Studies Cite Concerns of Terminally Ill
A majority of terminally ill patients believe 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 today’s Journal of the American Medical Assn.
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 said at 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 that 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 aren’t aware of 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.
How to care for dying people, to ease their pain and try for the most peaceful death, is a growing concern. Nearly 80% of Americans die in hospitals or nursing homes, very often bedridden, incontinent and in pain. Yet very few write “advance directives” about whether or not they want heroic lifesaving measures, and most “do not resuscitate” orders and moves to hospices are made just before death.
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% 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% of patients discussed the option with doctors, and 2.5% hoarded painkillers in case they decided to try suicide.
Of the 256 deaths during Emanuel’s study, one patient died in a 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.
