Dying patients refusing food
More terminally ill people in Oregon hasten death by choosing to starve than by doctor-assisted suicide, a new study finds
“This story has not been told. It’s like a big puzzle, and now we have one piece. But this is a group of patients we still know very little about.”
Twice as many terminally ill patients in Oregon hasten their death by refusing food and drink as by doctor-assisted suicide, a study of hospice nurses suggests.
“I was stunned by the sheer numbers,” said Dr. Linda Ganzini, who led a research team from Oregon Health & Science University, the Portland Veterans Affairs Medical Center and Oregon Hospice Association.
One in three hospice nurses reported having cared for a patient who deliberately hastened death by refusing food and fluids. In all, they recalled at least 102 deaths from 1997 to 2001 compared with 55 doctor-assisted suicide deaths.
Most of those patients died within 15 days, and nurses rated 92 percent of the deaths “good”: meaning the patient died tranquilly. Their average age was 74, and a majority lived in rural areas or small towns.
Compared with patients who died by doctor-assisted suicide, those who stopped eating and drinking suffered less and were more at peace in the last two weeks of life, nurses said. But the overall quality of the deaths in both groups ranked “good.”
The study, reported in today’s New England Journal of Medicine, offers the first detailed look — through the eyes of their nurses — at patients who refuse food and fluids near death.
Researchers said refusal of food and drink may be a more significant, though less studied, phenomenon than doctor-assisted suicide, which remains controversial among the medical profession and the public. The Bush administration has gone to court — so far, unsuccessfully — to challenge Oregon’s Death With Dignity Act.
Oregon is the only state in which physician-assisted suicide is legal. The law, which took effect more than five years ago, allows doctors to prescribe a lethal dose of barbiturates to a terminally ill adult of sound mind who requests it in writing and meets other requirements. So far, 129 Oregonians have died under the law.
One reason that refusal of food and fluids is more common than assisted suicide may be that it does not require a doctor’s prescription or anyone’s permission. Some patients and hospices also may find it more ethically acceptable. The legal right of patients to refuse medical treatment, including feeding, is unquestioned.
The most commonly cited reasons for a patient’s refusal to eat or drink include a readiness to die and an inability to find meaning in life. Pain, nausea, depression and a lack of social support were rarely cited. The pattern is similar to that of patients who die by doctor-assisted suicide.
The study defines refusal of food and fluids as “action by a patient . . . with the primary intention of hastening death.” That does not include stopping because of lack of appetite or inability to eat or drink.
“This wasn’t just a choice to stop a burdensome treatment, such as an intravenous tube,” Ganzini said.
“This story has not been told,” said Dr. Susan Tolle, director of OHSU’s Center for Ethics in Health Care. “It’s like a big puzzle, and now we have one piece. But this is a group of patients we still know very little about.”
Tolle said the study raises more questions than it answers, partly because it relies on the recollection of nurses, rather than direct observation of patients.
Just as the debate over doctor-assisted suicide has helped improve end-of-life care, Tolle said, more detailed information about patients who refuse to eat and drink could help families and caregivers find better ways to help them in their dying days.
She hopes follow-up research will pinpoint how these patients differ from other dying patients and, specifically, those who choose assisted suicide, how eating affects very sick patients, how families respond and what role depression plays in their choice.
It’s not uncommon for very sick people to stop eating for a variety of reasons, from loss of appetite to fear of choking and inability to swallow. But even when it does not involve the intent to hasten death, a patient’s refusal to eat can be troubling to loved ones, nurses and doctors.
“It’s hard on families, and it’s hard on caregivers,” said Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania. “Food is so symbolic of how you help someone.”
Doctors and nurses are reluctant to broach the option of refusing food and fluids for fear they might encourage vulnerable patients to end their lives prematurely.
“These findings show how important it is to put this option on the table without somehow subtly coercing a patient into thinking we don’t think their life is worth living any longer,” said Ann Jackson, executive director of the Oregon Hospice Association and a study co-author.
For some, she said, the study will raise the question of whether doctor-assisted suicide is necessary. The hospice association does not endorse assisted suicide, but hospices do not turn away patients who choose that option. Some prohibit their staff from being present at such a suicide.
“We never want anyone to use physician-assisted suicide for a reason that could be fixed another way,” Jackson said.
None of the nurses in the study said they would actively oppose a patient’s choice to stop eating and drinking.
The finding that nurses rated most of the deaths hastened by refusal of food and drink as “good” or “very good” surprised some researchers.
“That’s very good news,” said Dr. Linda Emanuel, director of the Buehler Center on Aging at Northwestern University Medical School and leader of the American Medical Association’s effort to educate doctors about end-of-life care.
Forgoing food and fluids in order to let nature take its course at the very end of life “is absolutely not the same thing as suicide” ‚Äì assisted or otherwise, Emanuel said.
She described the controversy over doctor-assisted suicide as a “misplaced and distracting debate from the real issue of providing people with a comfortable, meaningful and dignified experience at the end of their lives.”
Don Colburn: 503-294-5124; firstname.lastname@example.org