Study finds deathly ill want euthanasia option

WASHINGTON – A majority of terminally ill patients say the options of euthanasia and physician-assisted suicide should be available to Americans but very few would consider such choices themselves, says one of a series of major new studies on how we die.

When it comes to improving end-of-life care, “euthanasia and physician-assisted suicide are largely irrelevant,” concluded Dr. Ezekiel Emanuel of the National Institutes of Health, who led the first study to track terminally ill patients’ opinions on the subject over a number of months.

In fact, dying Americans have priorities – such as spending final time with loved ones and preparing for death – far more important than euthanasia, say studies published in Wednesday’s Journal of the American Medical Association.

But “a collusion of silence” in which doctors and patients don’t discuss impending death means that too often people don’t have time to prepare, Dr. Timothy Quill of the University of Rochester told a news conference on the findings.

Consider how one doctor struggled to tell a longtime lung-disease patient that he had only a few months left:

“It was the unacknowledged elephant in the room,” the physician, identified only as Dr. G., told Quill. “Every day I worried that he’d come in with pneumonia by ambulance in the middle of the night and I wouldn’t hear until the morning that he’d been intubated. … I knew this was not what he wanted so I needed to get it settled.”

That patient, “Mr. B,” told Quill well before his doctor made her comments that he didn’t want breathing machines, yet Mr. B hesitated to ask if he was dying. It was weeks before doctor and patient finally got Mr. B’s treatment wishes recorded.

For children, it can be even longer: One study found parents realized, on average, 106 days before their child’s death that cancer would claim him or her – while their doctors knew 100 days before that. It wasn’t clear if parental denial or doctors’ reluctance to break the news was to blame.

And many doctors don’t realize other elements that dying patients list as most important to their last days, such as being mentally aware at the end, not being a burden on family, and coming to peace with God, another study found.

“Have the courage to have these discussions” before it’s too late, Quill advised.

How to care for dying people, to ease their pain and try for the most peaceful death, is a growing concern. Nearly 80 percent of Americans die in hospitals or nursing homes, very often bedridden, incontinent and in pain. Yet very few write “advance directives” outlining if they want heroic lifesaving measures, and most “do not resuscitate” orders and moves to hospices are made just before death.

Such grim statistics fuel public debate over physician-assisted suicide. Polls suggest that between 60 and 70 percent of Americans feel terminally ill people in pain should be able to end their lives, with a doctor’s help if needed. Oregon is the only state where physician-assisted suicide is legal; 43 people have used the law to die since it passed in 1997. Maine voters rejected a similar law last week.

To see how the terminally ill really feel about suicide, Emanuel tracked 988 dying cancer patients for six months. Sixty percent said euthanasia or physician-assisted suicide should be an available option.

But initially, only 10.6 percent admitted considering it for themselves. Two to six months later, half of those people had abandoned the idea. Another 29 people who hadn’t initially considered ending their lives had started considering it.

Only 1.6 percent of patients discussed the option with doctors, and 2.5 percent hoarded painkillers in case they decided to try suicide.

Of the 256 deaths during Emanuel’s study, one patient died from physician-assisted suicide. Another tried to kill himself but failed. A third repeatedly asked her family and doctor for help in dying, but they refused and she ultimately died at home.

The surprise, Emanuel said: Pain wasn’t the biggest influence on who considered suicide – depression and feeling burdensome to family were the biggest factors.

Obviously anyone nearing death is sad, but full-scale depression needs treatment to improve the quality of remaining life, Emanuel stressed.

Better communication – among doctors, patients and caregivers alike – is also crucial, he added, citing a patient who considered suicide because she felt she was too big a burden on her husband. “He was just heartbroken” when Emanuel revealed his wife’s fear. “What could be more important for him than caring for his wife of 50 years?”