Terminal Care: Too Painful, Too Prolonged

Article excerpt

Hazel Welch was 93, 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. "I 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 last week's journal of the American Medical Association, suggest that despite two decades of right-to-the 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."

Needless pain; 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 recluested do-not-resuscitate orders actually got them, and 70 percent 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. …