By Sarah Bryan Miller
She was homeless, her name unknown. She was brought into the University of Chicago Hospital’s emergency room with a large intracerebral hemorrhage, and her prognosis was very poor. Left untreated, such patients have a 90 percent chance of dying; with surgery the odds of survival are only about 50 percent, and the patient is likely to be permanently unconscious.
In such cases doctors usually turn to the patient’s family for a decision on whether to operate, but the hospital staff could find no one to say yes or no, not even a friend. In search of a neutral evaluation of the situation, the staff called the university’s MacLean Center for Clinical Medical Ethics.
“Left to their own inclinations, neurosurgeons would probably not operate in a case like this,” says Mark Siegler, the internist who’s headed the center since its founding in 1985. “We met with them and with the emergency-room people. We evaluated the patient, and we asked the neurosurgeons what most families choose when they’re making a decision in the best interests of a loved one. They told us that there’s no uniform decision, but that the majority go for neurosurgical intervention. We suggested to the neurosurgeons that they operate, since if there was a proxy available they would likely make that choice.”
The operation was a success, but when the patient awoke her responses to anystimuli were minimal. She died in a nursing facility some months later.
Most questions pondered by medical ethicists–of whom Siegler estimates there are about a thousand in the U.S.–aren’t headline grabbers, but they often deal with life-and-death matters. And for every much-publicized case in which an alcoholic baseball player gets a new liver or a family sues to take its comatose daughter off a ventilator, thousands of other cases are quietly concluded by doctors and families consulting with ethicists.
Medical ethics is a growth industry, with doctors and nurses making difficult judgment calls every day that would hardly have been an issue a generation ago. There’s the burn victim whose family and doctors disagree on whether treatment should be continued. There’s the mentally retarded man with a possible lung tumor who may or may not be competent to make his own decisions about his treatment. As medical technology allows scientists to nudge the boundaries between life and death, this uncomfortable field becomes increasingly important.
A native of New York City and an honors graduate of Princeton, Mark Siegler came to U. of C. for medical school in the early 60s and never left. At 55, he has a curriculum vitae that runs to 25 decidedly nonfluffy pages, including 14 pages listing books and articles he’s written or contributed to, among them Clinical Ethics, the standard text in the field for students and physicians.
In the early 70s Siegler was working in the university hospital’s intensive-care unit and teaching in the university’s medical department. “Questions were being raised by students about aspects of medicine–the end of life, informed consent–that didn’t have any easy answers,” he recalls. “It wasn’t in any of the books. The students were asking tough questions, and I couldn’t give them easy answers. So I set up a discussion group on ethics. I brought in philosophers and theologians from the divinity school here. The field was still outside the clinical arena.
“It was illuminating how little involvement there was from medical professionals in a very important emerging field. The work being done by ethicists wasn’t coming back to doctors–and the ethicists weren’t deriving the benefits from the [doctors] doing the studies. It struck me as a serious deficiency for both. I took it as my mission, my task, to try to bring together the two groups.”
In 1975 Siegler wrote his first published paper, “Pascal’s Wager and the Hanging of Crepe,” in which he described how the 17th-century scientist-philosopher Blaise Pascal had justified betting on the existence of God when he wrote, “If you gain, you gain all; if you lose, you lose nothing. Wager, then, without hesitation that He is.” Siegler compared this position to the common medical practice of “hanging crepe”: “A physician applies the strategy by informing the family that the acutely ill patient will almost certainly die of his illness, and that only an unexpected turn of events, possibly related to successful physician intervention, might, but only might, restore the scales to balance and preserve the patient’s life. The strategy, like that of Pascal’s wager, is designed to establish a “no-lose’ situation in which the interests of the patient, his family and the physician are rigorously protected, and in which adverse consequences are minimized.”
Siegler argued that both Pascal and the crepe hangers erred. “If God does not exist, and if one devotes all one’s belief and energy to a nonexistent Deity, one has surrendered without recompense or reward the uniquely human qualities of rationality and intellectual integrity. And thus one has lived a lifetime with a lie, in intellectual darkness, and if God does not exist, one has indeed lost a great deal.” He contended that the physician who engages in crepe hanging also surrenders his intellectual integrity, causes unnecessary stress for family and patient, and can have a negative effect on treatment. Doctors would do far better to offer information on average survival rates, to present “some mention of the extremes associated with any particular illness,” and to simply admit that they don’t know what the outcome will be.
For the next decade Siegler continued writing about these issues and continued his discussions with other ethicists around the country. It was clear to him that a center where the discussions could be pursued in depth was needed, and he led the drive for one. In July 1985 the MacLean Center–named for the family of its chief financial sponsors–opened with its first two fellows.
John Lantos, a pediatrician at La Rabida Children’s Hospital, was one of three fellows in 1986 and is now the center’s associate director. A native of western Pennsylvania, he’d come to Chicago after a two-year stint working in Tennessee with the National Health Service Corps. “Mark is a world historical figure,” he says. “He was one of the first physicians to recognize how important it was going to become for physicians to participate in the bioethics debate. He got in on the ground floor and created the particular angle of looking at bioethics from a physician’s perspective.”
The clinical view, Lantos explains, starts with the interaction between the individual patient and the individual physician at the bedside. “We find principles from that interaction. Theoretical ethics starts with principles–and tries to mold human behavior to fit them. In the 70s the theologians active in the debate had a clinical view; the philosophers and lawyers in it didn’t.” He believes that the theologians, like doctors, were used to thinking about specific cases, not about theories.
Today the MacLean Center–whose list of benefactors includes, among others, the Andrew W. Mellon Foundation, the Pew Charitable Trusts, the MacArthur Foundation, and the Harris Foundation–trains 14 fellows a year, mostly physicians, but also nurses, lawyers, philosophers, chaplains. The center’s staff and fellows work with medical students, do postgraduate training, and clinical research, are directly involved in patient care, and offer an ethics consultation service for professionals and patients. Twenty-five of those fellows now head ethics centers around the United States and Canada, and every year they have a reunion. “Everyone comes back, compares notes, and continues the discussion,” says Lantos.
From 1991 through 1993 U.S. News & World Report included medical-ethics programs–there are about a dozen large centers and many more small ones around the country–in its annual survey of colleges, and the center got the nod as number one. “The center is Mark’s creation,” says Lantos. “His energy sustains it against tremendous odds–against financial uncertainties and the institutional culture. Medical centers generally are into a sort of reductionist science. They’re either hostile or indifferent to the sorts of things we do, as a rule. Most ethics centers are inactive or outside the medical center. While we do have institutional support, our presence at the University of Chicago Hospital is unique. It’s a tribute to Mark’s energy, determination, and political savvy.”
Since the center opened, it’s been called in for more than 1,500 consultations at the University of Chicago Hospital alone. There’s a protocol for handling them: the center’s 12 fellows are on rotation, with two a month supervised by an “attending” from the ethics faculty, of whom there are now six. When a call comes in–“What’s an appropriate course of action for this case?”–Siegler makes sure that it’s not an emergency, then sends the fellows to the floor. “They talk to the patient, the family, the doctors, the nurses. Sometimes it takes six or eight hours to gather all the information.”
The facts known, the attending joins the fellows, and they reevaluate the patient, then make their suggestions to the doctors. At their regular Wednesday meetings the doctors who asked for the consultation are invited to join a discussion with the entire complement of fellows and perhaps the hospital’s attorneys and chaplain, for an interdisciplinary review meeting. Vigorous discussion often ensues, says Siegler.
“The fellowships provide a steady stream of inquiring students,” says Lantos. “It keeps us on our toes and thinking about new issues, reframing our own ideas as we try to teach. It becomes a focus for interdisciplinary collaboration around the university, involving law, divinity, sociology–we all meet around the ethics-center conference table and debate some of the big issues. And we’re located in the hospital, so that people are coming to us. Other ethics centers are more ivory tower: the doctors go to them. The case-consultation conference is the most vibrant weekly meeting I attend. It keeps you grounded. New issues come along all the time where a societal agreement hasn’t yet been made: AIDS, transplants, extremely premature babies, new techniques like genetic screening or Norplant for teenagers.”
Bernard Heilicser, director of emergency medical services for south Cook County, has been in emergency medicine for 20 years. He became a fellow three years ago and is now director of the medical-ethics program at Ingalls Memorial Hospital in Harvey. “I always loved the concept of medical ethics, and I felt something was lacking in its actual practice in the medical field. There are a lot of dilemmas we face in the emergency room, and they have to be decided now. When you’re working the floors you can have family conferences, and they can drag on for a day or two. You have time to talk about withholding or withdrawing treatment and about patient rights. But that’s not the case in emergency medicine.”
“I got a tremendous amount out of the program,” says Peter Angelos, who was also working on a doctorate in philosophy while he did his fellowship at the center; he’ll teach medical ethics to surgical residents and medical students as part of his duties at Northwestern Memorial Hospital this fall. “There aren’t a whole lot of places where you can get good clinical-ethics experience. The program is very much focused on direct patient care. Mark Siegler is a real believer in the medical model: the way that physicians request consultations from other physicians is the same way that they request consultations from the ethical center. That’s uncommon, but I think it’s the best way of doing it.”
“I often see ethical decisions in medicine as being represented by a kind of box,” says Siegler, an amazingly energetic and unfailingly cheerful man. “Within the boundaries of the box there may well be a number of reasonable decisions that can be made. There are decisions that fall outside the box that are wrong, unethical, unacceptable. There may once in a while be an absolute. Much more often there is a series of reasonable choices.
“We had it put on a T-shirt: “Ethics is easy–life is hard.’ It’s not hard to sit in a conference room and decide what you could have done or should have done. But when you take those theories and apply them to a real patient, a real family, real doctors, you recognize that theoretical resolutions of the matter may be very different from the way things happen in life.
“We had this put on a poster: “Medicine in itself is not inherently dangerous, but to an even greater degree than flying, it is unforgiving of any carelessness or neglect.’ That’s a rephrasing of a poster I once saw that showed a picture of an old airplane hanging from the branches of a tree. The ethicist is a problem solver, the negotiator of conflicts that arise with some frequency in the clinical arena.”
Siegler says the field is continually evolving because of new discoveries and new attitudes. “We know now that there is a gene that can identify women at a clear-cut risk for breast cancer, and there was an agreement [among geneticists] that the test for it would not be made available. Then an entrepreneurial group decided to go ahead and offer it to women who wanted it. The ethical question is one of whether this knowledge will be used appropriately, and whether it belongs in the hands of the people who want it.
“The same question applies to Alzheimer’s disease. Should we screen for it? Is it appropriate to tell asymptomatic people what their status is? Do you tell people about possible risks? Opinions change. Thirty years ago the majority of physicians in this country didn’t tell people the truth about cancer; now 90 percent of them tell the truth. In one generation there has been a sea change in attitude.” Siegler assumes that the rest of doctors tell a close family member. In a study of early Alzheimer’s patients, 80 percent of American doctors told the patients, as opposed to fewer than 50 percent of Italian doctors; the Italians told a spouse or other caregiver instead.
Siegler’s inclination is to always tell the patient whatever he can. “Information is a good, and it’s hard for me to understand that information in the hands of the people who need it the most is bad. The truth has to be delivered in the proper ways–the timing has to be right, the tone has to be right. But I remain convinced that good doctoring includes the delivery of that information.”
Siegler believes that doctors must do more to ensure that patients can make their own decisions based on the information they’re given. “Individuals have to be informed about the choices available to them. They have to understand them conceptually and emotionally. When you’ve done that, they have to have a kind of interaction and relationship with the physician that really delegates to them a legitimate role in this two-person process. There are great subtleties in this process, and it varies with a lot of things–the chemistry between the two parties, the way the information is delivered, the patient’s emotional state. But if the process works well the patient will feel like the decision maker. You and I could look at the same cases and come up with different conclusions. But we’d both be outraged if individuals were not given the information and allowed to make the decision.”
There are of course many patients who are incapable of making decisions for themselves, including babies. The lines between a hopelessly premature infant and a viable one, for instance, are growing increasingly blurred, making it difficult for doctors to decide when to push to save a premature infant. How much of the decision belongs to the parents–who, after all, will have to live with the results of that decision–and how much to doctors or government agencies? How can you know which preemies will be brain damaged and which can hope to have a reasonable expectation of a worthwhile quality of life? “I’m just a simple adult internist,” says Siegler, who has four children of his own and clearly adores kids. “However difficult decisions are in adult medicine, they’re three times more difficult when you’re dealing with children, particularly infants.”
With children, he points out, one is always working with a surrogate. “Physicians are relatively unsuccessful in making prognoses for adults, and prognoses for children are even more difficult. There are some obvious cases where death is certain, as when there is no brain function. But there are many situations where the outcomes are less predictable in terms of survival, functional capacity, and the quality of the life of the child. There are the complexities of the family social dynamic.”
Lantos, whose work at La Rabida involves infants with chronic conditions, says parents don’t always make the best primary decision makers for small children. “You have problems when they disagree with each other, when they disagree with accepted health-care standards, and when they disagree with particular members of the health-care team. On some issues I think we’ve worked out a fragile societal consensus. It used to be acceptable to just let babies with Down’s syndrome who needed operations die. It’s no longer acceptable, and some parents disagree with that.”
Some people think doctors can push too hard to save infants whose prospects are poor, but Siegler disagrees. “Had researchers not pushed the limits of their abilities 15 years ago, babies weighing two or three pounds at birth might still be dying. Today many survive with intact capacities. It’s not true that the majority of preemies have mental damage. At the 28-week level, the majority do quite well.” He says 30 to 40 percent of these babies will have a measurable but minimal degree of learning disability. “But babies at a borderline birth weight [800 grams and under] and age [22 to 26 weeks], who were all dying and are now being saved, there we don’t know the outcomes. Every time a neonatalogist pushes back the barriers the point is made that in saving lives they’re [causing problems].”
Of course full-term babies often have problems too. “I think–going back to my box with boundaries–that there are a lot of reasonable decisions that can be arrived at within those boundaries. If a child is born with a cleft palate or an obstruction of the intestine, all other things being equal, we as a society have said that it is not reasonable to make a decision that will permit such a child to die. Similarly, an inevitably fatal condition–the lungs aren’t functioning–limits the rights of the parents to say, “Do everything.’
“There are other cases where the situation is extremely grave–a 500- or 600-gram baby with a grade-four intracerebral hemorrhage and a substantial amount of bowel necrosis. The outcome is grim but not certain. Should that baby have surgery to remove the dead bowel and give it a chance? That clearly should be the family’s judgment. The ultimate decision makers have to be those who have ultimate responsibility to care for people.”
Lantos worries that families may begin to lose that right. “There’s less to do with life-sustaining issues and more with societal resources. We have some kids in difficult situations whose care costs half a million dollars a year. There’s no chance that they’ll get better. It’s similar to geriatric cases: you have an Alzheimer’s patient who is on dialysis, who is in bad shape and is going to get worse. It becomes a money question more than anything else. The money questions become very diffuse, because generally the people paying are not the people involved in decision making. The health-care decisions are made by families, doctors, and patients. Reimbursement decisions are made by hospitals, managed-care providers, and insurance companies. One of the changes in American health care over the last ten years is that doctors and hospitals are finding themselves at final risk for extraordinarily expensive care. The problem is, nobody has quite figured out what role economic rationing should play in the decision. Everybody wants cost containment, but no one wants to deny any particular patient life-sustaining treatment.”
Comatose patients are also unable to make decisions for themselves. When a comatose woman was recently found to be pregnant, apparently raped by an employee of the hospital where she was being cared for, a panel of hospital doctors, including an ethicist, came to the conclusion that the fetus should be aborted. The woman’s parents refused, saying that they would happily take on the task of raising their grandchild. The infant was born premature but healthy.
Hearing this story, Siegler winces when the ethicist is mentioned. “I fall back to the standard of decision making that I would like to defend: individuals making decisions for themselves or for their loved ones. It should be left to the woman or her family members. The other issue here is the legal and ethical outrage of the rape, and the institution’s failing its responsibility to keep that from happening.
“A few years ago there was an interesting paper in the Journal of the American Medical Association on two women who were pregnant and became brain-dead. The question was how they should be cared for. The doctors went back to the families and asked them what they wanted to have done; they told them that they had the right to turn off the machines. One family decided not to go ahead but to withdraw. The other was vigorously in support of the idea of salvaging the baby. The doctors kept that mother alive to 27 or 28 weeks. She died in the midst of a crisis, but the baby was saved with a C-section. Both decisions were right–for the families involved.”
Some of the most difficult ethical issues concern the dying. “The dying process is in a way the most physically and emotionally demanding experience that doctors and families face,” says Siegler. “It takes a wide range of clinical and emotional skills to help patients and their families, and it’s very demanding of time. The reality is that we all have to go through it. Not all of us are going to be in traffic accidents, not all of us are going to have heart attacks. But we will all go through death.”
It’s generally assumed that the cost of dying in this country has become extraordinarily high, but Siegler disputes figures that purport to show that, insisting that medicare does not spend an inordinate amount on the last few months of life or that we could save a lot of money by not spending so much on people who are going to die soon anyway. He cites articles that come to very different conclusions, including a 1994 study by Anne Scitovsky that showed, in his words, “The cost of care in the last year is maximal when the patient starts the year healthy. It’s lowest when the patient starts the year chronically ill and institutionalized. And it’s medium when the patient is chronically ill and not institutionalized.”
But Siegler thinks the perception that the cost is high is dangerous, because it increases the possibility that pressure will be put on people to hurry up and die. “Very complex conflicts and emotions are always at work in these situations–between care givers, families, doctors, patients, and friends. Patients may feel obliged to die in a timely fashion and not use up family resources. Another danger is that serious depression often goes along with physical illness, and that may influence a decision to die.”
Because there are so many stories about individuals who are hooked up to life-support systems and not disconnected until their bank accounts are drained, some older people, worried about the financial well-being of their survivors, are directing that paramedics not be called should they keel over. Siegler finds that appalling. “It is more ethical to stop treatment than to not initiate life-saving treatment. We do it as a kind of trial–we don’t know what the outcome will be. With chronic, terminal disease we know the individual is dying. But with acute crises and unanticipated problems it would strike me that the ideal situation is one where you have maximum intervention up front and determine if the situation is reversible–whether the patient can return to the status quo and get to a quality of life that is satisfactory. Medicine ought to be able to intervene with maximum aggressiveness at that moment–and be prepared to acknowledge if our up-front efforts have not succeeded. If we rescue someone who is left permanently unconscious we have to know that’s not what anyone would want. If we as a society and as a profession are not prepared to accord people the right to say, “This is not the quality of life this person would have wanted,’ and back off, people are going to make the decision not to let us intervene at all. I think society will permit the early intervention of the medical profession if we will permit individuals and families to say enough is enough. If we won’t they won’t trust us.
“Everybody has anecdotes to tell about aggressiveness of care when the doctor should have backed off. No doubt that occurs more often than it should. But there are complicated reasons why doctors sometimes don’t back off. This is an area where more attention has to be paid [to patient and family wishes], but it’s important to acknowledge that care is being simultaneously given to patients and their survivors. I believe that when the handwriting is on the wall that the patient is inevitably dying, the tendency of doctors is to back off. It’s in the face of uncertainty that resources are expended. We have no crystal balls.”
Anyone who’s ever observed the slow torture of a death from cancer knows that many doctors still don’t do enough to alleviate pain. “Studies have shown that in the last 30 years, despite having effective pain medications available, medicine and nursing have not done an effective job overall in controlling pain,” says Siegler. “It’s a blight on the system. I think a lot of the impetus toward assisted suicide and euthanasia results from the failure of the medical system to take care of physical pain. There are too many people left with a sense that if doctors cannot be trusted to relieve pain they will be forced to take matters into their own hands–and one solution is assisted suicide. It’s a move toward gaining control of the dying process. I don’t think it’s the kind of solution from which society as a whole will benefit.”
Siegler says that hospice doctors and nurses have shown that it’s possible to take care of their patients’ physical and spiritual needs and make them comfortable. “It is unethical to allow people to suffer with physical pain. The number of situations where it may be impossible to control pain are negligible, and the relief of pain is a universal medical ideal that goes back thousands of years.”
At what point does suffering become excessive, and who should decide when that is and what should be done about it? Siegler observes that in the last 15 years American society has held that there’s a clinical, practical, and ethical difference between discontinuing life-sustaining care at an individual’s request, even if it results in death, and hastening death by assisting suicide or administering a lethal agent. “That distinction has guided most physicians in this country for the 20 years that life-sustaining equipment has been available. There are still gray areas, like providing adequate pain relief even if doing so may at times hasten death.”
He hesitates when asked if there’s a real difference between allowing a comatose patient to starve to death and administering a drug overdose. “I agree, theoretically, that if withdrawal of liquid and nutrition is intended to have a lethal effect it’s the same thing. Unless the patient is experiencing unremitting, unrelenting pain it’s not the right thing to do. The withdrawal of fluid is a relatively gentle way of dying–the patient can be made comfortable. But in hastening death you trivialize death. You run the risk that perhaps some deaths will be hastened that shouldn’t. And you put too much control in the hands of medical personnel.”
Asked whether he thinks euthanasia can ever be justified, he says, “I’m a strong advocate of not legalizing it. Recent trends are very dangerous for society.” He pauses. “As a practitioner, I can imagine that circumstances would arise where a patient might need assistance. But euthanasia is bad for society because a large number of the people who are at greatest risk are already vulnerable to the medical system. I worry about the uninsured, the poor, the chronically ill, the physically and mentally disabled population, the people who have “incurable’ illnesses–alcoholism, drug abuse, HIV infection.”
And he worries that legalizing assisted suicides–as Oregon and Western Australia recently did–could have dangerous consequences. “Look at the Karen Ann Quinlan case: American courts have generally said you cannot limit the freedom and rights of people simply because they cannot make their own choices; those choices revert to their proxies. I believe that [trying to] restrict a constitutional right to assisted suicide only to those capable of making their own choices won’t stand–it will be extended to the next of kin.”
Siegler describes how seven or eight years ago in the Netherlands prosecutors and medical association officials agreed that if certain guidelines were adhered to there would be no prosecutions in euthanasia cases. But, he points out, there have been very few prosecutions, even when it’s been clear that the guidelines weren’t being adhered to. “There’s a lot of evidence to suggest that the practice has been extended to incompetent adults and infants and children.” Every case is supposed to be reported, though very few have been. Patients are supposed to be conscious and requesting euthanasia, but many patients have been unconscious and many have been infants and children. “The key point is that there is no law,” says Siegler, which makes regulation much more difficult. “The one large-scale social experiment conducted anywhere in the world suggests a rapid extension [of the principle].”
However, Siegler defends the right of surrogates to insist that doctors sustain hopeless cases. “Society has an interest in defending the most helpless. I reject the notion that people like this are being kept alive for pecuniary reasons. Sometimes we get individuals–families, doctors, nurses–who may hold very strongly to the idea of the sanctity of biological life. You may have committed individuals who think that such treatment is appropriate. The problem is more often that families hold to these beliefs tenaciously, and doctors and nurses go along, especially if there’s no clear indication of what the individual wanted. Who gains? Families feel like they’re doing the right thing.
“Many people feel not only that this is an inappropriate use of resources, but that it’s inappropriate to the dignity of the individual. So far we have relied on the decisions of individuals in these matters. We’ve allowed them to be private choices and have not yet intruded as a society. But we may, for economic or social reasons. To a surprising degree up until now, economics has not driven end-of-life decisions in this country.”
In April 1989, after six months of watching his baby lying in a coma, Rudolpho Linares pulled a gun and assorted plugs, and held Rush-Presbyterian-Saint Luke’s Medical Center staff at bay while his son died in his arms. “Everybody agreed that there was no hope,” says Siegler, who later got involved with the case. “On several occasions the parents had made efforts to have the life support removed, and they were rebuffed. Suggestions were apparently made that they should seek a court order, but the Linareses are not sophisticated people and that didn’t mean much to them. Rudy finally took things into his own hands. This is clearly not the way that end-of-life decisions should be made.”
Linares was indicted for first-degree murder, though the charges were later dropped. The state’s attorney at the time was Cecil Partee. Troubled by the case, Partee convened a group of more than 50 people–doctors, nurses, chaplains, patient advocates, and ethicists, including Siegler–to find a consensus on how such things should be handled in the future. Out of their meetings came the Illinois Health Care Surrogate Act, which became law in 1992. “It’s a fabulous law, one of the very best in the 30 states that have them,” says Siegler. “It’s intended to make end-of-life decision-making easier and avoid judicial review.”
The law gives decision-making authority for incompetents to a surrogate from a prioritized list–from the top, a spouse, adult child, parent, grandchild, sibling, or friend. The surrogate doesn’t need to have a lawyer and, along with the doctor and hospital, is immune from liability suits. The law also allows a doctor to take charge if the surrogate is, in Siegler’s words, “acting outrageously.”
The law makes it clear that responsibility for decisions belongs to the families first. Siegler says that one of the most common causes of death for patients on dialysis is renal failure that’s the consequence of the patients voluntarily stopping dialysis. “Sometimes they tell us, “Enough is enough. Let’s back off.’ We stop when they say to. We stop when the situation is grave and irreversible. We stop when technical intervention no longer makes sense. Who decides? To the extent that the individual can make choices, they decide. If they have not made choices or can’t make choices, we turn to their loved ones, their surrogates, and ask what they think should be done. I think it is highly undesirable to allow the decision-making process to be handed to a third party–the payers, managed care, the government.”
But he does worry that things are changing. “We have to look ahead to what the future major ethical issues will be. I think the ethics of putting choices into the hands of payers for services instead of those of individuals and families will be far more pressing issues in the next ten years than new technologies. The dominant issue in this society is how we are going to harmonize and integrate the autonomy of the individual–consistent with American principles and libertarian ideas–with the new realities of medicine that’s being incredibly dominated by economics. Will the choices still be made by doctors, patients, families–or placed in the hands of third parties whose interests may be more the efficient use of resources than respecting individual freedom and the right to choose?
“I am an enormous believer in science, and I think that people will look back on the second half of the 20th century as the beginning of a golden age of medicine and science and man’s understanding of diseases. Science in the interest of man spurred development in the post-World War II years. In the next 20 years we have to involve people. The potential for a clash between values is enormous.”
Art accompanying story in printed newspaper (not available in this archive): photo of Mark Siegler by J.B. Spector.