As a practitioner of a new medical specialty known as clinical ethics, Jonathan Moreno joins the burgeoning cadre of academics who are making the leap from the blackboard to the bedside.
Jonathan Moreno liked his job as an associate professor of philosophy at George Washington University. But after ten years of tutoring undergraduates on the fine points of moral obligation, the young scholar grew restless. I would sit in my office, liter ally four blocks away from the White House, and think: I might as well be in Topeka, Moreno recalls. For me, the distance between academic philosophy and public affairs was a gulf.
Professor Moreno found salvation when he became a resident ethicist at Suny Health Science Center in Brooklyn. These days, he spends much of his time in the intensive care unit: advising doctors, counseling the genetic counselors, soothing fretful patient s with daily doses of moral uplift. Sure, its great to teach undergrads, says Moreno. I know its a public service and all that. But heres an opportunity for philosophers really to be vital in the affairs of society. Its too good to resist.
As a practitioner of a new medical specialty known as clinical ethics, Moreno joins the burgeoning cadre of academics who are making the leap from the blackboard to the bedside. Advocates of clinical ethics argue that moral decisions involving patients are too complex and intricate to be left to doctors, and should instead be managed by a new professional cohort of in-house moral experts. Armed with techniques to prevent ethical problems before they occur, in the words of one promotional pamphlet, the philosopher ethicists aspire to a secular role comparable to that once played by religion. But there is a crucial distinction between the old men of the cloth and the new. The ministers understood that their role was limited to matters non-medical: saving souls, guiding prayers, comforting the dying and the grieving. The clinical ethicists, though, regard themselves as authorities in the medical as well as the pastoral sphere: in their view, an ethicists advice on moral matters carries the same weigh as that of a surgical consultant in his specialty. If youre a cardiologist, and a foot problem arises, you may call in a consultant in that particular specialty to help identify the problem, explains Thomas May, an ethicist at the Memorial Medical Center in Springfield, Illinois. Similarly, moral quandaries beyond the grasp of doctors will seem obvious to a philosopher, he says, because, you see, we deal with these concepts every day.
More than mere advisers, these fee-for-service philosophers see themselves as experts, capable of passing judgment on what should and should not be done in matters of life and death. They weigh empirical data, parse risk-benefit ratios and wield ethics case analysis grids with algorithmic certainty. Those who have entered the guild are quick to warn moral rookies against the dangers of lay ethical analysis. It simply is not within the purview of most patients and family members to understand the complex nature of the moral judgments facing them, sighs Nancy Dubler, a lawyer-ethicist for the Montefiore Medical Center and author of Ethics on Call, a book about her fledgling profession. One would have to be able to abstract from what is, at this point, a rather large literature.
The problem with all this is basic. Clinical ethics is not medicine, which is to say it is not science, which is to say it is to a very large degree whatever anyone wants it to be. In attempting to make a medical profession out of the study of what is morally right and wrong, the ethicists confuse the empirical and the theoretical. A surgeon who recommends amputation of a gangrenous limb as the right procedure means by right an action that will save the patients life. What a philosopher means by right is the action that is most moral. But these two rights are not equally absolute. The surgeons recommendation rests on an agreed-upon set of facts and criteria: there is no question that amputation is the appropriate action in extreme cases of gangrene. The philosophers recommendation depends on a set of criteria that is not agreed upon, but varies from culture to culture and, more and more, from individual to individual. One mans categorical imperative is another mans heresy.
This definitional confusion affects the ethicists work across the board. For example, ethicists frequently are called upon to advise on contested questions about when life should end, a type of decision they claim to be entitled to make by dint of their superior knowledge and skills. When the views of the ethicists conflict with wishes of patients and their families, the ethicists may naturally be inclined to favor their own judgments: After all, who is the expert here? And there is the problem of relevance. The professionalization of ethics, regulated by the federal government and supported by hospitals and insurers, has interposed between doctor and patient a new layer of bureaucracy. Doctors attempting to resolve basic questions of fact, and to assess proper medical treatment according to fact, increasingly find themselves instead wandering down Wittgensteinian byways and into Kantian cul-de-sacs what constitutes life? what constitutes the ending of life? what constitutes the beginning of life? what constitutes the beginning of the ending of life? Finally, there is the problem of just whom, in their attempts to quantify the moral dimensions of medicine, the ethicists are really serving. A swelling corps of HMO utilitarians are cashing in on their ethical expertise, marketing their services to managed-care executives eager to dress up cost-cutting decisions in Latinate labels and lofty principles.
The discipline of clinical ethics was born in the aftermath of the right-to-die case of Karen Ann Quinlan, the New Jersey woman who languished for years in a comatose state as her family and her doctors fought out her fate in court. In 1976, the New Jersey Supreme Court suggested that, instead of litigating such hard cases as Quinlans, hospitals should in the future rely on in-house ethics committees composed of physicians, social workers, attorneys and theologians to help them sort out right from wrong. Federal regulators in 1992 formalized the bureaucratization of ethics with a directive by the Joint Committee for the Accreditation of Health Care Organizations that required hospitals to have in place a mechanism for the consideration of ethical issues arising in the care of patients.
In recent years, however, hospitals have moved away from unwieldy ethics committees, favoring instead the more user-friendly professional consultant. Over the past decade, an entire profession has grown up to meet this burgeoning bureaucratic need. Hospital administrators and risk managers today may choose among philosopher-ethicists, physician-ethicists, lawyer-ethicists and nurse-practitioner-ethicists all struggling to rationalize their place in an ever-more crowded marketplace of would-be moral experts.
As the plethora of sub-specialists within the specialty suggests, there is nothing close to a universal educational standard for becoming an ethicist. It all depends on where you went to school, and what you want to call yourself. The University of Chicago offers a yearlong pathway to moral expertise, during which time aspiring ethicists immerse themselves in analytical studies based on models of philosophy and legal reasoning, then sprint off to the intensive care unit for an ethical dry run. Ethics neophytes at the University of Virginia must slog their way though gsas 601 (A course for non-clinicians in basic anatomy, the process of disease through various organ systems...); relg 812 (Reviews the basic ethical thought and theories of central figures in the Western tradition); and gsas 515, a two-hour seminar that is, to put it mildly, ambitious in the questions it seeks to answer (May 9: Death and Dying paper due.... Assignment for next class: View video, Who Should Survive?).
For those seeking a real shortcut to enlightenment, Georgetown University offers an intensive two-week summer program. The Virginia Bioethics Network offers a still-more compressed course one week. And one week, Virginia Bioethics claims, is plenty: Upon completion of the six-day ethics program, fellows will be equipped to provide for an individualized method of case consultation for ethics emergencies. Not surprisingly, many in medicine question the new specialists professional competence and scientific standing. As James A. Tulsky and Carol B. Stocking noted in a 1996 article in The Journal of Clinical Ethics, ethics consultants have traditionally been reluctant to subject themselves to the kind of controlled clinical trials that would validate their claims to professional expertise. Ethicists, it seems, have ethical objections to being evaluated. Ethical concerns are [a] major stumbling block to per forming these trials, wrote the studys authors. All consultants ... believe that this service provides a benefit. Some believe so firmly that it is a necessary good that they would be unwilling to allow potential subjects to be randomly assigned to a control group.
This high self-esteem is not, alas, borne out by the data. Asked to rate the ethics consult they had just participated in, over a third of patients and families pronounced the consult to be not helpful: I feel it wasted precious time I couldve spent with my dying husband! commented one beneficiary in a 1996 article published in The American Journal of Medicine. A 1993 study published in The Journal of the American Medical Association further called into question the ethicists claim to technocratic mastery: after polling 154 ethics consultants as to what they would recommend in seven hypothetical vignettes involving a patient in a persistent vegetative state, the surveys authors were startled to discover little consensus among the ethicists; for more than half the vignettes, there was not even a majority response. [O]ur cases were specifically designed to be simple and unambiguous, noted the studys authors. Even though consultants cannot be expected to agree about everything, they must surely agree about some things if we are to respect their role-specific expertise.
And doubts about the ethicists moral and scientific authority seem to be growing. In the summer 1997 issue of The Journal of Clinical Ethics, Stanford University professor Barbara Koenig and four other researchers report the results of an extensive study of nine randomly selected ethics consultation cases. In only two cases, concluded Koenig, ... did the consultation process achieve a resolution that appeared to satisfy all participants. One case involving an elderly patient went especially awry. While ethical principles including autonomy, beneficence, and non-maleficence may have informed the process of decision-making, family members and the physician clearly held different views of their expression in action, wrote Koenig. Family members were extremely angry about the ethics consultationproceedings; one family member referred to them as a big sham in which the family had been railroaded.
Increasingly, families who have been the subject of clinical ethicists decisions are suing them and not for flawed medical practices, as is the norm in malpractice, but for what the families regard as wrongheaded moral decisions. In recent years, hospital ethics consultants have been named in at least five lawsuits, and criticized by a federal judge in a sixth. In the recent case of Bland v. Cigna Health Plan, for instance, a pulmonologist ethicist was dragged into court after he unilaterally ordered that one James Blands respirator be disconnected despite the fact that Bland, a registered nurse in the final stages of AIDS-related pneumonia, had stated before lapsing into a coma that his greatest fear was death by suffocation; that his final wish, therefore, was that he be allowed to die peacefully while being ventilated. But Cigna wanted to move the comatose Bland from the hospital to a cheaper hospice, and Cignas pulmonologist-ethicist advised that this was proper. About a half an hour after the ethicist ordered Blands disconnection, Bland gasped for breath and died. The family promptly sued both Cigna and the cost-conscious ethicist; in 1995, the case was settled out of court for an undisclosed amount. Then theres the case of Brianne Rideout, a 3 -year-old girl who in 1992 underwent treatment for a brain tumor at Pennsylvanias Hershey Medical Center. When Brianne lapsed into a stupor, the attending physician, after consulting with the hospitals ethics committee, informed Briannes parents that their daughters ventilator would be shut off. When the Rideouts vociferously objected, a consulting ethicist informed them that the hospitals decision was final. At the appointed hour, the Rideouts rushed to their daughters room, where they were restrained by hospital security guards and police officers as they thrashed and wailed, according to a newspaper account. As predicted, the child died shortly after the plug was pulled; and the Rideouts sued Hershey Medical Center. Last year, an appeals panel ruled for the Rideouts; according to the Rideouts lawyer, the two parties are now approaching a settlement.
Asked about such debacles, ethics consultants bemoan a recent outbreak of moral quackery. To hear them tell it, a once-proud profession has been overrun by unemployed Kantians, pietistic housewives and burnt-out management consultants, all eager to reinvent themselves as Socrates on a meter. I am horrified at the number of people out there who dont have appropriate training, says Nancy Dubler of Montefiore. You want to just stamp your foot and say, Go away. Stuart Youngner, ethics consultant at the University Hospitals of Cleveland, warns darkly that there are people out there who are doing this in a totally irresponsible way.... Theyre giving advice. Theyre writing on charts.... They are being hired and there has to be accountability. In hopes of protecting the public against ethical snake oil, Youngner and a colleague, Dr. Robert Arnold, head up the Society for Bioethics Consultation, which has convened a task force to explore the issue of standards. One idea is to draw up a code of ethics for ethics consultants, with punishments for practitioners of dubious competence.
But the real question is whether ethics consultation ought to be a profession in the first place. As Daniel Wikler of the University of Wisconsin points out, many of the problems ethicists regard as moral dilemmas are rooted in practical, not philosophical, concerns. During his three years as the chief ethicist for the University of Wisconsin Medical Center, Wikler found that, as he says, the job made use of not one ounce of my many years of philosophical training. Once, for example, Wikler and his fell ow members of the ethics committee convened to discuss what to do about a woman undergoing dialysis for kidney disease who failed to contact the hospital after her discharge in order to continue her dialysis, without which she would likely die. The commit tees discussion centered around recondite issues such as the meaning of autonomy. The big ethical dilemma was whether she had a right to withdraw voluntarily from treatment, Wikler recalls. There was a lot of going back and forth over that. Finally I said, Well, why dont we knock on her door? When hospital personnel visited the womans apartment, they found her in a dazed state. She was rushed to the hospital for immediate dialysis; Wikler had saved her life. Now, he says, the question is, Did my Ph.D. in moral philosophy set me up to ask that brilliant question? Wikler concluded it had not. Now when he does an ethics consultation, he does it only as a lay person. The more I speak as a philosopher, he says, the less useful anything turns out to be.
Too often, however, the ethicists are more enticed by theory than by practical questions of patient welfare. As the resident ethicist at St. Elizabeths Health Center in Youngstown, Ohio, philosopher James Reagan liked to deliver carefully typed-out speeches on the importance of ethical principles. I could not believe the rudeness, he says. People were literally putting their heads down on the desk. It was very humiliating. The hapless ethicist fared no better when he tried to explain the moral fine p oints of withdrawing a patient from life support. I knew from all of my learning and theory that the withholding of treatment does not, technically speaking, kill a patient, he says. So I explained that when you withdraw a patient from a ventilator, its not the withdrawal that causes the death, but the underlying condition youve started the ventilator to treat. I may have gotten a little bit into the four hypotheticals of double-effect reasoning. The response from the doctors was not all that Reagan had hoped for. They jumped up and called me a murderer, he laments. Physicians can be so wounding. Reagan says he later realized that, in his eagerness to limit the formal philosophical distinctions, he may have missed the point. I was perhaps too dependent on intellectual categories, he laments. What I didnt realize at the time is that, in certain cases, stopping the ventilator really is killing the patient.
As James Reagan belatedly discovered, the advice of an ethicist unlike, say, the advice of a podiatrist falls squarely into the most contested domain of social and public policy. Rawlsians and feminists; casuists and communitarians: all have their diver gent visions of what individuals should find life worth living for, or be willing to live with. And these visions will not always coincide with the wishes of the patient, much less the consensus of society.
Consider the personal journey of John Fletcher, chief ethics consultant for the University of Virginia Medical Center. Ordained as an Episcopal minister in his home-town of Birmingham, Alabama, Fletcher quickly came to realize he was not cut out for the ministry, and resigned his ordination. Im not an enemy of religion, he explains. But I must maintain my distance in order to maintain my sanity.
Several colleagues say that Fletchers strong secular emphasis colors his consulting. A physician at the UVA Medical Center recalls the case of a 15-year-old girl in the late stages of metastatic cancer who was refusing to endure yet another round of toxic and painful chemotherapy. Her parents wanted her to undergo the treatment. Did the girl have the right to refuse? A meeting was called between the patient, her family, the treatment team and Fletcher, the ethics consultant on duty. The family clearly had religious beliefs, recalls the physician, who was in the room at the time. And John proceeded to ridicule those beliefs.... At one point, the mother turned to him and said, Dont you think theres a chance that God will cure her? And John looked her straight in the eye and barked out, No! The girl, who had by this point already decided to go through with the treatment, ran out of the room in tears. Fletcher says he did the right thing: I felt I had to confront the mother, he says. Sometimes people need a little jolt.
Another example: many families, particularly those of Asian ancestry, believe that a dying child, or grandparent, should not be told they are dying. Ethicists, whose training puts heavy stress on the value of autonomy, often feel differently. Nancy Dubler of Montefiore says that, when families are reluctant to tell a loved one he or she is dying, its usually because they cant deal with their own feelings and sorrows. I asked Dubler how she would handle the case of a family who fervently believed that the unvarnished truth would snuff out a beloved grandmothers will to strive. What Ill usually do in that situation is sit down with the family, Dubler says. Ill explain Grandmas rights to know information about her condition.... Then Ill explain that, over the past few years, there have been a number of quite exquisite studies to show that people who are dying know they are dying. Then, if that still doesnt convince them, Ill tell some stories, some vignettes out of my experience; out of the literature. Then, if the family remains adamant, Ill say to them, Well, lets go ask Grandma. Well ask her, if theres bad news, does she want it? Oftentimes, Grandma says yes. What if Grandma still says ignorance is bliss? Would Dubler then spill the beans? I think I would, in some circumstances ... yeah, I think I would, she mused. The crowd I work with is generally inclined to tell their patients the facts about their condition.
Its this attitude of superior virtue that raises serious questions about the place of ethical expertise in a liberal democracy. If you take democracy seriously, then the basic rule is that every philosopher is simply a citizen, and every citizen a philosopher, capable of making decisions that reflect his or her conscientiously held beliefs, argues Giles Scofield, a law professor at Pace University. Scofield, as it happens, is also the former ethics consultant for the University of Colorado Medical Center. Wed all be sitting there, having some sort of conversation, and then, when I spoke up, they would look at me as if I knew what I was talking about, and the rest of them didnt, he says. Im a smart guy, but Im not God. I felt uncomfortable in that position. After a year, Scofield fled Boulder. I was the Shell answerman, he says. And I didnt like it. I didnt like feeling that I had more power than any one person should have.
Finally, and most disturbingly, there is the matter of ethics-for-hire. Increasingly, medical-ethics consultants are being retained by HMOs to assist them in decisions about grievance cases, risk management and noncompliant patients. Robert Wagener of the Center for Medical Ethics and Mediation in San Diego says that for-profit HMOs striving to do the right thing compose an ever-increasing share of his clientele. The movement away from traditional fee-for-service care ... has raised ... complex issues, writes Wagener in a 1997 journal article. These issues give new meaning to the struggle between the ethical principles of autonomy, beneficence, distributive justice, and fidelity. Wagener, whose conversation is an exuberant melange of John Stuart Mill and Getting to Yes, could not be more enthusiastic about the changes afoot. There is a much higher consciousness about the ethics of managing scarce fiscal resources, he says. Now, notice that I never say, saving dollars. I say, managing resources .
The explosion of HMOs has indeed created deep moral problems for health-care providers and doctors. But is an ethicist who is himself on an HMOs payroll really in the best position to adjudicate them? Wagener says, sure. What I try to do is help case managers to listen more carefully, he explains. I help them separate out what I like to call the presenting issue from what I call the underlying issue.
I asked Wagener for an example of how this works in practice. Well, he said, a particular experimental therapy may not be appropriate, or may not fit the pathway thats clinically indicated. As Wagener tells it, a client of his recently called to ask for advice about a young brain cancer victim who hankered for a treatment that the HMO did not cover, because it considered the intervention to be experimental. Thats where Wagener came in. I helped this client to understand that the young womans desire for this therapy was merely the presenting issue, he explains. The underlying issue was her fear of dying of brain cancer. And until arrangements were made ... to have this member talk to, perhaps, a psychiatric social worker about the underlying issue, we would all get tied up in knots over the presenting issue when, really, thats not what this argument is about at all.
Some observers might wonder if the presenting issue in cases of this sort might be the HMOs desire to deny coverage; the underlying issue, the desire to dress up that decision so that it sounded good. If an HMO wants to come up with an argument that sounds good, and theyre willing to pay enough money, there are ethicists out there who will provide them with that argument, says John Golenski, president of the for-profit Bioethics Consultation Group. You should see some of these guys who want you to co me in there and bless what theyre doing, he chuckles. Its like asking the priest to come in and bless the baby in the Mafia.
According to Golenski, image-conscious HMOs are feeling increasingly free to shop around for an ethicist who suits them. Weve been invited in to talk to a number of organizations, he says. And weve talked to them about what we believe to be a fundamental ethical problem with their policies. All of a sudden, its hasta la vista. ... They never want to hear from you again.
Several years ago, Golenski and his firm accepted PacifiCares invitation to conduct a daylong ethics retreat for its senior management in Orange County. PacifiCare is Californias largest for-profit HMO; and, in preparation for the retreat, Golenski care fully reviewed the companys written practices and policies. What he saw troubled him, he says. They were using aggressive marketing to skim all the good risk from the market, he says. At the retreat, Golenski says he raised his concern. We said, basically, that yes, they had a nice bottom line, but at some point they might want to start taking care of sick people. The prescription didnt go over well. Their Medicare risk managers started glowering at us, Golenski says. They kept saying, there must be ways in which we can categorically not do this. The ethicist was not invited back.
Dr. William Osheroff, a family practitioner turned corporate honcho, serves as PacifiCares medical director and is as well the director of its newly formed ethics committee. Even over the telephone, Osheroffs aura of twinkly jocularity is palpable: on my voice mail, he twice urges me to give me a jingle; his secretary, meanwhile, encourages me to call him Dr. O. But when it comes to discussion of ethics in managed care, the good doctor turns quite serious. While he readily admits that PacifiCares v ery public embrace of bioethics an internal committee, a values statement, a rotating stable of in-house consultants is a great marketing tool, he is adamant that his companys focus on moral matters is more than cosmetic. We are putting our decisions in a values context, he says. Yes, we value individual autonomy. But we also value community well-being. And our continued ability to, ah, manage resources. This goal is achieved, Osheroff proposes, by having more of this ethics stuff, rather than less.
Asked about John Golenskis account of the unpropitious ethics retreat, the expansive Dr. O becomes uncharacteristically taciturn. I cant recall what was said and what wasnt, he says. All I can tell you is that we opted not to work with him. Pressed further on the substance of Golenskis critique, Osheroff offers to fax me PacifiCares values statement.
Apparently unsure whether or not he has convinced me, Osheroff offers one final example of the virtues of PacifiCares ethics consultation program. Several years ago, he explains, PacifiCare was agonizing over whether or not to cover treatment of Turners syndrome, a chromosomal abnormality that causes growth hormone deficiency in girls. While Turners syndrome does not cause dwarfism, it does significantly impair growth: the average height of a woman with Turners syndrome is 48. It has been established that if Turners syndrome babies are injected regularly with a human growth hormone, they will grow an average of four extra inches. When the FDA approved this method of treatment in 1993, PacifiCare had a problem on its hands. I can tell you that it runs about $18,000 an inch to grow these kids, explains Dr. O. Now, is that a legitimate expenditure for people who pool their money to pay for health care? Thats why this was such an ethical conflict.
After conducting a review of the technology, Osheroff made a discovery: he learned that pediatricians are now able to map out the projected growth curve of individual Turners syndrome babies, from infancy to adulthood. After considerable soul-searching and anguish, he made a tentative decision: PacifiCare would cover growth hormone for Turners syndrome, but only for those cases in which the child was projected to grow to 410 or less. Pleased with himself, Osheroff presented his Solomonic solution to Fred Tillotson, one of several outside ethics consultants who sit on PacifiCares ethics committee. Ill never forget that moment, says Osheroff. Fred Tillotson just looked at me. He looked me straight in the eye and he said, Are you God? What gives you the right? What gives you the right to make a decision like that? How can you justify saying no to one and yes to the other?
Osheroff, duly chastened, began to reconsider his decision. And I thought, well, wait a minute, he says. We want these kids to be taller. Well, what about little Freddy, whose ears stick out? We dont cover that. What about Gus, whos self-conscious about his bald spot? What about Grandma, who wants laser surgery to get rid of her crows-feet?
The ethical solution clear, elegant, positively Kantian in its simplicity hit both Osheroff and Tillotson at the same time. We realized that if we did it for one child, wed have to do it for every child, Osheroff says. And so, you see, unfortunately , we cant cover it at all.
Shalit, Ruth. When We Were Philosopher Kings. The New Republic (April 28, 1997).
Reprinted with permission of The New Republic.
The AuthorCopyright © 1997 The New Republic
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