Über die Autorin bzw. den Autor

Charles L. Bosk is professor of sociology at the University of Pennsylvania and the author of Forgive and Remember: Managing Medical Failure and All God's Mistakes: Genetic Counseling in a Pediatric Hospital, both published by the University of Chicago Press.

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WHAT WOULD YOU DO?

The University of Chicago Press

Contents

Acknowledgments.......................................................................................................................................ixIntroduction What Would You Do? Juggling Bioethics and Ethnography..................................................................................xiii1 Professional Ethicist Available: Logical, Secular, Friendly.......................................................................................32 The Licensing and Certification of Ethics Consultants: What Part of "No!" Was So Hard to Understand?..............................................213 Institutional Ethics Committees: Sociological Oxymoron, Empirical Black Box with Joel Frader......................................................394 Margin of Error: The Sociology of Ethics Consultation.............................................................................................695 Bureaucracies of Mass Deception: Institutional Review Boards and the Ethics of Ethnographic Research with Raymond G. De Vries.....................876 Invitation to Ethnography.........................................................................................................................1077 A Twice-Told Tale of Witnessing...................................................................................................................1238 Irony, Ethnography, and Informed Consent..........................................................................................................1439 The Field-Worker and the Surgeon..................................................................................................................16710 An Ethnographer's Apology, A Bioethicist's Lament: The Surgeon and the Sociologist Revisited.....................................................18511 A Monument of Silence: On Not Giving Up Dr. Arthur's Ghost.......................................................................................203Counterfeit Courage and the Noncombatant..............................................................................................................225Index.................................................................................................................................................251

Chapter One

LOGICAL, SECULAR, FRIENDLY

Problem resolution through ethics based decisionmaking. Professional ethicist provides practical supportive help with personal decisions. Logical, Secular, Friendly PERSONALS ADVERTISEMENT

Writing in 1919, Max Weber said:

Consider modern medicine, a practical technology which is highly developed scientifically. The general "presupposition" of the medical enterprise is stated trivially in the assertion that medical science has the task of maintaining life as such and of diminishing suffering as such to the greatest possible degree. Yet this is problematical. By his means the medical man preserves the life of the mortally ill man, even if the patient implores us to relieve him of life, even if his relatives to whom his life is worthless and to whom the costs of maintaining his worthless life grow unbearable, grant his redemption from suffering.... Yet the presuppositions of medicine, and the penal code, prevent the physician from relinquishing his therapeutic efforts. Whether life is worth while living and when-this question is not asked by medicine. Natural science gives us an answer to the question of what we must do if we wish to master life technically. It leaves quite aside, or assumes for its purposes, whether we should and do wish to master life technically and whether it makes ultimate sense to do so.

What was true for Weber at the beginning of the century remains true for us postmoderns at its close-a technologically muscular medical science possesses on its own no wisdom about when and how it should be deployed. For Weber, the tragedy of modernity was the possibility of possessing the means to "master life" without any requisite wisdom about how to do so. But consider how much better equipped we are today to deal with Weber's "mortally ill man." If this man had any foresight, then he has a "living will" instructing his physicians how to manage the end of his life. If his physicians feel that his care is futile, they are empowered to discuss with the patient, if he or she is competent, or, if not, with the patient's family, what level of care the patient wishes. One possible outcome of these deliberations is a "Do Not Resuscitate" order entered in the patient's chart. If the family, patient, physicians, and nursing staff disagree about how to treat the last days of Weber's miserable man, then an "ethics consult" can be requested. Today, there is no shortage of procedures or moral experts able to speak to the questions on which science is silent-"whether we should and do wish to master life technically and whether it ultimately makes sense to do so."

How well these procedures accomplish their intended goals, how competently these experts provide satisfactory answers to those questions on which science is silent, are important questions. But to ask them this way-as if they were merely an exercise in policy assessment-implies that if these procedures or experts were found wanting, then some others are capable of producing "better" results. In a volume such as this on social science, ethics, and medicine, there is an almost irresistible temptation to make such an argument: namely, that the problems of bioethics are better handled using an approach that is more social scientific, that pays greater attention to culture and class, power and position, gender and ethnicity, than the standard bioethical explorations of how to manage problems like Weber's mortally ill man.

However, in this essay I wish to forgo the general pleasures afforded by preaching to the choir. As much as I might enjoy demonstrating from my own research how the trained sensitivities of the social scientist improve bioethical discourse, I think little new is gained by the exercise, it having been carried out so well so many times by so many others. Instead, I want to ask how it is that we are even in the position of having to demonstrate what should be obvious: that social science matters to bioethics. First, I want to explore how bioethics came to the dominant position it has today for discussing a whole range of questions about medical care. Second, I want to show what a surprising development is the emergence of bioethics as an applied discipline. In so doing, I want to ask how it is that social scientists who came to many of these issues before, or contemporaneously with, those philosophers who identify themselves as bioethicists now need to mount special pleas for our inclusion in, our relevance to, and our importance for the discourse of bioethics.

Looking Backwards

Now that there is a National Advisory Bioethics Commission, now that the Joint Commission on Accreditation of Healthcare Organizations mandates that hospitals need to have in place a mechanism for resolving ethical conflicts, now that numerous programs provide training that leads to certificates and degrees in bioethics, now that the graduates of these programs seek employment as "clinical ethicists," now that professional organizations and journals in bioethics have proliferated, now that a task force assembled under the aegis of the major professional societies in bioethics has issued a "consensus statement" on standards for "clinical ethics" practice and its practitioners, and now that over fifty academic medical centers have departments of or centers for bioethics, it is fairly simple to tell a "Whiggish" history of bioethics-one that makes not only its structural position but also its current intellectual configurations appear as both inevitable and desirable.

This history (which actually has more the structure of an "origins myth") is certainly familiar by now. Over the last thirty or so years, bioethics has been a response to a sense of crisis within the everyday organization of medicine. Some of that crisis was generated internally. Reports like Raymond Duff and Angus Campbell's classic 1973 New England Journal of Medicine article on the withdrawal of life support for severely compromised neonates after consultation with parents at Yale-New Haven Hospital took private clinical troubles and made them a public issue for the profession. The crusading dimension to Duff and Campbell's discussion, the if-this-be-treason-make-the-most-of-it rhetoric, is hard to overlook:

What are the legal implications of actions like those described in this paper? ... Perhaps more than anything else, the public and professional silence on a major social taboo and some common practices has been broken further. That seems appropriate, for out of the ensuing dialogue perhaps better choices for patients and their families can be made. If working out these dilemmas in ways such as we suggest is in violation of the law, we believe the law should be changed.

Duff and Campbell's article discussed neonatal intensive care, a rather recent and, at that time, still primitive technological development; but their essay spoke as well to all those other clinical arenas within medicine that had likewise expanded technologically, creating tensions for those now managing Weber's hypothetical "mortally ill man" that Weber himself could never have imagined. What for Weber had been problematic at a theoretical level given medicine's limited capacities in the early years of the twentieth century had now become empirically and emotionally difficult at the everyday level.

A second internalist critique appeared in the normally august pages of the New England Journal of Medicine when Henry Beecher published an expos of physicians' conduct of scientific research. Deliberate deception, a lack of a minimal concern with consent, sloppily designed trials unlikely to yield useful information, and overly risky protocols were among the faults that concerned Beecher. Like his colleagues at Yale, the Harvard physician had an innate faith that if problems became public, then they would be addressed. As David Rothman claims in his informative account of both the extent of and the limits to Beecher's whistle-blowing:

He noted with more rhetorical flourish than evidence or accuracy that the "thoughtlessness and carelessness [of the researchers with unethical protocols], not a willful disregard of the patient's rights, account for most of the cases encountered." Armed with such a formulation, he comfortably asserted that "calling attention ... will help to correct the abuses present." He maintained such an old-fashioned faith in the integrity of the individual researcher that, after weighing all the alternatives, he concluded: "The more reliable safeguard [is] provided by the presence of an intelligent, informed, conscientious, compassionate, responsible investigator."

There is something particularly American about this melioristic faith that open communication leads to solutions. There is little to no recognition by the authors of either article that problems may be intractable; values, discordant; goals, divergent; and decisions (or resolutions), difficult.

The very same criticisms that were made inside medicine were also made outside of it. The end-of-life questions asked in the New England Journal of Medicine by Duff and Campbell were also posed by Elisabeth Kubler-Ross in her trade publication On Death and Dying. The University of Chicago psychiatrist criticized medical practice for its emphasis on managing dying through a dehumanizing technological regime that ignored death's spiritual and emotional dimensions:

Maybe this question has to be raised: Are we becoming less human or more human? Though this book is in no way meant to be judgmental, it is clear that whatever the answer may be, the patient is suffering more-not physically, perhaps, but emotionally. And his needs have not changed over the centuries, only our ability to gratify them.

Here Kubler-Ross is exhibiting some of the denial that she claims is part of the first stage in adapting to a terminal diagnosis. It is hard to read On Death and Dying without being impressed by how judgmental it is. One of these judgments is that there is an emotionally correct way to die that crosses generations, classes, and cultural groupings. While Kubler-Ross is a physician, it is important for our purposes to note that she makes her critique largely outside professional domains and her appeals are directed as much at patients and families, who should demand better, as at health professionals, who should know better. Her account, in fact, emphasizes the obstacles medical staff placed in front of her work.

As described earlier, the hospital staff responded with great resistance, at times overt hostility, to our seminar. At the beginning, it was almost impossible to get permission from the attending staff to interview one of their patients. Residents were more difficult to approach than interns, the latter more resistant than externs or medical students. It appeared the more training a physician had, the less he was ready to become involved in this type of work.

A few years after the public discussion on the significance of the fact that public discussion of death and dying was no longer taboo, which Kubler-Ross's work in part fueled, a series of media-intensive "right to die" cases emerged, the most important of which was that of Karen Anne Quinlan. Besides the enormous amount of coverage and, hence, collective awareness of ethical dilemmas in modern medicine the case generated, two features of it are worth noting here. First, this was not a conflict that could be resolved within the normal doctor-patient relationship. Even if Karen Anne's physicians agreed with her parents' decision to disconnect her respirator, they felt the need for legal protection and approval before embarking on this course. The structure of the legal process made Karen Anne Quinlan's parents and her physicians adversaries, which clearly showed that both the nature and the pace of this process rendered it inadequate for resolving conflict in instant cases. A considerable amount of the commentary on the case as it unfolded centered on why we are, as a collectivity, trying to solve this problem in this way. Second, this structural impasse did not escape the New Jersey Supreme Court, which, while seeing the right to die as a privacy issue, nonetheless recommended that hospitals use ethics committees to resolve such problems and thereby keep them out of the courts. Such a policy, when followed, makes private decisions more public and requires individuals willing to claim expertise in ethical decision making. It assumes as well that such expertise will serve to silence social conflict. And, to the social scientist, this expectation-that an ethics process internalized within the hospital will reduce conflict-may be the feature of clinical ethics most worth exploring.

As with death and dying, in the domain of research ethics much of the criticism made within medicine was made from outside of medicine. Two research projects in particular received considerable media attention. Both involved the exploitation of vulnerable populations in federally sponsored research. The first was the infamous Tuskegee Syphilis Study. This "natural history" of untreated syphilis in black males involved researchers actively preventing subjects who were poor black sharecroppers from receiving medical treatments. The subjects were never informed that they were in a research project that forbade treatment. The second project involved the injecting of retarded children at Willowbrook, a residential treatment center, with Hepatitis B in order to test a vaccine. As in Tuskegee, consent was forgone. These research abuses were not discovered by the medical profession. Rather, the fact that they were uncovered by journalists and were then the subject of legislative hearings was taken as evidence of the failure of internal reform. Those outside of medicine confronting these abuses felt, unlike Beecher, that if these ethical problems of medicine were to be faced, it would be because of pressure and resources brought from the outside. Moreover, and this seems odd in today's antiregulatory atmosphere, such outside scrutiny fit the temper of the times. There was something like a national consensus that institutional domains, such as medical practice and research, could be made more accountable only through a greater surveillance of their activities. In this spirit, medicine was one of many institutional domains subject to the antiseptic and disinfectant effects of the sunshine of public surveillance.

And, in a manner of speaking, the problems of deceitful research were faced from the outside. A National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was formed, which promulgated regulations after holding hearings and deliberations. These regulations, when adopted, required that all institutions receiving federal funds have institutional review boards in place to monitor research protocols for the adequacy of consent procedures and of risk-benefit ratios. The National Commission was followed in a few years' time by a President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Whatever else may be said of the work of the President's Commission, and the National Commission before it, at a very minimum each legitimated public discourse by nonmedical experts on problematic areas of medical practice and research. The doctor-patient relationship was now very much a public concern. The documents that the President's Commission produced serve either as informal national practice guidelines or, less grandly, as a baseline for public debate and discussion. The most recent legitimating event for bioethics has been the appointment of a permanent National Bioethics Advisory Commission. What is significant here, and in each of the preceding moves, is the public approval given to the idea that what is wrong with health care is somehow connected to ethics and that such problems are best fixed by ethicists. The entire nature of the debate inside and outside the profession has acted either to squeeze other definitions of the problems outside the arena of discourse or to force other critics to frame their critiques in terms set by bioethics and bioethicists.

(Continues...)

Excerpted from WHAT WOULD YOU DO?by CHARLES L. BOSK Copyright © 2008 by The University of Chicago. Excerpted by permission.
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