Study: Terminally Ill Refuse Food, Drink
Jul. 23, 2003
A surprising number of terminally ill hospice patients choose to speed their deaths by refusing food and drink, a study in Oregon suggests.
In fact, the survey of hospice nurses found that patients pick this means of ending life _ which is legal everywhere in the United States _ twice as often as physician-assisted suicide, which is legal only in Oregon.
The study further found that these patients are not depressed and typically die tranquilly, within two weeks.
The patients said they were ready to die, their quality of life was poor or they were afraid it would become so, and they saw no point in going on. They also wanted to die at home _ where nearly all hospice care is given _ and control the circumstances of their death, the nurses reported.
Nearly three-quarters of Oregon's 429 hospice nurses returned the survey. One-third of those who did said at least one of their patients had deliberately hastened death by stopping food and fluids during the previous four years.
That was only a tiny fraction of the 10,000-plus people who die under hospice care each year in Oregon. But Dr. Linda Ganzini, who directed the study, said the figure at first seemed too high to believe.
``I went back to my research assistant and said, `Can we check this? Can we have these codes right?''' said Ganzini, who works at Oregon Health and Science University and the Portland Veterans Affairs Medical Center, and is on the board of the American Hospice Association
After all, when she went through the medical journals, she found only three case studies about patients who had made this choice. A fourth report, from St. Christopher's Hospice in England, said that only two patients had done so in 30 years.
As striking as the numbers themselves is the fact that the nurses rated the overall quality of those deaths as ``8'' on a scale in which zero was ``very bad'' and 9 was ``very good.'' Three-quarters of those scores were 7 or above, according to the study in Thursday's New England Journal of Medicine.
In all, 102 of the 307 nurses who answered her survey had worked with patients who ended their lives this way. At least 16 other patients stopped eating and drinking but later resumed doing so.
Over the same four years, 55 other terminally ill patients had used Oregon's assisted suicide law to get their doctors to prescribe a lethal dose of narcotics.
Other hospice professionals said that although having patients decide to refuse food and drink is far from an everyday occurrence, they found Ganzini's results completely believable.
Dr. William Lamer of Malibu, Calif., medical consultant to Hospice Foundation of America, estimated that he had treated 50 such patients over 30 years of hospice practice.
``It is not an uncommon thing for people to talk about it _ not uncommon for them to say, `I'm not hungry. I don't want to eat any more, I just want to go,'' Lamer said.
Lamer, also a psychiatrist, said these people are clearly not depressed: ``They're just saying, in a very reasonable way, `I've lived a full life, I know what's happening, I don't see any reason in extending it.'''
Carla Braveman, a registered nurse, executive director of the Visiting Nurse Alliance/Hospice Association in Northampton, Mass., and a board member of the National Association for Home Care and Hospice, said she has dealt with two such patients in the past 10 years.
One such patient, she recalled, said, ``I'm really just ready to go now. I really don't want to eat anymore. Is that OK?''
As death approaches, patients need less and less food and drink, and may want only a bite or two a day at the end. Eating can become a chore, and some patients may decide to stop eating and drinking without telling their nurses or family, Lamer said.
On the Net:
Hospice Association of America: http://www.nahc.org/HAA/home.html
International Association for Hospice & Palliative Care: http://www.hospicecare.com