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Copyright (c) 2002 by the University of North Carolina Press. All rights reserved.




Chapter 1
November 1994

I am a faculty member in a unit called the Center for Ethics and Humanities in the Life Sciences (CEHLS). The awkwardness of the center's title reflects the uncertainty felt everywhere in the field—the field that for convenience I call bioethics[1]—about how to name it, how to describe what unifies work done by people from disparate backgrounds in a set of loosely related tasks. At the moment, for instance, the people I work with include philosophers, social scientists, physicians, nurses, a medievalist, a lawyer, and a priest. (A number of these people wear more than one hat.) Some have official appointments with CEHLS, but others are affiliated only in the sense that they and we work together on various projects. The projects, too, vary widely; they might concern our home institution (Michigan State University), local hospitals, the state legislature, or still wider arenas.

This book is, in part, an attempt to provide a unifying framework for all this. Its origins lie in a paper I wrote some years ago for Ron Carson and Chester Burns, who had invited me and a number of others in the field to a working conference in Galveston, Texas.[2] Because the conference marked a number of anniversaries, Carson and Burns asked participants to reflect on the progress of the field, to reflect upon their own careers, to think about the way the field had changed, lived up to its promise or failed to, met its goals or changed them. Although the conference officially focused on philosophy and medicine, inevitably the participants came from a wider set of backgrounds; furthermore, they had been deliberately chosen to represent various career paths and stages. I accepted with enthusiasm, partly for the chance to work out some ideas, partly for the chance to go back to Galveston. My life in bioethics had essentially begun there, during a six-month fellowship in 1990, when I first learned the pleasure of applying philosophy directly to life, and the freedom of working in an interdisciplinary context. I was eager to return.

True to its origins in the Galveston conference and to the character of the center in which I work, this book speaks in a variety of voices: personal reflection, allegory, moral argument, and philosophical analysis. It includes a variety of voices in a more literal sense as well; soon after writing the paper for the Galveston conference, I set out to talk with others in bioethics and the medical humanities, as many people and as differently situated as possible. I asked them what they did and what they thought about what they did, and their comments are an important part of this book.

In that now-distant November, however, I was still reflecting only on my own activities. The paper I wrote for Ron and Chester began with personal reflection, a description of one week in my professional life. Although the week of November 7, 1994, was typical in some ways, it also provided a unique focus for my paper: November 7 was election day, the off-year election following Bill Clinton's victory in 1992. In 1994 the Republicans swept into power, taking control of both houses of Congress. More personal, a difficult ethics consultation suddenly brought into focus how different my job now was from the traditional academic posts I had once held. So a number of themes, public and personal, converged.

The Week of November 7 A distinctive feature of our work in CEHLS is the amount of driving it demands. We serve two medical schools (since one is osteopathic, we refer to the other as allopathic), both part of MSU's enormous single campus, but there is no university hospital. Our medical students spend their first two years (what are called the classroom years) on campus, and then move for clinical training to community hospitals in the city and around the state. In addition, given the size of the East Lansing campus (thousands of acres), we often drive even to committee meetings or the library, more than a mile from our offices. So that week found me frequently in my car, darting around the campus and the city. And the week provided (as my time in Galveston had taught me to expect) many different ways to learn: reading, of course, but also listening, watching, and interacting. It also provided a variety of ways to act. On Monday the phone rang almost as soon as I arrived at my desk. Could I lead an ethics consult at a Lansing hospital at eleven o'clock? Someone else had done the initial work: received the physician's request, decided that it presented an ethical issue, decided the team should meet with the patient's daughter without the doctor, and arranged the time and place. My caller gave a brief overview of the situation, to which I listened with interest but detachment; I had learned before that the first, thumbnail sketch of these cases, usually a third-hand description, is not too useful. The real story is always more complex, and sometimes the real issue is different from what it seems at first. In this case I was told that a stroke patient's daughter was fighting the doctor over tube feeding, which she did not believe should be started.

I walked into the meeting room to find the daughter, whom I'll call Catherine Bactri, in tears, and being comforted by another person from the consultation team. A third member joined us, reporting that the patient had been told of the consult and demanded to be included. I felt we needed to talk with Catherine and with one another first, a decision about which I later had second thoughts. At any rate, we sat down with Catherine, a middle-aged woman, divorced, an only child, facing her mother's illness alone while holding down a full-time job. Her mother, whom I'll call Geneva Bactri, was eighty-eight and recovering from a stroke. The extent to which she would recover was unclear, and without a gastrostomy (a tube that allows food to be put directly into the stomach, through an opening in the abdominal wall) she would probably die soon. She often lapsed into unarousable sleep, but at times awoke and seemed to know what was going on. At those times she was adamant: "No gastrostomy. No stomach tube."

Everything about this situation was familiar: the issue (refusal of treatment); the process (we listened, we talked; we asked about how Mrs. Bactri had lived her life and what she had said she wanted); and the resolution (a patient or her surrogate has a right to refuse treatment, even when the refusal shortens her life). Catherine Bactri was frustrated and exhausted when we started: "I'm only trying to do what I always promised my mother I would." We listened with attention and respect, and when she burst out that the attending physician "made her feel terrible," reminded her quietly that she was free to change doctors. By the end of the meeting she was calm; she had been heard. Both the meeting and the report I wrote up were satisfying.

As I composed our report, I realized that as a graduate student in philosophy I would have been astonished to know that twenty years later I would be writing a report for a hospital chart. I also found myself wondering about what we had accomplished, and about the cost. Consultations are a slow and expensive process. Four professional people—doctor, nurse, philosopher, and biochemist—had each spent several hours on the case. If the doctor listened to us, Mrs. Bactri's life would probably be shortened slightly: a few months, perhaps, less than 1 percent of her eighty-eight years. That amount of time in itself, gained or lost, did not seem significant. On the other hand, Mrs. Bactri's daughter felt far better after the consultation, and perhaps that was the significant result. The physician probably felt more comfortable, too. I didn't know if he had asked for the consultation because he thought it would protect him legally, or because he was genuinely uncertain about the right thing to do; both motivations are common. In either case, I felt uneasy. On the one hand, the issues were not ethically complex, and the physician should have been able to sort things out for himself; on the other, he should not be using an ethics consultation as a form of legal protection. I worried, too, that we were making it easier for the doctor not to take the time really to talk with Catherine Bactri. I was somewhat consoled by the young family physician (an MSU graduate) who helped with the consultation; her unhurried, respectful attention to the patient was a model of what we try to teach.

Once back in my office, after this unscheduled three hours away, I turned to my own writing. Ten years before, I had been writing an article about the moral status of actions that affect no one except the doer, using technical tools from analytic philosophy. I submitted it to a number of philosophy journals, appreciated or resented the reviewers' comments, and eventually published it. I was unsure whether or not anyone had ever read it. This Monday, however, my topic was very small premature babies. I had been asked to write the piece for one of the newsletters my center publishes, and I knew first, that no referee would pass judgment on it, and second, that it would be printed and it would be read. It was less careful and less technical than what I was used to doing and not at all original—but it would probably make a difference in what people did.

The next day, election day, began for me with an 8:00 a.m. undergraduate bioethics class. I had taught undergraduate philosophy for almost twenty years before coming to MSU, but did so much less frequently now. Since teaching can be intensely rewarding but also deeply painful, I was grateful that other activities now buffered my engagements in the classroom.

On that Tuesday I needed all the buffering I could get. Our topic was justice and health care, and at the end of class I asked each student to write some question he or she thought the class had left unanswered. About a fourth of them wrote, roughly, "Why should people who make good money pay for health care for those who don't?" Two weeks later they handed in papers on a scarce-resource issue: if there is only one kidney available but two people need it, how should we choose? Virtually everyone argued that the single kidney should go to "Mrs. Benson" rather than to the unidentified accident victim: if it goes to Mrs. Benson we know it's going to someone worthy. The danger of rewarding someone undeserving loomed large for them; they would not take that risk. One wrote with stunning if unconscious cruelty that "the poor have worse outcomes, so treating the affluent is a better investment."

The ease with which they wrote such things, their unawareness of competing arguments and of a need to defend their own, exposed my failure. But the positions they took also said a lot about public opinion, particularly that of white suburban Michigan. I knew already what the day's election would bring—the polls were clear—and the student papers I was reading underscored the public mood.

So I welcomed the chance to get away, to drive across town for an IRB meeting. An IRB is an Institutional Review Board, responsible for protecting human subjects of scientific research. This particular board was part of the Michigan Department of Public Health. New to the committee, I had to get a sense of who the other members were, what the acronyms and jargon meant, what procedures people were used to. Handed a thick sheaf of government regulations, I appreciated, grudgingly, some of the resentment voters were taking into the booths that day. Afterward someone from the substance-abuse program lingered. Especially aware that day of hostility toward the government, I asked her whether she minded being called a "bureaucrat." No, she said; she was used to it, and believed that mid-level civil servants are advocates for the people in a way that no one else can be. My experiences with public health nurses and with community mental health workers inclined me to agree. Neither of us dreamed that the following spring hundreds of people would die in Oklahoma City, their only sin the fact that they worked for the government.

I drove back into town to meet with a hospital ethics committee. We were examining a draft of a policy on "Do Not Resuscitate" orders; it encouraged doctors to talk with their patients and tried to protect the wishes of incompetent patients even when their families have contrary wishes. This is a strong, mature hospital ethics committee, and I've learned a lot from them. That day, however, the committee was wrestling with the concept of futility, an idea that sounds perfectly clear until you try to pin it down. It had already generated a lot of academic writing, some helpful, some not. The committee was friendly but not entirely convinced when I insisted that the concept is too muddy to use, and that adding the adjective "medical" does not help. We struggled with language and promised to continue the conversation.

Finally home, I refused to watch the election results; tomorrow would be soon enough. Instead, I picked up an issue of the Journal of Philosophy, one of my few remaining efforts to keep up with mainstream philosophy. Confused in mid-page, I started again, and found that I had read the word "epistemology" as "epidemiology." Finally anchored in a familiar conceptual world, more abstract than anything I had dealt with all day, I read a discussion of contextualism that was a pleasure and a revelation. Charges that "We must contextualize!" are used widely, often vaguely and sometimes self-righteously throughout bioethics; here I found it distinguished from a related concept (coherentism) and defended with vigor and precision.[3]

The next morning, Wednesday, I finally tuned in the election results. At the time, they seemed from my point of view worse than I could have imagined. I tried to remember whether I felt as badly in 1972, or in 1980, but couldn't really recall. What bothered me most in what I heard was the anger and punitiveness. Political conservatism, as such, need have nothing to do with hatred of anyone, let alone of the poor; a fierce belief in individual liberty could be combined with an equally intense compassion. Principled attacks on taxation could be joined with vigorous calls for private charity. In Grand Rapids, for example, a city where conservative religion is powerful, a newspaper covered the death of a corporate executive by describing first, and at length, the man's civic spirit. His position in the business world was described three paragraphs down. Similarly, a single mother I know was urged by her Grand Rapids employer to keep in touch with her mother in India, and to call her from work so the company could pay for it. "When your children need you," he went on, "go home; we'll work around it." For many reasons, I don't in the end think private charity is enough, but it is important, admirable, and fully consistent with conservatism.

The public voice of conservatism in November 1994 was quite different. As political theorists point out, "safety net" welfare provisions isolate and stigmatize those who do not succeed, in a way that socialist and true welfare states do not. The language of that campaign showed exactly that stigmatization.

By Thursday the implications of the election had begun to unfold. For some (certainly not all) of what had happened I blamed the press, who seemed to lack much ability to reflect upon themselves. How welcome a journalism ethics movement would be. But the forces that gave birth to bioethics twenty-five years ago—technology forcing dramatically new choices, the civil rights movement, a set of scandals—have no analog in journalism. Its new technologies (computers, satellite dishes, the internet, and so on) do not force hard questions as kidney transplantation did, nor they do add weeks or years of misery to people's lives as ventilators and gastrostomies sometimes do. I cannot imagine, offhand, what social forces would lead the media to the sustained, public self-examination in which health-care professionals engage.

For that matter, I thought, I don't know what would lead universities to do so, either. My first project that morning was to develop a panel on academic ethics,[4] to be called "Devouring Our Young: The Mistreatment of Job Applicants, Part-Timers, and Junior Faculty." The panel addressed the way academics treat one another, rather than how we treat students, and that gave me pause. Bioethics, in contrast, has always focused primarily on how patients are treated, and rightly so. As the newly elected legislators promised to support higher education, I listened with mixed feelings. Like journalists, professors need to be considerably more self-critical. The most fundamental questions in higher education, I would argue, are about how many people should go to college, and why; perhaps we should close a significant number of colleges and universities, and put the money into primary and secondary education. Perhaps not. But there is no one positioned to raise the questions, and many to defend the status quo. Here as everywhere the questions that are actually asked are only a fraction of those that could be, and the difference is often a result of the distribution of social power.[5]

That point suggests the persistent criticisms of bioethics for its attention to individual cases and practitioners rather than to the social structures that distribute power. The criticism had never seemed fair to me. One need only recall the evolution of questions about kidney allocation, an issue with which the field began. A truly individualistic discussion would have remained at the level of individual choices: whether Mrs. Benson or the unidentified trauma victim deserved the single kidney. In fact, however, the discussion quickly moved on; the appropriateness of deciding on the grounds of social worth was soon questioned, and public policy almost everywhere came to forbid it (in theory, at least, and usually in practice). Questions of whether organs should be for sale, and of whether one's body should be considered property, soon developed. These are not questions about how one individual should solve one problem. All of us in the field help develop policy, from DNR policies in a hospital through fetal tissue guidelines in federal research.

One of my MSU colleagues, Leonard Fleck, has devoted his professional life to issues of justice. In 1994 his focus was the possibility of national health insurance. His work on such questions, moreover, has led him to develop a technique for working with audiences that he hopes will launch a more sophisticated public discourse on health policy. (One of my painful realizations in 1994 was that health care had played no part in anyone's election campaign that year. It was the first time I recognized that the Clinton health-care proposal of 1992 had truly and completely failed.) During the week I'm remembering, two of my colleagues planned a workshop with a major managed-care health system in Detroit. A few weeks later the Hastings Center Report would feature an article entitled "The Ethical Life of Health Care Organizations."[6] I concluded that the atomism of bioethics is vastly overestimated.

A colleague dropped by with brochures for the London course we teach each summer. (I had taken my turn the preceding summer.) An interdisciplinary class, its highlight is observation of English health-care professionals as they work. An early assigned reading, however, from the sociology of health, argues that health care doesn't make much difference; it is poverty and affluence that most affect morbidity and mortality.[7] In spite of much lower per capita spending on health care, and facilities that are often worn and shabby, health statistics in the United Kingdom are not very different from those in the United States. And in spite of quite an egalitarian health-care system, the health of the rich is far better than that of the poor.

With my summer in London vividly recalled, I began to write a review of David Hilfiker's Not All of Us Are Saints.[8] Again, I was writing for a regional newsletter, and I kept in mind Detroit physicians who might appreciate Dr. Hilfiker's "journey with the poor." In London's East End we had seen the poorest neighborhoods in the United Kingdom; yet I saw nothing like the devastation that exists in parts of Detroit. London poverty is nonetheless real, and I recognized its connection with sickness. One diabetic woman, for instance, wore tattered, narrow shoes, relics of a fashionable youth, but now a danger because they restricted the circulation of blood to her feet. Diabetics have a higher risk of gangrene and amputation, and her shoes increased her risk. In contrast, Hilfiker describes a diabetic who sleeps on a Washington street and gets frost-bitten; he is a homeless man who cannot wash his wounds, cannot refrigerate his insulin. The English woman and the American man are both in danger of gangrene and amputation, but his danger is more severe. Even if we had national health care, he would still be sleeping on the streets. His risk of amputation would still be greater than hers.

Suddenly all these things fit together, like pieces of a jigsaw puzzle. Yes, it matters whether we are asking the right questions; on the other hand, no, bioethics does not confine itself to the separate choices made by individuals. What bioethicists do, however, and however unintentionally, is to divert attention from the most serious health problem in the country, and one of the most serious moral problems: the grinding, killing poverty in which our underclass lives.

The next day, Friday, my day began with a meeting with Libby Bogdan-Lovis, an M.A. candidate in our Interdisciplinary Program in Health and Humanities. A childbirth educator, she believes that birth should ordinarily take place at home, and has data showing it to be safer. She wants to understand why birth in the United States constantly becomes more high-tech, more interventionist, more—she would say—brutal. Once again I remembered London, and a talk I heard toward the end of the course from Marjorie Tew. Then close to eighty, Ms. Tew was a statistician and, as she pointed out, about as neutrally positioned as possible on the issue of medicalized birth. She is not a doctor, not a midwife, and many years past her own childbearing. When she set out decades ago to find the data connecting improved perinatal rates with health care, she found none; she finally concluded that in childbirth, as in so much else, most of the credit for better outcomes should go not to medicine but to improved standards of living. (Nutrition is especially important. Rickets, for instance, deforms pelvises and makes normal delivery difficult.)

Thanks to Libby and others, my standard public presentation about what most in the field call "maternal-fetal conflict" now begins with the story of a laboring woman who locked herself into her hospital bathroom. She wanted a nonmedicalized birth, had negotiated for this plan with her obstetrician, and thought everyone concerned had agreed. In local labor and delivery suites, though, an intravenous line is routine, and the woman could find no other way to fend it off than to barricade herself. "Maternal-fetal conflict" is a bad name for a complex issue. What is ordinarily at issue is a disagreement between a pregnant woman and a health-care professional, both of whom care very much about the baby's welfare. The standard label, however, assumes a conflict between a woman and her baby, between the fetus's safety and her rights over her body. In the bioethics textbook I was using in 1994, only one article mentioned, and that in passing, a crucial case in which a woman whose baby was "certain to die" unless she had a cesarean section nevertheless delivered, vaginally, a perfectly healthy child. The author does not realize that this is a common outcome (in the few cases where the woman was able to avoid the intervention and where we know what happened). I know it because of having read work in medical anthropology—and from Libby, Marjorie Tew, and the British general practitioner with whom we worked in London.

Again, I realized that bioethicists tend to ask the wrong questions, or, more precise, not to ask some that are essential. It does matter whether a woman's rights over her body outweigh the claims of her fetus, the central issue in standard discussions of "maternal-fetal conflict," but it also matters that the predictions of doctors about harm to the fetus are unreliable. It matters, in part, because the moral conflict is less severe when it is less certain that the fetus is in danger. But it matters more deeply because the conventional account, omitting iatrogenic harm, not only exaggerates the role of medicine in saving lives but glosses over the unnecessary surgeries, episiotomies, hospital-based infections, and so on that result when birth is medicalized.

My point is not that medicine can do damage. Whether a woman gives birth at home or in the hospital, she and her baby are likely to be fine. My point is, rather, a broadening of my earlier thesis. Just as bioethics can divert attention from issues like poverty—death-dealing poverty—it can inflate the role of medicine in good health. We don't usually say that access to doctors is the most important factor in health and happiness, although on certain subjects, like prenatal care, we often assume it. The deeper point is that bioethics is newsworthy; we get calls from the media, invitations to speak, very often on questions of what doctors should do, and attention to us intensifies attention to health care, which comes to seem more important to well-being than it is.

On the other hand, all that attention, that ease of access to the media, means that we have a bully pulpit. I thought in 1994 that if I continued to give a voice to those who oppose medicalized childbirth, I would reach more people than Libby and her network could. I also thought that if bioethicists decided to pay more attention to poverty, we would have some chance of being heard.

My work week continued through Saturday and ended with what I still think of as the consult from hell. Many people were involved, most of them unpleasant, and they were filled with anger at one another. The issue was whether the parents should be allowed to choose certain risks for their child. Parents and attending physician were on one side, a specialist on the other, and the onlookers—a lawyer friend of the family and an official from the insurance company—remained inscrutable. I donned a red blazer, trying to remember whether or not it counted as a power suit, and almost immediately I realized that we should not have met at all without much more preparation. I could do nothing to facilitate respect, communication, or emotional processing. I acted like a judge and wrote an opinion like a judge's. Afterward I was anxious for days, worried about whether the child would live, knowing that what I wrote made his death more likely. Doctors live with this responsibility all the time, and in that week their burden became more real to me.

Philosophically, I found the case thought provoking. Standard terms like "best interests," "risks and benefits," did not seem completely adequate. I realized we need a vocabulary about possible futures and steps that start us on one path rather than another. The language of risk, strictly speaking, will do the job, but "risk" is a reifying and static word. We need something that suggests more explicitly a sequence of events, each stage having burdens and benefits, each choice making the following ones more or less likely. The specialist in this case described the parents as willing to risk their child's life rather than to have minor surgery. But the boy will have nothing like a normal life span in any case, and the parents did not trust the only surgeon available. They preferred to chance an earlier death for their son than set out on what could, in retrospect, have been a futile path full of botched interventions.

The human elements were even more striking than the philosophical ones. One of my team members mused a few days later, "No one felt better when that consult was over." She was right; no one did. At the time, I had never considered "Participants felt much relieved" as a measure of an ethics consult's success. But on the day of that conversation I decided it was a necessary (though obviously not a sufficient) condition of having done well.[9]

At that point I realized how different my professional life had become. What I was doing in 1994 was not just different in degree from what I had done in 1984; it was different in kind. Ethics consultation, serving on IRBs, writing for practitioners rather than academics, and teaching medical students all demanded new knowledge (not of philosophy but of health care), drew upon new skills (especially interactional), and served different purposes (improving hospital policy, preventing the abuse of human subjects in research, relieving conflict over the care of a patient). I had joined a new field.

But Is It Philosophy?
After describing that week of November 7, the paper I wrote went on to raise questions that this book is an attempt to answer. At the symposium where I first presented the paper, in February 1995, it generated considerable controversy. Some questioned whether it counted as philosophy. My response was that I didn't particularly care, an impolitic remark during a conference honoring a book series called Medicine and Philosophy. I would not make the comment so casually today, but I would make it with years' more conviction. Part of the point of this book is to argue that bioethics is not a subset of philosophy, although it is well and uniquely fed by that discipline.