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Bioethics as Practice
By Judith Andre University of North Carolina Press
Copyright © 2002 The University of North Carolina Press
All right reserved. ISBN: 0807827339
Chapter One
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-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. Because the conference marked a number of anniversaries, Carson and Burns askedparticipants 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.
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.
Continues...
Excerpted from Bioethics as Practice by Judith Andre Copyright © 2002 by The University of North Carolina Press
Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
