Study: Patients stop taking food to hasten death.

Byline: Tim Christie The Register-Guard

Nearly twice as many Oregon hospice patients ended their lives by refusing to eat or drink as those who chose doctor-assisted suicide, a study released Wednesday shows.

The findings, published in the New England Journal of Medicine, were based on a survey asking hospice nurses across the state to report anonymously on patients who had stopped taking food or fluids to hasten death or who participated in the state's ground-breaking assisted-suicide law.

The study "begins to shed light on a practice that before now we did not have much information on," Dr. Linda Ganzini, the article's lead author, said in an interview.

Ganzini, a psychiatry professor at Oregon Health & Science University in Portland and director of the Palliative Care Fellowship at the Portland Veterans Affairs Medical Center, said she was surprised when she compiled the survey and hesitant to report her findings.

"I was worried about thousands of elderly, depressed people going on hunger strikes," she told the journal editors. "And I'm worried that some physicians will too quickly offer this as an alternative when we don't know enough about it."

She said it's important that people don't generalize the findings beyond the group of patients studied: older, terminally ill people getting professional hospice care.

"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," she said. Palliative care, provided to terminally ill patients, is intended to reduce the severity of a disease or slow its progress, rather than providing a cure.

Ganzini got the idea to survey hospice nurses after interviewing doctors who had participated in Oregon's assisted suicide law, which took effect in 1998. Seven of the 35 doctors said they had patients who chose to give up food and drink to hasten their deaths after they were unable to obtain a lethal prescription.

"The idea to stop eating and drinking was not coming from the physicians," she 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."

So in 2001, she surveyed hospice nurses to find out how common the practice was in Oregon.

Of 429 hospice nurses, 307 returned questionnaires for a 72 percent response rate. The findings showed that 102 of the respondents, or one in three, reported they had cared for a patient in the previous four years who had deliberately hastened death by voluntarily refusing food and drink.

The survey found that 55 of the nurses said they'd cared for a patient who'd chosen physician-assisted suicide.

Either option represents a fraction of total deaths in Oregon - about one in 1,000 deaths for assisted suicide, about two in 1,000 deaths for giving up food and drink.

The nurses said patients who chose to quit eating and drinking did so because they were ready to die, saw continued existence as pointless and thought they had a poor quality of life.

The survey found that 85 percent died within 15 days. On a scale of 0 to 9 - with 0 being a "very bad death" and 9 "a very good death" - the median score for the quality of death as rated by the nurses was 8. However, 8 percent of patients had a relatively poor quality of death, nurses reported.

Elderly, terminally ill patients may not suffer after they stop eating and drinking because their bodies are already failing, Ganzini said.

"Among these very ill patients, their body doesn't fight it as much," she said. "If a young, healthy person were to do this, the suffering would be enormous."

The people who hastened their deaths by not eating or drinking tended to be older, with an average age of 74, were less likely to have cancer, were less likely to be evaluated by a mental health professional and more likely to have a terminal neurologic disease. The patients who chose assisted suicide had an average age of 64.

Both groups had similar reasons for hastening death, but those who chose assisted suicide placed more emphasis on controlling the time and manner of their death.

Those who quit eating and drinking weren't afraid of a painful death, said Ann Jackson, executive director of the Oregon Hospice Association.

"It's because they're done living," she said. "Their life is no longer worthwhile. They don't want to do it anymore."

Depression ranked 19th among 21 reasons for why patients refused food and drink. Yet 12 percent of nurses reported that their patients had a mental disorder such as depression that may have influenced their decision.

Ganzini said the findings are important especially in Oregon, where doctors and patients have grappled with assisted suicide and the doctor's role in hastening death.

"This suggests we've limited that discussion and there's another option that is legal and accessible and for which patients don't need physicians' permission that we should also be looking at," she said.

Still, some doctors are uncomfortable when a patient chooses to give up food and fluids, researchers said.

"The fact that it's been done so quietly I think means people are afraid to talk about it or doctors are afraid to talk about it," Jackson said. "We need to be more open and honest about end of life care and what the options are."

An editorial in the New England Journal of Medicine describes a patient who didn't qualify for assisted suicide so chose to give up food and drink. Her doctor was concerned, then surprised when his patient became "self-confident and seemingly happy." She spent a week with her family then died without any palliative care.

The physician, Dr. Peter Reagan of Portland, told the journal: "There was something a little uncomfortable about this for the hospice, for the family and for me. We felt complicit." Yet that was preferable to turning away, he said.

"The most important thing is to stay involved because that feels a lot better as a doctor," he said. "Saying, 'This is all I can do for your (disease)' is not nearly as satisfying as saying, 'What can I do for you and your family.' '

Dr. Susan Tolle, a medical ethicist at OHSU who studies end of life issues, said the study "was an important first step, but certainly a call for much more to be known."

More study, for instance, must come to understand the perspective of families and patients, she said. The perspective of hospice nurses "is important and useful but one piece of a very large puzzle."

Mark Newson, patient care manager at Hospice of Sacred Heart and a founder of Eugene-based Partners to Improve End of Life Care, said he's not surprised by the findings and hopes they get people to talk about end of life issues.

"This will open that door some," he said.

Ganzini predicted the study would create some controversy because "it opens up a whole new area that's been going on that we hadn't attended to."

"I think that every piece of knowledge we have about patients' preferences can only lead to better care," she said. "The biggest risk is of us not knowing what's going on."

TO LEARN MORE ABOUT END OF LIFE CARE

Oregon Hospice Association, [phone], oregonhospice.org

Partners to Improve End of Life Care, www.seriousillness.org/lane