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WEDNESDAY, July 23, 2003 (HealthDayNews) -- A small number of elderly adults in hospices are choosing to hasten their death by refusing food and water.
These patients are, on average, a decade older than patients who choose physician-assisted suicide, but many of their reasons for choosing an earlier end are the same.
"These patients [who refused food and water] were mostly making choices because they didn't want to lose their independence and they felt their quality of life was poor and were having difficulty finding meaning in life," says Dr. Linda Ganzini, a professor of psychiatry at Oregon Health Sciences University and director of palliative care training at the Portland Veterans Administration.
Ganzini is the lead author of the first study to document the experiences of hospice nurses with patients who refuse food and water in order to die. The report appears in the July 24 issue of the New England Journal of Medicine.
The researchers became aware of this phenomenon as they interviewed 35 Oregon physicians about physician-assisted suicide. Seven of those physicians volunteered that they knew patients who had opted to stop eating and drinking to speed up their death.
Ganzini was struck by the revelations. "As far as we could tell, prior to this, there were only three case reports in the literature and there had been views from British hospices saying that this was almost unheard of in Great Britain," she says. "This is still a rare event, but it's certainly a more common event than we had anticipated."
"This is really very rare," emphasizes Stephen Connor, vice president for research, development and finance at the National Hospice and Palliative Care Organization. "I've been in the field 25 years, and I only can remember one case in the hospice programs that I've worked with."
Connor also stresses that stopping eating and drinking when you're 80 years old is a vastly different affair than when you're young and robust.
"It's normal for people to diminish intake as death approaches," he says. "I really wonder in my mind how much longer these people would have lived if they had continued eating and drinking."
The decision to stop eating and drinking does not have to involve a physician and is legal.
"In 1994, a Hospice Patients Bill of Rights was created by hospices and the Hospice Association of America which includes the right of patients 'to refuse services and to be advised of the consequences of refusing care,'" says Janet Neigh, executive director of the Hospice Association of America.
After hearing of the doctors' experiences, Ganzini and her colleagues decided to distribute questionnaires to all nurses who worked at hospice programs in the state of Oregon. Of 429 eligible nurses, 307 (72 percent) returned the survey and 102 reported on patients who had died in the past four years as a result of giving up food and fluids. This is almost twice the number of patients (55) who have undergone physician-assisted suicide.
According to the surveys, 47 percent of the patients had a life expectancy of more than one month, 45 percent of one week to one month, and 6 percent of less than one week. Eighty-five percent of patients who gave up food and water died within 15 days of that decision.
Their deaths were, by and large, peaceful ones. The median score for the quality of these deaths as rated by the nurses was eight, with 0 being a "very bad death" and nine a "very good death."
"We imagine stopping food and hydration as causing a great deal of suffering," Ganzini says. But this was not the case.
Also surprising was the fact that most patients came up with the idea on their own, without prompting from health-care providers. In addition, few people tried and then stopped.
"I was surprised at the number of patients, once they set off on this path, they didn't look back. There were only a small number of patients who tried to do this and stopped," Ganzini says.
Compared to those who underwent physician-assisted suicide, individuals who voluntarily gave up food and fluids were more likely to have a terminal neurological condition (though the majority had cancer) and were less concerned about controlling their death.
In an accompanying article in the same issue of the journal, several doctors recall patients who had chosen to die in this manner. One elderly patient with debilitating arthritis who did not qualify for physician-assisted suicide in Oregon died a week after she stopped eating and drinking. Her family spent the last week of her life gathered around her bedside, reminiscing.
Another elderly patient, this one with diabetes, chose to stop eating, drinking and taking insulin. She died peacefully after 10 days.
Perhaps most tragic was the story of a 43-year-old woman in Utah who had amyotrophic lateral sclerosis, or Lou Gehrig's disease. It's a rapidly progressive, fatal neurological disease that attacks the nerve cells that govern voluntary muscles.
Four months after being diagnosed, the woman could neither bathe nor dress herself and medication was doing little to ease her pain. She tried fasting twice, but both times resumed eating. She then spent several months preparing two decades' worth of birthday presents and letters for her daughter, then 6 years old. The woman tried fasting again for a third time, and succeeded. She died on the 16th day.
"We didn't discuss this before because it was unheard of," Ganzini says. "Now it appears it's happening and if it's going to be happening we need to talk about what are the appropriate standards for evaluating the decision, why are they making the decisions, what do they need to be offered as alternatives."
More information
For more on end-of-life issues, visit the Hemlock Society, the National Hospice and Palliative Care Organization or Oregon Death With Dignity.
