisted suicide, the 102 patients choosing to hasten death by refusing food and fluid were, on average, a full decade older (74 vs. 64 years of age) and were less likely to be evaluated by a mental health professional (9 percent vs. 45 percent). They were more likely to have a terminal neurological condition, although most people in both groups had cancer. Both groups expressed similar overall reasons for hastening death, but patients refusing food were less likely to want to control the circumstances of their death. The Oregon researchers had recently reported that controlling circumstances of death was a major motivation for patients who sought assisted suicide (Journal of Palliative Medicine, June 2003).

Ganzini said more research is needed to answer questions such as whether the Oregon experience can be generalized to other states and how best to care for patients who want to hasten death by refusing food and fluids. "The important message to take away from our study is that a number of hospice patients are making this choice," she stressed, "and that this simply must be part of the discussion as we seek to improve palliative care and better understand the needs of patients approaching the end of life."

Ganzini and Jackson's co-authors include Elizabeth R. Goy, Ph.D.; Lois L. Miller, R.N., Ph.D.;Theresa A. Harvath, R.N., Ph.D.; and Molly A. Delorit, B.A. Their work was supported by a grant from the Greenwall Foundation.

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