To Feed Or Not to Feed?

By Claudia Wallis.

John Jobes vividly remembers the day in 1971 when he first met his future wife Nancy. Both were high school students in Parsippany, N.J. "She was a very independent, headstrong, loving person," he recalls. They married a few years after graduation, when John was working as a machinist and Nancy as a lab technician. Then six years ago, while she was pregnant with their first child, Nancy was injured in a traffic accident; several bones were broken, and the baby was lost. "She was a real tiger and a real fighter," John recalls, but her struggle to recover ended abruptly during surgery to remove the fetus. Oxygen was inadvertently cut off, causing irreversible brain damage. Nancy Jobes has been in a coma ever since, sustained by a feeding tube in a New Jersey nursing home. John, together with Nancy's parents and siblings, wants to have the feeding tube removed, but faces a battery of legal and medical obstacles. "There is no quality of life," he insists. "Nancy would not want to be in this state."

There are about 10,000 other Americans in Nancy Jobes' predicament, a hopeless twilight known to doctors as a "permanent vegetative state." For their families, they are a constant source of anguish, and there is a tremendous financial burden (as much as $100,000 a year, usually paid by insurance). These patients pose a knotty ethical dilemma for doctors as well --a conflict between the duty to sustain life and the obligation to relieve suffering. With few professional guidelines to help them resolve the conflict, doctors have frequently decided to continue treatment because of their moral qualms or fear of legal consequences.

Now a bold new ruling by the American Medical Association's Council on Ethical and Judicial Affairs ought to make it easier for doctors to go along with a family's request to end treatment. After two years of deliberation, the seven-member panel affirmed that patients' wishes, as best as can be determined, should be respected and their "dignity" maintained. It is "not unethical," said the council, for doctors to discontinue all life support for patients who are in irreversible comas, "even if death is not imminent." In its most controversial provision, the council included food and water on the list of treatments that could be withheld. The council's decision reflects a growing concern in the medical community and society at large that death in America is too often controlled by machines rather than nature. In a sharp departure from the past, when most Americans died at home, an estimated 80% now die in hospitals or nursing homes, often surrounded by a thicket of tubes and life-extending apparatus. Public opinion surveys suggest that most Americans fear and oppose this invasion of one of life's most private moments. Last year a Louis Harris poll of 1,254 adults found that 85% thought a terminally ill patient "ought to be able to tell his doctor to let him die"; 82% supported the idea of withdrawing feeding tubes, if that was the patient's wish.

The issue of stopping food and water nonetheless remains one of the most agonizing that doctors face. Thanks in part to the precedent established by the Karen Ann Quinlan case ten years ago, it is no longer unusual to shut off a respirator or discontinue kidney dialysis for terminally ill or comatose patients. Food is another matter. "Most people equate hydration and feeding with nurture and caring," observes Dr. Russel Patterson, president of the American Association of Neurological Surgeons and a member of the A.M.A. judicial council. This equation is entirely natural, argues Patterson, but not for the comatose patient with "no question of regaining the essence of being human." Dr. Nancy Dickey, who chaired the council, concurs: "We're not talking about going into Granny's room and taking away her water pitcher." Granny benefits from such care, says Dickey, a family practitioner in Richmond, Texas, but "the comatose patient derives no comfort, no improvement, no hope of improvement." Both doctors hasten to point out that physicians who disagree with this view are free to follow their conscience. The council opinion is in no way binding.

The A.M.A. decision was hailed by many advocacy groups last week as an important step in preserving the right to die with dignity. After "a period when technology was used indiscriminately, this returns us to common-sense medicine," declared A.J. Levinson, executive director of Concern for Dying in New York City. But there were bitter objections as well. "Deciding to begin selective starvation is a decision no civilization should make," said Philosophy Professor Patrick Derr of Clark University in Worcester, Mass. And dehydration, critics noted, can be a gruesome way to die (though just how much a comatose patient feels is not known).

Some raised concerns about the so-called slippery slope toward wholesale euthanasia. Said Dr. Mark Siegler, director of the Center of Clinical Medical Ethics at the University of Chicago: "We start off with dispatching the terminally ill and the hopelessly comatose, and then perhaps our guidelines might be extended to the severely senile, the very old and decrepit and maybe even young, profoundly retarded children." Adding to such worries is the current era of medical cost cutting. "That's what this is all about, to get rid of people who are a burden to their families and the state," warned St. Louis Pediatrician Anne Bannon, president of Doctors for Life.

With debate still vibrant, the practical impact of the A.M.A. decision is likely to be mixed. Doctors will no doubt feel more comfortable about acting quietly with family approval to hasten the dying process. The family of a patient like Nancy Jobes, whose plight is more public, will be able to make a stronger argument but may still face a legal battle; the Jobes' request to remove the feeding tube goes to court this week. However helpful, the A.M.A.'s new ruling cannot ease the heartbreak for families weighing such a decision. It is one thing to shut off a machine that is forcing the breath of life into inert lungs. It is emotionally far harder to withdraw the staff of life, even if it is dripping through a tube.

With reporting by J. Madeleine Nash/Chicago and Wayne Svoboda/New York