Instilling in doctors a strong commitment to do right by their patients hasbeen a concern of the medical profession since antiquity. Indeed, the ancientHippocratic Oath--with its pledge to "come for the benefit of the sick" and torefrain from divulging the confidences of patients or engaging in sexualrelations with them--is still administered, in one form or another, to thegraduates of most medical schools. The American Medical Association also has itsown code of ethics, which dates back more than 150 years and includes, in itsmost updated version, thoughtful guidance on matters like fetal research andend-of-life care.
What is noteworthy about how such questions are handled today is the arrivalon the scene of an entirely new sort of specialist: the medical ethicist.Professionals with this title--or the equivalent title of bio- or clinicalethicist--can now be found at the National Institutes of Health and the PublicHealth Service, on the health committees of Congress and the state legislatures,at biotechnology and managed-care companies, and of course at hundreds ofclinics and hospitals.
What these designated advice-givers actually do varies from institution toinstitution. Where medical research is being conducted, they usually serve onreview boards meant to ensure that human subjects give their informed consentand are not placed at unacceptable risk. At managed-care companies, they areoften brought in to give their blessing--and thus, it is hoped, some protectionagainst liability--to policies that might one day have to be defended in court.
More often, however, and more controversially, medical ethicists serve as "on-call" consultants at ordinary healthcare facilities, where they offer bed-side guidance on issues ranging from the mental competence of patients to whether certain extraordinary treatments should be withheld or withdrawn. By playing this role--and doing so at ever more institutions--the professionalpractitioners of medical ethics have raised a host of questions, not only about their own expertise and authority but, ultimately, about the very nature of medical care.
LIKE SO many other recent social and cultural movements, the effort to makemedical ethics into a specialty of its own emerged from the campus upheavals ofthe 1960's. In keeping with the activist spirit of the day, many professors ofphilosophy decided to leave behind the historical and technical questions thathad long dominated their discipline. Instead, they turned their attention towhat they called--often as a euphemism for political agitation--appliedphilosophy, a rubric that covered, among many other things, the life-and-deathproblems posed by modern medical care. The idea, according to Daniel Callahan,one of the pioneers of bioethics, was to give philosophy "some social bite, some'relevance.'"
Academics were not alone, however, in wanting to look more systematically atmedical decision-making. Many physicians were interested as well, feeling thattheir work had become vastly more complicated--and more fraught with difficultmoral issues--because of the advent of new technologies and treatments. At thesame time, public concern over medical ethics was growing. Revelations in theearly 1970's about the U.S. government's Tuskegee study--in which hundreds' ofAlabama sharecroppers with syphilis went untreated--fueled the perception thatthe profession warranted scrutiny. Questions about the limits of medicalauthority were raised, too, by the 1975 case of Karen Ann Quinlan, a young NewJersey woman kept alive on a respirator after lapsing into a coma. In amuch-publicized decision, the state's Supreme Court eventually ruled that herfather, despite her physician's opposition, could have the respirator removed.
As a result of these various developments, the 1960's and 70's witnessed aremarkable burst of institution-building among the newly self-proclaimedbioethicists and their medical collaborators. Scores of symposia, meetings, andconferences were held on issues like death and dying, organ transplantation, andnew fertility techniques. More importantly, the first institutes devotedexclusively to the study of medical ethics were created, with funding fromdonors like the Rockefeller Foundation and the National Endowment for theHumanities. They were led by Daniel Callahan's Hastings Center for Bioethics,the Kennedy Institute of Ethics at Georgetown University, and the Society forHealth and Human Values.
Nor was professional recognition for the new field long in coming. In 1992,the major accrediting agency for the nation's healthcare institutions mandatedthat all hospitals establish formal procedures for dealing with ethical issuesarising from patient care. The decision seemed, in effect, to promise fullemployment for medical ethicists.
Today, the bioethics "industry," as insiders do not blush to call it, is booming. Some 50 universities in the U.S. now have academic centers focusing onmedical ethics, and many more provide courses on the subject as part of theirofferings in the humanities. The field has a number of publications of its own,including the Journal of Clinical Ethics, the Cambridge Quarterly of HealthcareEthics, and the Hastings Center Report, and the largest of its professionalorganizations, the American Society for Bioethics and Humanities, boasts some1,600 members.
IF THE institutional stature of medical ethicists has increased dramaticallyin recent years, so too has their self-assurance. During the field's infancy,practitioners often exhibited a notable degree of modesty about their ambitions.As Daniel Callahan confessed in 1973, he "resisted with utter panic the idea ofparticipating with the physicians in their actual decisions," much preferring "the safety of the profound questions I pushed on them."
Today such modesty is far less common. Albert Jonsen, who teaches bioethicsat the medical school of the University of Washington in Seattle, likes to thinkof himself and those he trains not just as consultants, ready to provide advicewhen it is solicited, but as "doctor-watchers." As he describes his role at thehospital,
I follow the little party of doctors, nurses, and medical students to the bedside of very sick people. I read patients' charts, talk about patients' ills, participate in discussions about patients' fates. Although I eschew the pretensions of a white coat and beeper, I admit to some gratification at being "inside." More than that, I believe that I have some right to be there and that my being there does some good to doctors and patients alike.
What this "good" amounts to, according to medical ethicists, is encouragingdoctors to give full consideration to certain key principles in resolvingclinical dilemmas. Among these principles are the traditional--if vague--obligation to act for their patients' benefit and to avoid harming them.In a more modern vein, doctors are urged to respect the "autonomy" of those whomthey care for, which typically means obtaining their informed consent for anycourse of treatment.
A number of bioethicists have taken their mandate a step farther. Harking back to the activist origins of the field, they argue that the immediate clinical setting must be Seen as just one part of the wider--and deeply unjust--American healthcare system, in which medical resources are unequallydistributed and the special needs of minorities and women are ignored. The members of the International Network on Feminist Approaches to Bioethics, for example, aim to "develop a more inclusive theory of bioethics encompassing thestandpoints and experiences of women and other marginalized social groups,"believing as they do that many of the "presuppositions embedded in the dominantbioethical discourse ... privilege those already empowered."
ARE ANY of these principles, from the modest to the politically ambitious, a worthy supplement to the demands of the Hippocratic Oath? For the most part, unfortunately, they are not, and for no more complicated reason than that theycan lend themselves to outcomes that are far from self-evidently "ethical."
Feminist bioethics is especially problematic in this regard. Consider, forinstance, one of the cases discussed by Mary Briody Mahowald of the University of Chicago in her recent book, Genes, Women, Equality.(*) According to Mahowald,a pregnant woman named Julia Smith Andre was told that because of her ownmetabolic disorder, she would have to follow a restrictive diet to keep herchild from having serious birth defects. Andre refused to comply--and the childwas born profoundly retarded.
Though it is unclear whether Andre could have been legally compelled tofollow the doctor's prescription, the verdict on her behavior, as an ethicalmatter, would seem straightforward: she violated her duty to her unborn child.But not so fast, Mahowald insists. Feminist "standpoint" theory, she informs us, grants "privileged status to [Andre's] decision regarding diet," since Andre--atleast in Mahowald's ideologically blinkered view of the situation--is "theperson most affected."
No less potentially dangerous is the relentless emphasis of bioethicists onthe idea of personal "autonomy"--that great shibboleth of modern liberaltheory--even in cases when patients are plainly incapable of deciding mattersfor themselves. In 1996, a schizophrenic man named Thomas W. Passmore imagined that he saw "666"--the biblical symbol of the anti-Christ--on his right hand and, terrified, used a circular saw to cut off the offending limb. Surgeons atthe hospital wanted to sew the hand back on, but Passmore, still in the grips ofhis psychosis, refused.
Was this delusional man quickly medicated with antipsychotic drugs and thenrushed into the operating room? Alas, no. A group consisting of lawyers, psychiatrists, and a judge, acting in accordance with the dictates of medical ethics and in the name of "autonomy," decided to abide by Passmore's wishes: thedemonic appendage was not reattached.
THE PRACTICAL issues that confront work-a-day clinical ethicists are notusually so extreme, of course. But even when it comes to the ordinary businessof their profession, it is not at all clear what sort of specialized abilitiesor knowledge these trained "experts" bring to the hospital bedside.
In a study published in the Journal of the American Medical Association, Ellen Fox and Carol Stocking of the University of Chicago asked more than 100ethics consultants to review seven hypothetical vignettes involving a patientsimilar to Karen Ann Quinlan--that is, someone who showed no awareness of theoutside world, was considered incapable of experiencing pain, and had virtuallyno chance of regaining consciousness. Fox and Stocking chose this clinical situation because it is the one most often confronted by medical ethicists. Moreover, they were careful to exclude messy, confounding details, therebymaking the cases "more straight-forward than [those] an ethics consultanttypically encounters." Their finding: an almost complete lack of consensus.Indeed, for six of the seven cases, there was not even a majority response.
Explaining this astonishing result--which might be compared to discoveringthat 100 doctors had widely divergent opinions on how to handle anappendicitis--is hardly difficult. The fact is that there are few meaningfulstandards for bedside ethicists. Some are Ph.D.-level academics, others arelawyers, sociologists, or social workers, and still others are physicians ornurses. Nor is any particular course of study required to turn them into membersof the ethicists' guild. Their training runs the gamut from years of specializeddoctoral work to the completion of an "intensive" ten-day course, like the oneoffered annually at the Kennedy Institute of Ethics at Georgetown.
But the absence of professional standards is not the most serious problemafflicting the field; rather, it is the lack of any coherent idea of what even aproperly educated medical ethicist might add to a difficult clinical situation.In 1998, the American Society for Bioethics and Humanities attempted to codifythe profession's "core knowledge areas" and "core competencies." A clinicalethicist, the group suggested, should not only be familiar with such subjects asmoral reasoning, health law, and the organization of the healthcare system, butshould be able, among other things, to "engage in creative problem-solving,""listen well," "communicate interest and respect," and "distinguish ethicaldimensions of [a] case from other overlapping dimensions."
What is remarkable about this otherwise commonplace list is that such "core"responsibilities should be considered the special domain of medical ethicists.Are they really outside the purview of medical doctors?
HERE, OF course, is the rub. For despite the help that some bioethicistshave occasionally provided in making tough medical decisions, there is nodenying that their expanding role in American healthcare directly impinges onthe traditional duties of physicians.
In the Journal of the American Medical Association, John La Puma, a physician, described a number of representative ethics consultations that tookplace in his hospital in the course of a year. One concerned the question ofwhether an alcoholic should receive a liver transplant; another involved ahusband who, hoping for a "miracle," wanted aggressive measures taken to revivehis irreversibly brain-dead wife.
Both cases were resolved satisfactorily, but one finishes La Puma's account wondering why it was necessary for an ethicist to be involved in either one. After all, determining whether a patient is a suitable candidate for a liver transplant is not an exotic clinical decision. The physician must determinewhether the potential recipient is likely to stop drinking and stay sober, aprocess that entails learning something about the patient's character, drinkinghistory, and social habits. Similarly, helping a husband understand his wife'sdim prognosis is the sort of thing that physicians have always been expected todo, and have wanted to do, in fulfillment of the humane intentions that led themto choose medicine in the first place.
There are some doctors, to be sure, who welcome such intervention. A 1992 study found that physicians who requested ethics consultations found them"helpful" or "very helpful" in 86 percent of the cases. Others, no doubt, likethe idea of sharing the responsibility--especially, if necessary, the legalresponsibility--for the sort of emotionally trying decisions about which apatient's family might eventually have second thoughts.
But most doctors, it seems, harbor deep--and justifiable--reservations about having an "ethical" intermediary between themselves and their patients. Not onlyis it intrusive and time-consuming, but, as one physician told the authors of anarticle in the Journal of Clinical Ethics, it suggests "that the doctor is notsure," that "he's looking for affirmation elsewhere" and "can't make up hismind." Moreover, as one of his colleagues observed, by turning ethical questionsinto a specialty, medical institutions are practically inviting doctors "toshunt the responsibility away to a consultant."
THE GREATEST risk posed by today's growing cadre of medical ethicists is notthat their advice will directly harm patients. Rather, it is that their presencein clinics and hospitals will tempt physicians to restrict their own jobdescription, reserving to themselves the technical management of illness andinjury while leaving the human side of the equation to the appointed "experts."
These twin aspects of doctoring are not so easily separated, however, as the Hippocratic Oath plainly recognizes. The knowledge at a physician's disposal canbe used for good or ill, depending on his professional character. This hasalways been true, but its importance cannot be emphasized enough at a momentwhen medical technologies have vastly increased the options available for treating disease and prolonging life. What is urgently needed at the bedside ofpatients is not self-styled professional ethicists, but ethical doctors. Ghettoizing the moral side of medicine is not the way to produce them.
(*) Oxford, 314 pp., $ 39.95.
The authors wish to thank Lee Zwanziger for her insights and suggestions.
