Treating The Terminally Ill

Time after time, Peter Clark heard parents at Georgetown University Hospital beg doctors to save the lives of their dying children.

And throughout the neonatal intensive care unit, he heard doctors promise to try. Even if it meant cramming tubes down the children's throats, cutting open their chests or bombarding their frail bodies with radiation. Even when they knew the treatments couldn't save them, and would only fill their final days with pain.

"Some of the parents were waiting for a miracle. How do you deal with that?" said Clark, a Jesuit priest and professor at Saint Joseph's University in Philadelphia. "In some cases, you have to give the family a little more time. But where do you draw the line?"

Clark spent a year observing medical ethics at the Washington, D.C. hospital. The dilemma he witnessed occurs daily in hospitals nationwide, and a growing number have crafted policies allowing doctors to cease aggressive treatments of terminally ill patients, even when relatives want them to keep fighting.

Within a year, the Hospital of the University of Pennsylvania plans to adopt ethics guidelines under which doctors could decline to admit patients to an intensive care unit if they have been in a persistent vegetative state for at least three to six months.

In such cases, the hospital would continue to offer care to ease a patients' pain, but wouldn't take invasive steps like putting the patient on a breathing machine or performing surgery, said Dr. Horace DeLisser, who co-chairs the ethics committee implementing the guidelines.

"There are certain types of injuries people suffer where one should acknowledge the tragedy that has occurred, and realize that the chances of recovery are negligible, and really redirect care toward making sure the person is as comfortable as possible," DeLisser said.

But some advocates and religious groups have argued that only patients themselves are qualified to decide whether doctors should try to save them.

Stephen Gold, a Philadelphia lawyer who represents people with disabilities, said hospitals might be tempted to cut off expensive care to people who lack health insurance or are handicapped.

"It is a slippery slope they are going down," he said. "If we have a way to provide a medical treatment for people that will keep them alive, we should always provide it, unless they have a living will saying we shouldn't."

Hospitals, however, have pressed ahead. The American Medical Association recommended in 1997 that all hospitals develop a "medical futility" policy allowing for an end to aggressive lifesaving measures if doctors determine a patient cannot be cured.

Since then, most hospitals have developed some sort of guidelines, said Amy Lee, a spokeswoman for the American Hospital Association.

"But there isn't a lot of uniformity, and the standards tend to vary from region to region," she said.

Mercy Health System, which operates three community hospitals near Philadelphia, drafted guidelines two years ago that are becoming typical of hospitals nationwide.

Doctors are authorized to stop aggressive treatment for a patient against a family's wishes, but only after a lengthy appeals process. Relatives can ask for a second opinion, appeal to an ethics panel, and then file a second appeal with an interdisciplinary panel.

So far, the policy has only been invoked twice, said Clark, who serves as an ethics adviser to the hospital system. In both cases, the families initially appealed, but later changed their minds.

"We want the family to be involved in the decision," Clark said. "It's about how to balance the patient's autonomy, while protecting a physician's integrity."

Both doctors and patients report, however, that fights over end-of-life decisions often go unresolved.

Courts have struggled with the issue as well.

In the landmark 1994 "Baby K" case, the 4th U.S. Circuit Court of Appeals ruled that a Virginia hospital must provide artificial resuscitation for a child with anencephaly, a rare malformation in which almost all the brain is missing at birth.

Scientists believe children with anencephaly are incapable of thought or emotion and doctors almost universally advise parents to withhold life support. Baby K's mother insisted, over the objection of doctors, that her child be kept alive. With the court-mandated breathing assistance, the child lived for 2 1/2 years.

"Not everyone agrees on what constitutes a life worth living," said Gold. "I had a client with cerebral palsy once who was asked to sign a (Do Not Resuscitate) order when they went in to be treated for appendicitis," he said.

By David B. Caruso