Medical Quandary : Bioethics Seeks Rules for Dying

The woman was 33 weeks pregnant when the family obstetrician first had difficulty picking up the heartbeat of her fetus.

The physician referred her to an ultrasound specialist, who discovered what one doctor later said “can only be described as a monstrosity in utero, totally incompatible with life.”

But it was alive.

So began an agonizing debate among doctors and the family, one that graphically illustrates the murky nature of medical ethics today. Sophisticated technical advances in health care, combined with spiraling costs, changing morals and conflicting legal rulings, have left physicians, theologians, philosophers and families grappling with increasingly complicated decisions about keeping patients alive.

Caesarean Necessary

A Caesarean delivery was necessary because the mother’s health was in jeopardy. If done immediately, there would be less physical and psychological trauma to the woman, but the baby would essentially be doomed because of immature lungs. Delaying delivery would give the lungs of the fetus a chance to mature but would increase the potential risk to the woman and would bring a badly deformed baby into the world.

LeRoy Walters, director of the Center for Bioethics at Washington’s renowned Kennedy Institute, was summoned to consult with a Georgetown University Medical Center team that included a cardiologist, neurosurgeon, general pediatrics surgeon, neonatologist, ultrasound specialist, several obstetricians, the family physician and the head neonatology nurse.

Family Chose Compromise

After four hours of discussion stretched over two meetings, the group of experts voted--and split evenly over whether to deliver now or wait for the lungs to mature. The final decision was then left to the family.

“I told the family that, if a group as well intentioned and qualified as this one spent hours and came out with a split decision, they morally could choose either course,” Walters said. “Maybe there are times, I told them, when there’s more than one right answer.”

The family eventually chose a compromise, waiting two weeks before going ahead with delivery. The deformed infant survived only briefly.

As can be seen from the extended deliberations at Georgetown, not all bioethical decisions are being made quickly or without foundation.

But, as also can be seen from the Georgetown case, the experts often find themselves wrestling with conflicting choices that yield no clear answers. They concede that the decisions in many gray areas of medical ethics finally come down to personal value judgments and fear of litigation. Partly for that reason, an increasing number of decisions are left to patients and their families whenever possible. “Autonomy” has become the guiding catchword in medicine.

“Everyone is confused,” said Dr. Willard Gaylin, president of the Hastings Center, a highly respected bioethics think tank north of New York City. “No one is quite sure what the rules are. Doctors get into trouble when one virtue conflicts with another virtue. People of good will can come down on opposite sides. We are still in the stage of consciousness-raising.”

Even so, the field of bioethics in recent years has been drawing ever-increasing attention and consideration. Position papers, personal essays and suggested guidelines regularly appear from Kennedy and Hastings, the two most prominent centers dealing with the question. Task forces and individual experts in theology, philosophy, medicine and law examine issues and reach tentative conclusions using everything from case studies to the writings of Plato, Aristotle, Thomas Aquinas and Immanuel Kant. The annual “Bibliography of Bioethics” edited by Walters carries 2,000 new articles every year.

Hospital Ethics Panels

Before going out of business in 1983, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research issued a multivolume report after more than three years of study. A small but growing number of hospitals are forming ethics committees. Many medical schools now offer courses in ethics, and at a few they are part of the required curriculum. Moral philosophers specializing in applied medical ethics make up a growing academic field.

Those trying to set a standard of medical ethics discourage the image of moral gurus.

Albert R. Jonsen, professor of ethics in medicine at the University of California, San Francisco, School of Medicine and one of the pioneers in the bioethics field, said: “What we do is consider, look at all the elements--the feeling of the general public, the law, economics, what doctors are actually doing. We blend it all together. Blend is the wrong word, though, because we keep the various strands distinct. We lay out for doctors choices and meanings. If you do this, you are following general consensus. If you do that, you’re more on your own.”

But the consensus does not hold still.

Where only a few years ago treatment automatically continued until the heart and lungs stopped, brain death is now uniformly accepted as the point where plugs should be pulled. Where doctors unthinkingly practiced paternalistic medicine, neither explaining nor asking patients about treatment, “informed consent” of the patient has become a guiding principle.

It is generally agreed, even if not always practiced, that competent patients have the right to ask not to be resuscitated if they suffer a medical crisis or lose consciousness. There is recognition of a category of patients who are “dying,” whether it be within the day or the year, and an awareness that such patients may require palliative rather than rehabilitative or corrective treatment.

New Issues Arise

So the central debates in medical ethics have moved to new issues, those which still carry with them far more confusion than consensus. Among the most important: Do artificial feeding and hydration through tubes constitute extraordinary care, much like respirators? How can it be determined when a patient is competent to make treatment decisions? How should limited resources be allocated and lines drawn based on cost? How should defective infants be treated?

Recent well-publicized cases that raised these issues include the Baby Fae baboon heart transplant, Barney Clark’s and William J. Schroeder’s artificial hearts and William F. Bartling’s legal effort to disconnect his artificial life support system at Glendale Adventist Medical Center.

Two teams of prominent physicians last year published articles in the New England Journal of Medicine and the monthly Hastings Center Report arguing that with some patients in the terminal phase of an irreversible illness, in a persistent vegetative state or severely and irreversibly demented, it is morally justifiable to withhold antibiotics and artificial nutrition and hydration administered by vein or gastric tube.

Few Withhold Treatment

Few doctors actually follow such guidelines, however. Arthur Caplan, a Hastings philosopher, estimates that only 5% of doctors would agree to withhold fluids and food and only 15% to 20% would stop antibiotics.

The courts have confused the issue further by delivering conflicting judgments. In one key test, in which a guardian asked that a nasogastric tube be removed from Claire Conroy, 83, a victim of organic brain syndrome and diabetes, a trial judge agreed, but an appeals court reversed that decision, and the case is now before the New Jersey Supreme Court.

In the case of Bartling, who was suffering from five potentially fatal diseases, a Los Angeles Superior Court denied him the right to order doctors to disconnect his respirator. But, after Bartling died, an appellate court Dec. 27 overturned that decision, significantly expanding the right of terminally ill patients to reject medical treatment and protecting doctors in such cases from criminal and civil liability.

Determining patient competency also remains a quagmire.

‘Whole Group in Middle’

“We know what to do if the patient is obviously competent or comatose,” Caplan said. “But there’s a whole group in the middle--retarded children, elderly who want surgery on Tuesday but don’t on Thursday. Some may not know what day it is or the President’s name, but they know for sure they don’t want a machine. In my rounds, I see those who I just sense are competent on their own cases. It’s variable, contextual. There’s a ton of problems and gray areas here.”

Neonatology is another of the most highly disputed areas in bioethics.

“Late-term abortions, fetal surgery, there’s no consensus,” Caplan said. “I give a talk, the room divides, lots of screaming. Half the submissions to the Hastings Report are on this topic, and they’re all over the map. Kill ‘em, save ‘em. I get huge responses to everything I write on this.”

Finally, many in the bioethics community say that drawing lines where treatment should end, based on cost and allocation of limited resources, represents the paramount unresolved issue in an era of high technology and a contracting economy. Under scrutiny is everything from artificial hearts and organ transplants to kidney dialysis and all the paraphernalia of intensive care wards.

Hastings director Daniel Callahan said: “The debate is so new and complicated, it’s not clear what moral principles are involved, let alone the solutions. We know we must be fair and just, but that’s not going to help. There are no cultural traditions to look at. We didn’t have artificial hearts in the past. In my case, I go to the literature and study what other societies did in the past in allocating non-medical resources. But we’re on uncertain grounds. We’re talking here not of doctors pulling the plug, but of legislators, who must vote where to put the money, benefits and plans.”

Certain decisions are already made indirectly, even if they go unexamined.

“What state or hospital you are in can determine whether you live or die,” said Tom Beauchamp, a professor at the Kennedy Institute. “Seattle had dialysis before anywhere else, so kidney treatment for a time was limited to those in the state of Washington. There are hundreds of such decisions made like that. It happens all the time.”

The bioethicists would prefer that the government act more directly. William Winslade, associate professor at the Institute of Medical Humanities at the University of Texas, Galveston, said: “When you have men trapped in a coal mine, you go all out. But the government must decide how much to put into overall mine safety. In the same way, they must make medical policy decisions because, once a patient is in the hospital, he must be treated. We are not yet dealing with this. Politicians like (Gov. Richard D.) Lamm in Colorado who try to talk about it get blasted. Instead, we end up being arbitrary and emotional.”

Consensus Among Elite

Bioethics appears even more nascent when the experts point out that what consensus they do reach usually involves only an elite community of scholars, many connected to Hastings, Kennedy or the presidential commission.

“What we agree upon is by no means the same as what’s felt out in the general medical community,” Callahan said. “Only some of our writings filter through. My general impression is that people who make actual decisions base it on religion if they have a strong faith, or else they grab a principle from the current culture that they can use for their purposes. This is rarely preceded by systematic thinking.”

The bioethical community tends to believe that its efforts will influence future doctors more than current ones. Kennedy’s Center for Bioethics offers a graduate program leading to a doctorate in bioethics. About 80% of the country’s medical schools now offer medical ethics courses, most designed not to provide a package of guidelines but to train physicians in how to identify and reason through issues. But, at only a few schools, including Georgetown and UC San Francisco, are these courses required in the curriculum.

Where the evolving field of bioethics most often does touch the practicing physician today is in the growing use of bioethical consultants, who often find themselves side by side with doctors, grappling with the complexities of individual cases.

Consultation Service

Walters at the Kennedy Institute, who has a doctorate in theology with a specialty in ethics, often receives calls from the Georgetown medical center concerning cases such as the one involving the late-term deformed fetus. Jonsen gets two or three calls a week in San Francisco. Winslade--a lawyer, philosopher and Freudian psychoanalyst who was co-director of the now-defunct UCLA Program in Medicine, Law and Human Values--went so far as to operate a legal-ethical consultation service, which aided the Neuropsychiatric Institute at UCLA, among others.

Like the scholarly theorists, the case consultants mainly narrow options, identify issues and suggest ways to think through complex questions.

For example, Walters and the team considering the late-term deformed baby at Georgetown did eliminate some options, including letting the pregnancy go to full term or aborting it in utero.

The decisions finally made in many cases are not always those the consultant would choose.

Down’s Syndrome Baby

For example, a baby was born in a Los Angeles hospital with Down’s syndrome and a gap in its intestine that could be solved by a standard, low-risk surgical procedure.

“The doctor called me to ask if he had a right not to treat this baby,” Winslade said. “I told him the law was unclear and he had a choice. If he formed his decision based on the baby’s best interests, he might go one way. If he formed his decision based on cost and expense to society, he might come out with a different conclusion.

“My personal opinion was that Down’s syndrome is a handicap that could be lived with. But the utilitarian cost basis was also a valid consideration. This doctor finally decided that, if the parents were going to take the baby home and care for it, he would operate, but, if they were going to put it in a home, then he wouldn’t. He ended up letting the baby die because the family didn’t intend to take it.”

At times, Winslade finds two of his own fundamental principles in conflict.

A 79-year-old woman with severe Parkinson’s disease, living in a nursing home, wanted pills to kill herself. “She was a proud lady who had been in the center of society when younger, and now was incontinent and had no control of her body. Her doctor wouldn’t give her the pills but respected her autonomy, so called me.

“She had three adult children and a husband. There were psychological and legal aspects to worry about. I met her, then called a second meeting at my office and talked for two hours with the kids, the doctor and her. I explained the law against facilitating suicide. But I also explained the practical unlikelihood of prosecution. My own view was I didn’t think she should be helped to kill herself. But there was her autonomy to consider, which I think is of high importance. So I just laid out the issues and concerns.

“Three days later, she checked out of the nursing home. When I inquired, I was told she had died.”

Even as they relate these stories, the consultants caution that the majority of decisions are not in the end truly shaped by ethical theory and moral guidelines.

Legal considerations and the pressure of public opinion, particularly, influence more decisions than ethics. Caplan at Hastings, echoing the observations of several colleagues, said: “It is my experience that, whenever I give a lecture on ethics, the first question I’m asked is, ‘Can I be sued?’ I would agree that in more cases decisions are based on legal rather than ethical considerations.”

Winslade was recently called in as a consultant in a case in which such forces controlled an entire hospital’s course of action.

Because of a uterine rupture, a birth occurred in which the baby had been cut off from oxygen and exposed to a wave of blood. It was in a coma but was not brain dead. The infant was rushed to neonatal intensive care and kept alive artificially by a respirator and dialysis.

“This baby was going nowhere. But it was the only child of Catholic parents and, because of the rupture, they could have no more children,” Winslade said. “The parents wanted to continue full treatment. The county was paying the full cost, $2,000 a day. The hospital wanted to stop, seeing it as a waste of time, money and resources. But the parents were Mexican illegal aliens, so the hospital was afraid of being seen as racist and they feared being sued.

“I was called in and met with the staff, who wanted to know what they could do. How much authority do the parents have? I tried to educate the staff on the ethical issues, that there was nothing wrong with ending treatment. But everyone agreed it was the political and legal issues that affected them. I said I understood their reluctance.”

The baby had been hooked to the machine for more than four months when Winslade left Los Angeles for Galveston and lost track of the case.

Theory and principles also fail at times simply because they cannot be applied to the complex, multi-shaded ambiguities found in most hospital wards.

Winslade cites the case of a man he chooses to call Mr. Jones as one that embodied most of the elements that make decisions so difficult: The doctors’ prognoses and attitudes varied widely, the family was in conflict, the patient ambivalent, the hospital both fearful of a lawsuit and uncertain about the patient’s competency.

Jones, a 67-year-old victim of Lou Gehrig’s disease, a degenerative disease of the nerve cells, requested after being fully dependant on a respirator for a year that the machine be disconnected. Because his illness is unpredictable in its course and difficult to diagnose, there was considerable medical disagreement about Jones’ actual condition. Jones could stabilize at any time or degenerate slowly, or very quickly.

A psychiatrist who was called in found Jones mentally competent but emotionally ambivalent about his request to have the respirator turned off. When one staff doctor, on hearing the request, reached out for the plug, inquiring, “Right now?” Jones quickly answered, “No, not right now.”

Meanwhile, Jones’ wife and two sons were themselves divided and unsure. The wife, very religious, opposed the request. One son supported his father, the other agreed with his mother. And the hospital staff feared that Mrs. Jones would sue them if they disconnected the respirator.

The decision finally had to be made in a courtroom. Jones filed suit to force the hospital to discontinue respirator care. He won. But, before the decision could be announced, Jones suffered a heart attack, slipped into a coma and was declared brain dead.