Terminal Care: Too Painful, Too Prolonged

Hazel welch was 92, severely disabled and living in a Connecticut nursing home when a perforated stomach ulcer landed her in the emergency room at Yale-New Haven Hospital. The physician on call, Dr. Sherwin Nuland, proposed emergency surgery to repair her exploded digestive tract. To his surprise, she refused, explaining that she had already outlived her friends and relatives, and that 92 years on this planet was quite long enough anyway. Her odds of surviving the operation were just one in three, but as Nuland recounts in his 1993 book, "How We Die," the need to intervene seemed obvious. So he pressured her, she gave in and he operated. She survived for a few pain-filled weeks, then died of a massive stroke. "Although my intentions were only to serve. . . her welfare, I was guilty of the worst sort of paternalism," Nuland reflects. "l had won out over [the ulcer] but lost the greater battle of humane care."

Hazel Welch died in 1978, but as a disturbing new study makes clear, American medicine has yet to grasp the meaning of her story. Under a $28 million grant from the Robert Wood Johnson Foundation, researchers recently monitored the care given some 9,000 critically ill patients at five major medical centers. Their findings, published in last week's Journal of the American Medical Association, suggest that despite two decades of right-to-die activism,' vast numbers of Americans continue to die in intensive-care units, alone and in pain, after days or weeks of futile treatment-even if they have living wills. Moreover, the researchers discovered that a huge, well-organized effort to prevent needless care made no difference. "We thought we knew how to solve the problem," says Dr. William Knaus of the University of Virginia Health Sciences Center, who headed the study, "but the system doesn't know when to stop."

The study, known as SUPPORT, was carried out in two phases. In the first, chronicling the care given 4,300 critically ill patients, the researchers found a dearth of doctor-patient communication, an excess of aggressive treatment and a lot of needlessly prolonged pain. Only 49 percent of the patients who requested do-not-resuscitate orders actually got them, and 70 percept were never asked their preferences. Nearly 40 percent of the patients who died spent at least 10 days in an intensive-care unit, kept alive by machines. And half of those who were conscious spent at least half of their final hospital stay in pain.

For the second phase, Knaus and his colleagues assembled 4,800 critically ill patients and placed half in a program to foster more humane end-of-life care. Specially trained nurses were assigned to help patients and families translate their preferences into advance directives. The hospital doctors got daily reports detailing patients' wishes and assessing their: chances for recovery. Yet, to the researchers' dismay, patients from the two groups were equally likely to have their advance directives ignored, to spend their last days in intensive care and to die in pain.

Why did such an ambitious experiment fail so miserably? For one thing, SUPPORT assumed that patients know in advance what they want, and that anyone given good information will make rational choices about dying. But a crisis can change everything. "When I discuss [intensive care] with patients in advance," says Dr. Russell Phillips of Boston's Beth Israel Hospital, "they say they don't want it ff the quality of life is bad. But what we think of as poor quality of life doesn't seem so bad ff that's all you have left."

Sometimes patients don't change their minds, but the press of circumstance leads to advance directives' being ignored. When someone stops breathing, for example, there isn't always time for consultation between specialist and primary-care physician. Even when there's time for contemplation, doctors can disagree. Jane Becker of Arlington, Mass., recalls dealing with a small army of surgeons and residents, an internist and an intensive-care physician when trying to decide whether to withdrawer dying mother's life support. "I wanted everyone in the same room, having one conversation," she says. Instead she got specialists pulling her aside to offer their own views. "I had an overwhelming sense of trying to get around a big machine," she says. "There was no place to jump in and say, 'Wait, I don't want that'."

The larger problem, most analysts agree, is that American medicine lacks any conception of death as a part of life. Insurance policies rarely cover hospice or home care, so dying patients end up in hospitals, surrounded by nurses who talk of miracles and doctors who are hellbent on performing them. In his reflection on Hazel Welch, Nuland notes that even if he'd been wise enough to honor her death wish, peer pressure would have forced him to intervene. "I would have had to defend the result at the weekly surgical conference (where it would certainly be seen as my decision, not hers)."

To help wean physicians from their warrior mentality, the American Medical Association has established a Task Force on Quality Care at the End of Life. Somehow, says Dr. Thomas Reardon, who chairs the AMA task force, doctors must learn to "sit down and say, 'There's nothing more I can do, but I'll be here to see you through'." But Knaus, the study director, doubts that's enough. Patients' preferences should be recorded as routinely as their blood types, he says -- and checked just as carefully by anyone contemplating a heroic procedure. "Blood matching isn't voluntary," he says. "This shouldn't be either." That may sound blunt, but as the new findings make clear, every one of us is currently at risk of dying on someone else's terms.

There are few fail-safe measures to avoid unwanted care and pain at the end of life. Still, you can:

Make a living will (even though doctors don't always consult them.)

Give someone power of attorney and make sure they know your wishes.

Tell doctors your requests--from "Do not resuscitate" to "Do everything possible" in specific circumstances.

Get specifics about procedures, consequences and terms like "functional memory" or "impaired mobility."

If you want to die at home, talk it over with your family and doctor.

Check to see if your insurance plan covers home and hospice care.