Researchers study experiences of hospice nurses with patients who hasten
death
http://www.eurekalert.org/pub_releases/2003-07/ohs-o072103.php

VA, OHSU, OHA researchers study experiences of hospice nurses with
patients who hasten death by refusing food and water
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."
--
Kathrynne Holden, MS, RD
"Ask the Parkinson Dietitian"  http://www.parkinson.org/
"Eat well, stay well with Parkinson's disease"
"Parkinson's disease: Guidelines for Medical Nutrition Therapy"
http://www.nutritionucanlivewith.com/

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