KNOWING WHEN TO STOP

By LEON JAROFF

IN HOSPITALS ACROSS THE U.S., DOCTORS ignore, or are unaware of, the last wishes of dying patients, needlessly prolonging their pain and suffering. That is the disturbing conclusion of a massive study published last week in the Journal of the American Medical Association. "There is a tragic mismatch between the health care many seriously ill people want and what they get," says the University of Virginia's Dr. William Knaus, co-director of the study. "We don't know when or how to stop."

In the initial phase of the study, which was conducted with a $28 million grant from the Robert Wood Johnson Foundation, hundreds of doctors and nurses in five major teaching hospitals cooperated in observing 4,301 desperately ill patients. Among their findings:

While a third of the patients had asked not to be revived with cardiopulmonary resuscitation, half the time DO NOT RESUSCITATE was never written on their charts.

Nearly 40% of patients spent at least 10 days in intensive care, kept alive only by breathing machines.

Half the patients able to communicate in their last three days of life reported that they were in severe pain.

"We don't decide to let patients die in peace until almost the last moment," says George Washington University's Dr. Joanne Lynn, the study's co-director. "This is hard on patients, their families and the health professionals who care for them."

Convinced that the problem was caused largely by a lack of communication, the researchers launched the second phase of the study, involving 4,804 different terminally ill patients. This time half the group received traditional hospital care, while the others were monitored by specially trained nurses who consulted with patients and their families, forced them to confront the realities of dying and kept doctors informed about their patients' conditions and wishes.

"We were stunned to find that it didn't make a bit of difference," says Knaus. "The tools that experts thought would work didn't." The reasons, suggests Lynn, are ingrained in our society. "Physicians are taught to save lives, that death is failure," she says. "Patients and families have come to expect miracles in every case. No one wants to give up too soon."

They may have to, if health-care reform is to succeed. The U.S. currently spends around $62 billion of its total expenditure of $884 billion on intensive care; nearly 30% of all Medicare payments go to patients in their last year of life. What is needed to bring about change, some experts now suggest, is something more fundamental than improved communication: a hard look at a medical culture in which doctors have access to splendid life-saving technology and feel obligated both morally and legally to use it. "We have to recognize that there are alternatives to extending life hooked up to high-tech machines," concludes Knaus. "And we have to think creatively to help patients craft the best way for them to live their last days."

--Reported by Alice Park/New York

With reporting by Alice Park/New York