Intensive Care: Medical Ethics and the Medical Profession.

A FEW GENERATIONS AGO it wasn't as tounding to be born, live an en tire lifetime and finally die all in the same house. Today, in the United States, that life story is vanishingly rare. Most babies are born in hospitals. Few people die at home unless they insist on doing so. Those whose deaths are not mercifully sudden are likely to spend their last hours in what health workers call "intensive care." With machines that can keep the heart beating, the lungs functioning and the kidneys eliminating wastes, almost any death can be postponed. The actual timing has become as much a decision of doctors as it is the much-quoted "act of God."

This circumstance has had an impact on everyone--doctors, patients, families, "activists" of all descriptions and the press. The names Karen Quinlan and Nancy Cruzan should be enough to remind reporters that we all have a professional interest in these things. Not only are they important, they have a tendency to become big stories. As a personal matter, everyone will have a direct interest sooner or later even though most of us prefer to keep that inevitable truth out of mind.

Robert Zussman, associate professor of sociology at State University of New York, Stony Brook, has made an important addition to public understanding of this highly personal and emotional issue. He set out to see how the praiseworthy tenets of medical ethics match the life and death realities of intensive care. The short answer is: they don't.

Intensive care units (ICUs) are special centers within hospitals where doctors and nurses do everything humanly--and technologically possible to keep patients from slipping over the final edge. Intensive care units save lives and offer powerful reassurance for patients and families. When the heart stops beating it can be re-started. When breathing stops, that too can be restored. But the ICU is also a frightening place where the patient may be transformed from a person to a problem in biology, where many linger unconscious and near death and where even those who are more alert can,t speak and can hardly communicate at all because of sedation and the tubes and equipment that are keeping them from dying. It is not the layman's intuitive notion of compassionate health care.

There is compassion in the midst of defibrillators, respirators, dialysis machines and intravenous fluids. But, the focus is urgently simple--keep the patient alive.

One of the reasons for the book is the development of the concept of patients, rights and the emergence of medical ethics as what the author calls a social movement. He says the modern shape of these concepts has emerged within the last few decades. Lawyers and medical ethicists have increasingly become players in the dramas that end life. Patients have rights, according to the unarguable present-day ethical and legal credo, and doctors must respect those rights. Major treatments should be administered or withheld only with the informed consent of the patient. Decisions to continue or end life-prolonging measures should reflect the patient's wishes. Medical ethics should have an important place in all medical decisions. Health care is a contract between provider and recipient.

Intensive care, where life and death decisions are made hourly, would seem to be particularly in need of ethical guidelines and insistence that patients are told what they need to know. This is certainly the place where informed consent is most vital to the contract. But that's where theory slams into reality. Patients are not taken to intensive care units unless life and death are at issue. No such patient and few families could absorb details of treatment at such a stage even if there was time for the explanations.

"Most patients in intensive care, as I have taken pains to argue, cannot participate in decisions surrounding their own care by virtue of the very conditions that brought them to the unit," said Mr. Zussman.

He quotes one staff doctor in an urban hospital as saying "I don't think informed consent exists in an intensive care unit."

"What's addressed in the unit is how fast they're bleeding and where they,re bleeding from," said another.

"As a specifically legal doctrine, informed consent presupposes a model of decision making that has little to do with the realities of medical care," said Mr. Zussman.

The book is a report of his research on intensive care over several years. While many studies of medical ethics have been impersonal and theoretical, his approach was to observe the way medical care is actually given. The studies involved first hand observations and interviews in an intensive care unit in the Boston metropolitan area and another in the Bronx. Each unit is in a hospital linked to a major medical school. The author gives them fictitious names: Countryside Hospital in Boston and Outerboro in New York. At first this is annoying. The author gives copious details and one would like to know which real hospitals and which medical schools are involved. But as the narrative unfolds, the tactic becomes more understandable. Use of pseudonyms for hospitals, patients, doctors and nurses frees the author to quote real thoughts and emotions without caveats and fear of damaging anyone's career.

The author attended daily "rounds" at which doctors described their cases at the bedside.

Mr. Zussman does not emphasize either heroes or villains; there appear to be too many of the former, too few of the latter. Nor does he hit the reader over the head with glib total solutions to the serious problems he reveals. Instead, he paints a disturbing picture of reality. The detailed quotes and case descriptions from his sources are fascinating. The reader takes away a glimpse of highly skilled, hardworking and conscientious health care professionals who are often tortured by the impossible bind between saving lives, minimizing patients, agonies and allowing the dying to go peacefully.

Among doctors and nurses of the two ICU's, the author says, one concern dominates all others: that intensive care units are filled with too many patients who are certain to die and the deaths are too long and agonizing. Part of the dilemma arises from the fact that a patient's true prospects aren't obvious until a few hours or days have passed in the unit.

The author's statistics show that this problem of treating many who are hopeless, while real enough, involves a smaller number of patients than the doctors themselves imagine. Many intensive care patients do survive and are discharged both from the unit and the hospital. Nonetheless, the author de scribed the professionals, concern as deeply personal and highly principled. He also said their concern expresses two of the central issues in contemporary medical ethics: the best allocation of scarce resources and the question of what circumstances, if any, make it acceptable to withhold or withdraw treatment. Into this already agonizing set of choices, medical ethicists and hospital lawyers sometimes pile additional agony by requiring even more treatment for even more time.

Dying and incurable patients are often kept alive only by machines. The author quotes a nurse as saying some of them actually begin to "rot" before treatment is withdrawn.

"...We have one guy who had no blood flow from the neck up, so his brain was gone. He stayed in that bed for two and a half months with a heart beat... We were watching things fall off," she said. "Fingernails were falling off.

Much-publicized cases like that of Karen Quinlan and Nancy Cruzan make it seem that doctors are the ones who most often resist withdrawing treatment. Karen Quinlan, a 23-year-old New Jersey woman stayed in a deep coma. Eventually her parents decided it was time to turn off the respirator that was keeping her comatose body alive. The hospital's doctors refused and the went all the way to the Supreme Court of New Jersey in 1976 before permission was granted.

The case of Nancy Cruzan, a Missouri woman, was similar in some respects. She survived for years, unconscious and in a vegetative state, after an automobile accident in 1983 when she was 25 years old. The case went all the way to the U.S. Supreme Court in 1990 after the parents sought to halt the artificial infusions of nutrients and fluids that were keeping her alive. The court ruled against them and upheld the Missouri courts, insistence that "clear and convincing evidence" of the patient, s wishes had to be produced before the life-prolonging measures could be halted. It is hard to believe that many 25-year-old women dwell enough on the prospect of death to leave any such record of their wishes.

These cases, and many others, have given the impression that doctors usually fight to continue treatment beyond all reason. The author said his experience is just the opposite--the doctors are those most likely to put limitations on extraordinary treatments when it becomes clear that the patient has no hope at all. "Physicians most often use their discretion -- albeit with some occasional exceptions -- to limit treatment. This is in itself a major finding of the research reported here," the author said.

But Mr. Zussman made it clear that health professionals make these moves with reluctance, many self-doubts and a great deal of anguish over every such decision. Furthermore, the decisions are seldom sharp turns in the course of treatment.

"Few decisions to limit treatment are discrete events," he said. "They are, rather, the result of an incremental process consisting of many smaller decisions that often sneak up, almost imperceptibly, on doctors and patients alike."

Law and the tenets of medical ethics require doctors to present these decisions as though they had been discrete events, thus distorting the true nature of the process.

A reader approaching the book with a layman's viewpoint, has to give ethicists and lawyers low marks. They often saddle an immensely difficult process with abstractions and artificial concerns . But, the author noted with approval, that today's climate of opinion has made doctors much more willing, even determined, than in the past to inform patients about their medical status. An example was a study in the Journal of the American Medical Association showing that in 1961 some 88 percent of doctors seldom even told their patients directly that the diagnosis was cancer, while in 1979, 98 percent almost always gave such diagnoses frankly.

Altogether, the book contains much food for unsettling thought. It will be valuable to the debate over medical care that is sure to grow more heated in years just ahead.

Harold Schmeck, Nieman Fellow 1954, is a retired science reporter for The New York Times.