CHICAGO - Doctors are often oblivious to the last wishes of terminally ill patients, many of whom die in pain, tethered against their will to life-prolonging equipment, a study found.
The $28 million study, believed to be the largest ever done on the dying, also found that living wills and other strategies aimed at promoting patients' wishes made no difference.
"We need to recognize that when someone dies after a prolonged time on a breathing machine, in an intensive-care unit or in a coma, that's a bad outcome," said Dr. William A. Knaus, a critical-care specialist at the University of Virginia Medical School, who co-directed the research.
The study's findings were published today in the Journal of the American Medical Association. The research was financed by the Robert Wood Johnson Foundation of Princeton, N.J.
The study was conducted in two parts. In the second phase, 4,800 seriously ill patients were monitored from 1991 to 1994. Half were provided specially trained nurses to promote discussions between doctors and patients regarding care. The doctors were given information on the patients' wishes.
"It didn't work," Knaus said.
Doctors who were helped had no better understanding of dying patients' preferences than those who weren't. And in the helped group, dying patients spent just as many days in intensive care, in comas or on breathing machines.
Society as a whole - not just doctors - needs to take a more creative, forceful approach toward end-of-life decision making, Knaus said. "We're going to have to develop a better vision for living well while dying."
The first part of the study tracked 4,300 seriously ill patients from 1989 to 1991. Almost half the patients, who had diseases ranging from congestive heart failure to lung cancer, died within six months.
Interviews with patients, families and doctors showed that 31 percent of patients didn't want to be resuscitated, but fewer than half of their doctors knew those wishes.
Half the patients who died were in moderate or severe pain during their last three days, and 38 percent spent more than 10 days in intensive care.
When do-not-resuscitate orders existed, they were written within two days of death in almost half of the cases.
"Physicians are acknowledging that patients are dying, but only at the last moment," Knaus said.
But physicians weren't the only ones to blame. A third of the patients and families didn't want to talk about end-of-life issues.
The report didn't analyze the role of living wills, but about one-fourth of patients had them and they didn't make any difference, said study co-leader Dr. Joanne Lynn, director of the Center to Improve Care of the Dying at George Washington University.
Most living wills are too vague to be useful, as are the advance medical directives used in the Medicare program, said a co-author, Dr. William J. Fulkerson, director of critical-care medicine at Duke University Medical Center.
The study was conducted at five hospitals from Boston to Los Angeles. ----------------------------------------------------------------- Help with dying
Here are organizations that offer guidance on end-of-life choices:
-- Choice in Dying Inc. New York City: 800-989-WILL.
-- California Health Decisions. 505 S. Main St., Suite 400, Orange, Calif., 92668-4585. $5.39 for a durable power-of-attorney kit.
-- Legal Counsel for the Elderly. American Assn. of Retired Persons. P.O. Box 96474, Washington, D.C., 90090-6474. $5 for a guidebook on advance medical directives. Los Angeles Times