Even among the 38 low-volume hospitals there was a significant linear monotonic relationship between volume and mortality. The 38 hospitals were divided into four groups based on the frequency with which they had performed the procedure. Twenty hospitals had performed a total of 1-5 Whipple procedures between 1988 and 1993, 9 hospitals had performed 6-9, 6 hospitals had performed 11-15, and 3 hospitals had performed 16-20. Their respective in-hospital mortality rates were 19.1%, 14.3%, 13.0%, and 8.9%.

Thus among the 20 hospitals in Maryland (more than half the total number of hospitals) that performed only between 1 and 5 procedures, the chance of dying in the hospital was almost 9 times greater than at JHH (19.1% vs. 2.2%). This represents almost a one-in-five versus a one-in-fifty chance of dying. Even among the four hospitals that performed 16-20 procedures, the chance of dying was four times greater than at JHH (8.9% vs. 2.2%).

These are substantial differences, not merely statistically significant differences of limited practical importance. Unless they had strong reasons for not doing so, any person trying to make a rational decision about treatment would choose to have the Whipple performed at JHH rather than at a local, low-volume Maryland hospital. Absent such reasons, it would be seriously irrational to choose to have the surgery in a low-volume setting. And of course there is no reason to believe that this volume-outcome relationship in performing Whipple procedures is limited to Maryland.7

Studies have been emerging with regularity in recent years showing similar volume-outcome relationships with respect to other surgical procedures and medical treatments.8 Most if not all of these studies have produced information that rational patients making decisions about treatment would want to know if they realized that it existed. Thus they satisfy the "rational person would want to know" criterion and yet, so far as we know, no official medical group has suggested that physicians have a duty to learn this information so that they can disclose it to involved patients. We believe that at a minimum specialists in a field do have a duty to learn and to disclose volume-outcome information.

2. Geographical variation studies. A related but conceptually distinct body of research has consistently shown large differences in the frequency with which certain surgical procedures and medical treatments are performed in different geographical areas of similar demographic characteristics. The phenomenon is especially apparent in the so-called "discretionary" procedures (for example, carotid endarterectomy, radical prostatectomy, and back surgery). Relatively "non-discretionary" procedures (for example, colon resection for colorectal cancer, cholecystectomy, and hip fracture repair) show less geographical variation.9

The magnitude of these geographical differences is often large: a 6-fold to 10-fold difference in incidence between closely matched areas is commonly seen. For example small-area variation studies in New Hampshire, Maine, and Iowa showed that among different areas closely matched for demographic characteristics there were broad variations. In one area only 20% of women, by the age of 70, had a hysterectomy; in a matched geographical area, 70% had one by that age. Similarly, in one area, by age 85, only 15% of men had a prostatectomy; in a matched area, 60% had one. In another study it was found that among women with early breast cancer who, according to practice guidelines, could reasonably choose either to have a lumpectomy or a radical resection, there was wide geographical variation in the choices made. The extremes: in one small town, 48% of women had lumpectomies and 52% had radical mastectomies; in a closely matched small town, only 1.4% of women had lumpectomies while the remaining 98.6% had radical mastectomies.

The reason for these geographical differences is not entirely clear. Chance variation can be shown to cause no more, at most, than a very small part of the differences observed.10 An unlikely explanation for the discrepancies seen between different areas is that they reflect a difference in what patients in the different localities, adequately informed, would actually prefer. It seems extraordinarily unlikely that half of adequately informed women in one geographical area would opt for a breast-sparing lumpectomy while almost none of the women in a closely matched area would make the same choice. The women’s "choices" are almost certainly reflecting their doctors’ "recommendations."

The most likely explanation is that the differences represent different professional practice patterns that have evolved in different localities. The procedures that show the greatest variation may be those procedures in which it usually would be rational either to consent to the surgery or to refuse it (or to have a mastectomy vs. have a lumpectomy, etc.), as the term "discretionary" implies. However although both choices may be rational, particular individuals, adequately informed, may nonetheless strongly prefer one to the other if they knew that such a choice was often chosen by patients in other localities. Thus, they should be provided with full comparative information so that they can make the choice dictated by their personal values.

Rational persons would often want to know about geographical variation data. A woman with breast cancer, whose gynecologist was urging her to have a radical mastectomy, might be quite interested to know that in her city such operations were carried out 34 times (48% vs. 1.4%) more frequently than in a neighboring city, with no known difference in the nature and incidence of breast disease between the two locales. These data would not mean that it would be irrational for her to have a radical mastectomy in these circumstances, but she might be motivated to consider the lumpectomy option especially seriously if she realized that in a neighboring locale it was chosen much more frequently than in your locale. However, despite the pertinence of geographical variation data, few doctors include data about geographical variations during the consent process. Here too, as these data become increasingly available, specialist physicians have a duty to learn about them and disclose them to their patients.

3. Number needed to treat measures. As noted above there is widespread agreement that physicians should tell patients, as part of the consent process, the expected efficacy of any treatment that they are suggesting. There are several ways in which physicians can impart information about efficacy; some are relatively uninformative or even misleading, while others are more useful.11

One way in which a physician can describe efficacy is to assure the patient that the treatment has been found to be effective in research studies. While this may be true it communicates relatively little information. If experimental studies are conducted with large groups of subjects it is possible to achieve statistically significant differences between experimental and control groups that are based on relatively small mean differences in efficacy. Thus while a suggested treatment may be statistically superior to doing nothing, or to employing some older treatment, the degree of superiority may not be large in absolute terms. Whether an adequately informed patient would elect the suggested treatment might depend on many factors: the absolute degree of superiority of the suggested treatment, its cost and side effects, the noxiousness of simply continuing to have the disease (for example, some version of "watchful waiting" in mild to moderate prostatism), and so forth.

A second common way of describing efficacy is to use relative frequency data: "this drug will cut your chance of having a heart attack by 50%." This is a kind of efficacy description not only used by some doctors but also by many journalists. It can make a treatment sound more remarkable than in fact it is. For example suppose a treatment is expensive and has many unpleasant side effects. Suppose further that without the treatment the patient has a 1 in 100 chance of having a heart attack over the next five years but that with the treatment the rate is cut to 1 in 200. That would be a 50% reduction but it might not impress some patients, who might think the five-year bother and unpleasantness associated with the treatment outweighs the rather small gain the treatment confers. Thus telling patients only about relative risk reduction gives them incomplete information and in many cases is actually misleading.

There is an alternative statistic that has become more widely used in recent years, called the Number Needed to Treat (NNT). The NNT tells how many persons need to be subjected to a treatment before one person would benefit from the treatment who otherwise would not have benefited. The lowest possible NNT would be 1, if there were a treatment that benefited everyone who took it and no one would receive that benefit who didn’t take the treatment. Some antimicrobials and some orthopedic procedures may approach an NNT of 1, but NNT’s this low are rare in medical or surgical practice.

The NNT is easily calculated. Here is an example: if 2/3 of all patients with a DSM-IV diagnosis of Major Depressive Episode improve significantly within two months of beginning to take antidepressant medication, while 1 out of 6 persons improve significantly without any medication, then:

• if 100 patients take the drug, 67 will recover,

• if 100 patients don’t take the drug, then 17 will recover,

• therefore the drug will benefit 50 patients who would not be benefited without the drug,

• thus 2 patients need to be treated in order to benefit 1 patient who would not otherwise be benefited (100/50). Thus the NNT is 2.

Here is another example, based on an actual study. A group of hypertensive patients took part in a randomized clinical trial studying the effect of a particular regimen of drugs on the frequency with which they experienced either heart attacks or strokes over a three-year period. It was found that 4.0% of the experimental group (the patients taking drugs) experienced a heart attack or stroke but that 9.8% of a control group (taking a placebo) had one of these maladies. What was the NNT? It can be calculated using the method shown above:

• if 100 patients take the drugs, 4 will have a heart attack or stroke,

• if 100 patients don’t take the drugs, 10 (rounding off) will ha1ve a heart attack or stroke,

• thus 6 persons will be benefited from the drugs who otherwise would not have been benefited (100/6). Thus the NNT is about 17.12

It would be possible for a physician, confronting a hypertensive patient, to describe these results in several ways. He might say simply, "These drugs have been shown in scientific studies to be effective and I recommend that you take them." Or he might use relative risk data and say, correctly, "These drugs will lower your risk of having a heart attack or stroke by 60%." (That is, going from 10 to 4 involves a 60% reduction.) Or he might say, "These drugs can be beneficial but not everyone is helped. If 17 people take the drugs, one person will avoid having a stroke or heart attack who otherwise would have had one. For 16 people it will not make any difference."

Consider the two statements, "These drugs reduce the risk by 60%," and, "Only one person in 17 who takes the drugs will be helped." To many persons these seem at first blush such disparate statements that they sound incompatible — as if they must be descriptions of two different drugs. This is because of the often misleading connotation engendered by relative risk data. This misleading connotation may arise from an unreflective and false assumption that the risk of having a stroke or heart attack is 100% and that the drugs reduce the risk to 40%. That would indeed be a powerful effect but of course that is a different situation than having a 10% risk that is lowered to a 4% risk. Unless the drugs were extremely unpleasant or dangerous, it might be irrational not to take them if they reduced the risk of stroke or heart attack from 100% to 40%. However not taking drugs (for three years) with an NNT of 17, especially if the drugs are expensive and/or accompanied by significant unpleasant side-effects, need not be irrational at all.

NNT’s are now rather widely available and even exist in lists that can be downloaded (and frequently updated) on to a hand-held computer that the physician can conveniently have with her at all times.13 NNT’s are also increasingly being reported as the key dependent variable measure in randomized clinical trials investigating the efficacy of medical treatments. Specialist physicians have a duty to learn about the NNT’s of those specialized treatments they prescribe and disclose them to their patients, along with more traditional kinds of information about harms and benefits.

4. Departure from Practice Guidelines. In recent years there been created many medical "Practice Guidelines." These are sets of recommendations about the best way to manage and treat various maladies; for example, the best way to treat an acute myocardial infarction, or a patient suffering from a manic episode. Usually the guidelines have been created by groups of specialists in a field who have relied on the best evidence that is available, from randomized clinical trials and from metanalyses of randomized clinical trials, about optimal treatment strategies.

The guidelines are meant to be prescriptive. The group writing the guidelines is claiming that the particular strategy outlined has been shown to be superior in its results to any other strategy that has been tried and studied in a particular clinical situation. However the guidelines are not meant to be absolute. Frequently there is good reason, based on the circumstances of a particular case, not to follow a particular guideline but to take some other action instead. The burden of proof is always on a physician who departs from a particular guideline to justify the departure, but departures are not only sometimes permissible, they are sometimes obligatory. Departures should not be capricious or based on inexplicable hunches: the physician making the departure must be willing to argue that in any future cases with relevantly similar characteristics to the case at hand, the guideline should be departed from in just this way. In fact some future, fuller edition of the Practice Guidelines might say not only: "Do X," but add as a corollary, "In case of Y, do not do X but instead do Z." The exception becomes a publicly defensible (sub)guideline itself.

Any rational person suffering from a condition for which there exists a professionally accepted set of Practice Guidelines would want to know about these guidelines. Because there is good research evidence that by following these guidelines her chances of recovery are greater than they would be if another treatment strategy were followed, she generally would want her physician follow these guidelines, However, she might want her physician to depart from the Guidelines if he were able to plausibly argue that the departure was justified.

There is now good research evidence that patients whose depression has been successfully alleviated by the use of antidepressant medication should continue to take the medication for four to six months after their mood has improved. If patients prematurely stop the medication soon after they feel better, there is a significant and non-trivial chance they will suffer a depressive relapse and need to take the medicine for another full course. This fact has been recognized for years and has been incorporated into the Practice Guidelines for treatment of Major Depressive Episodes that have been published by the American Psychiatric Association. Any psychiatrist who undertakes to treat depressive episodes should be aware of this fact and should explain to patients the reason for continuing the medication. A psychiatrist who does not follow this guideline and does not tell patients of its existence is subjecting his patients to the possibility of a good deal of avoidable future suffering. If the psychiatrist has some reason not to recommend that a patient continue with medication for several months after the patient’s depression has lifted, he should explain to the patient why he is making the recommendation that he is.

The existence of Practice Guidelines should not be kept a mystery to patients. In fact the content of the guidelines should be an essential and central part of the information given to the patient during the consent process. A cardiologist might say, "There is good evidence that you have suffered what appears to be a mild myocardial infarction, or heart attack. The set of treatments that I suggest we follow that has been shown to maximize the chances that you will make a good recovery from what has happened. They are, in fact, incorporated in the Practice Guidelines for treating your kind of case. These Guidelines have been developed by the leading experts in the field. Let me tell you about them. (Sometimes a physician might add, "Let me tell you why I think we should depart from them in this one aspect.") You can ask any questions you want about what I tell you."

Given the current existence of professionally-agreed upon, research-based guidelines, one might expect that physicians would know about them and follow them scrupulously and that patients would generally be informed of their existence. Neither expectation seems to be true.14 In fact Practice Guidelines are so commonly ignored that there is emerging a literature investigating the question of why this should be so.15 With respect to any specialist interventions they suggest, specialist physicians have an ethical duty to learn about and disclose the relevant Practice Guidelines to their patients and inform them when they are departing from these Guidelines and why they are doing so.

The Duty of Physicians to Learn and to Disclose

All physicians have an ethical duty to disclose to patients the first three kinds of information mentioned above: the significant harms and benefits that might follow the suggested intervention, the significant harms and benefits that might follow any plausible alternative intervention that could be employed, and the likely course of events if no intervention were used at all. The strong emphasis on the duty to disclose this information has resulted in less attention on the duty of physicians to know this information. No one doubts that, except in extraordinary circumstances, physicians should disclose to their patients all of the information that they have about the possible harms and benefits of the suggested treatment, alternative treatments and no treatments at all. However, although it is clear that physicians have a duty to know some information about these matters, it is not clear how much information they have a duty to know. It would be useful to establish some level of knowledge that would count as the minimum level required for specialists and primary care physicians to be competent.

The four additional kinds of information discussed above, volume-sensitivity, geographical variation, NNT’s, and Practice Guidelines, have the same status as the first three kinds. If physicians have this information they have a duty to disclose it to their patients, and they have a duty to know some of this information. Rational patients would want to know these additional kinds of information because they could significantly affect the outcome of their decision-making. We recognize that the four kinds of additional information are not always as available in the medical literature as are the first three kinds. However a great deal of information is already available, much of it obtainable on the internet, and it seems a safe prediction that before too long NNT’s and Practice Guidelines, for example, will exist for the vast majority of medical treatments.

For all of the treatments they suggest in their role as specialists, specialist physicians have a duty to know all of the available information of the four additional kinds. Knowing this information should be required of all competent specialist physicians. Having the same requirement for primary care physicians would put too heavy a burden on primary care physicians who suggest a wide variety of treatments for a multitude of ailments. It is appropriate to expect a competent urologist to know the Practice Guidelines for treating mild to moderate prostatism and the NNT for a transurethral resection of the prostate performed for that condition. However to expect a family physician to know these kinds of information about every condition he or she might encounter seems excessive. But the family physician should be expected to know some of this additional information. For example, any physician prescribing antidepressants should be expected to know that the drug should not be abruptly discontinued one week after symptomatic relief.

Perhaps specialty groups should themselves publish what they believe to be the level of knowledge and disclosure that should be obtained and carried out by primary care physicians who practice in a specialty area. For example, psychiatrists might decide that primary care physicians who treat depressive episodes need not know that the antidepressant drugs typically have an NNT of about 2 (especially because the NNT is so low and thus favorable) but should know the practice guideline about when to discontinue medication after a patient’s return to a relatively normal mood.

People writing about informed consent have concentrated on the duties of physicians to disclose all of the information that a reasonable patient would want to know. All physicians have the same duty to disclose everything they know that is relevant to rational patients’ decisions. It is not clear how much physicians have a duty to know about the information they would have a duty to disclose if they knew it. It also seems that not all physicians have a duty to know the same amount of this information. How much of this information a competent specialist should know, and how much a general practitioner should know are significant questions that have not yet been seriously considered. It is important that these questions be given serious consideration by specialty groups of physicians as well as by those who write in bioethics.

Endnotes

1. It is also necessary that no coercion be used in obtaining the patient’s consent, and that the patient be fully competent to consent. The precise meaning of the concepts of "coercion" and "competence" requires explication; see Gert, Bernard, Charles M. Culver, and K. Danner Clouser, Bioethics: A Return to Fundamentals. New York: Oxford University Press, 1997, Chapters 6 and 7.

2. See Gert, et al., op cit., pp. 152-156.

3. Canterbury v. Spence 464 Fed Rptr 2d 722 1972 DC.

4. This standard is in comparison with the "reasonable physician" standard, held by some courts, that the standard of disclosure should simply be what physicians generally do tell patients about the likely outcomes of a particular treatment.

5. Gordon, Toby A., et al. The effects of regionalization on cost and outcome for one general high-risk surgical procedure. Annals of Surgery, 221 (1995), 43-49.

6. Gordon, et al. op. cit.

7. At least two other studies have found similar volume-outcome relationships with the Whipple procedure: Birkmeyer, et al. Effect of hospital volume on in-hospital mortality with pancreaticoduodenectomy. Surgery, 1999, and Simunovic, et al. Relation between hospital surgical volume and outcome for pancreatic resection for neoplasm in a publicly funded health care system, Canadian Medical Association Journal, 1999.

8. For example, see Begg, et al. Impact of hospital volume on operative mortality for major cancer surgery, JAMA, 1998; Hannan, et al. Coronary angioplasty volume-outcome relationships for hospitals and cardiologists, JAMA, 1997; Lavernia & Guzman. Relationship of surgical volume to short-term mortality, morbidity, and hospital charges in arthroplasty, J Arthroplasty, 1995; Tu, Austin & Chan. Relationship between annual volume of patients treated by admitting physician and mortality after acute myocardial infarction, JAMA, 2001, 3116-3122, and others.

9. For an extensive summary of geographical variation data, see The Dartmouth Atlas of Health Care, 1999, Center for Evaluative Clinical Sciences, Dartmouth College. Also see Wennberg, John E. "Understanding geographic variations in health care delivery," NEJM, 1999, 340, 52-53.

10. It is easy to calculate confidence intervals for the observed differences and, since most of them are based on large groups, the probability that the difference is a chance phenomenon is extremely small. And of course there are many such observed differences so that the probability that all or any substantial proportion of them are due to chance is vanishingly small.

11. There is much anecdotal and some empirical evidence that physicians often do not even attempt to give information about efficacy, but simply "assign" a patient to a treatment. ("It looks like you have an enlarged prostate. Here’s what we’re going to have to do.") This simply abrogates the consent process.

12. A somewhat quicker but completely equivalent way of making the calculation is to realize that the NNT is the reciprocal of the absolute difference between the percentage outcomes of treatment vs. no treatment. Thus in the above example: 10 minus 4 equals 6; 100 divided by 6 equals about 17. (NNT’s are conventionally rounded off to the nearest whole number.)

13. See, for example, http://www.library.utoronto.ca/medicine/ebm/glossary/nnts.htm .

14. One of us teaches a didactic course on evidence-based medicine to Physician Assistant students immediately after their 12-months of clinical rotations in area clinics, hospitals, and medical practices. Most students say they have never heard the term "Practice Guideline" mentioned during their year-long exposure to 8-10 different physician preceptors and resident staffs.

15. See Cabana, et al. "Why don’t physicians follow clinical practice guidelines?" JAMA, 1999, 282, 1458-1465.

Medical Ethics is Whatever You Say It Is

Gregory Pence

University of Alabama, Birmingham

In what seems like yesterday but was actually a quarter-century ago, I was standing in the office of the Dean of Medicine in the huge medical complex that exists in Birmingham, Alabama. I had just been told that I would henceforth have a job on both sides of the campus, a regular one in the Philosophy Department and a special one in the School of Medicine, teaching 165 students a required course once a year in Medical Ethics.

I was happy, but not because I had entered an exciting new area of interdisciplinary study. Instead, I was happy because I had any job at all connected to Philosophy. During the previous year, I had come very close to having a career in real estate in New York City.

After getting my PhD in 1974 working under Raziel Abelson and Peter Singer (who visited for a year at NYU), I tried in vain for two years to secure a tenure track job. Failing to do so, I quit philosophy. (Looking back and at statistics, I now realize that the market was flooded with new PhD’s in those years.)

An unexpected opening brought me to Birmingham on January 1, 1976, when the Karen Quinlan case and trials were going on. The Dean of Medicine had been a philosophy major at Davidson and, partly because of the Quinlan case, thought that medical students should think about such issues before they practiced. So my position was created and I was hired.

After he offered me the job, I accepted and then asked, "By the way, a lot of people disagree about Medical Ethics. What do you think it is?" He laughed and responded, "It doesn’t matter what I think. From now on, it matters what YOU say. You’re going to teach the course and write the books. Good luck!"

That was not the whole truth by any means, but when it came to teaching the course, it wasn’t far off. There were no textbooks. My first year, readings were patched together from the Hastings Center Report, theology journals, JAMA, Time, and Philosophy and Public Affairs. Moreover, rather than embracing an exciting new area of interdisciplinary study, most medical students resented having to take another course (they didn’t know when they had it good: since then, four additional courses have been piled on them: medical history, nutrition, neuroscience, and soon, integrated problem solving),

During the early years, I longed for the safety of teaching traditional courses in Philosophy - at least my courses in graduate school had some relation to that! I sometimes longed for my office on the green side of campus — away from the hospitals, where for several months I did daily rounds in oncology and other specialties. What was most uncomfortable was not having a definite role to play in making these rounds (for I was there strictly as an observer, not to advise about ethics; I have never been an ethics consultant in a hospital, and based on my experiences in hospitals, never want to be one).

Until I taught in medical school or served on hospital committees, I had never realized the power a professor has in his mini-kingdom, his classroom, especially over the "serfs" who need one’s recommendation for medical or professional school. In a hospital or even a medical school, and especially in the early years, I often got the question, "What is a philosopher doing here?" I constantly felt I had to prove I belonged.

Over the years, I wrote a text (so I would have something to teach) and learned to like the constant challenges. Entirely unexpected issues kept arising, such as artificial hearts, AIDS, the Human Genome Project, and cloning. What I didn’t like doing was trudging over to the medical library, or badgering physician-friends, to try to quickly learn some new field.

I now think Medical Ethics is today’s most exciting academic field. I was very lucky to enter on the ground floor and to help create a field that so well matched my interests and personality. (I am not constitutionally suited to spending decades writing on criteria of justified true belief or on proving to skeptics why I am not a brain in a vat.)

The growth in courses in Bioethics in North America has been explosive. (I purposefully use the wider term "Bioethics" here rather than "Medical ethics" to include issues such as genetically-modified food and animal rights.) Each year, dozens of my medical and undergraduate students want to become bioethicists (some have done so). Their interest is both satisfying and alarming (can the world accommodate so many bioethicists?)

Last September, I attended the International Association of Bioethics meeting in London. What struck me was how Bioethics has spread across the globe and is being taught in colleges in places such as Saudi Arabia and Liberia. The meetings also taught me that new problems arise when one takes an international perspective, such as the costs of AIDS drugs and the protection of human rights.

In 1976, the quintessential bioethical issue was Death and Dying. (There were also some red herrings: psychosurgery, genetic engineering, and behavior control.) What no one could have predicted were the cultural shocks from Louise Brown’s in vitro fertilization and birth in 1978, from the failure of Roe v. Wade in 1973 to end the abortion debate, from the introduction of artificial hearts and xenografts, from the creation of hordes of homeless people from deinstitutionalization in the 1980s, from surrogate mothers, from the discovery of genes for clinical disease, from thirty years of failure to provide medical coverage for the uninsured, and from the underground prejudice against gays and lesbians that surfaced and continues with AIDS.

Extrapolating from the last quarter century, I know that the big issues of the next twenty five years will be unpredictable. Past experience would dictate that the big issues will be justice in medical coverage, AIDS, genetic discrimination, and expansion of parental choice about traits of children through new techniques in assisted reproduction.

But if the history of Bioethics shows anything, it is that the biggest issues ambush the field. As Larry Altman, the physician-reporter of the New York Times, said in a retrospective in July, 2001 — twenty years after the first public report of AIDS — in 1981 every physician thought that all infectious agents had been discovered. Altman wrote that then no one in medicine seriously considered the hypothesis that an entirely new, lethal agent had emerged.

Just as new infectious agents will emerge in medicine, so will entirely unexpected ethical issues. It is the nature of the beast. If you like to be challenged by unexpected issues (and to have reporters besieging you to take a stand almost instantly), bioethics is for you.

Of course, you can always play it safe and inveigh against each new change, citing the mantra of bioethicists, the slippery slope. You can imply that each new way of creating families endangers the traditional family. You can be cautious and side with the AMA on most moral issues, but who needs philosopher-ethicists for that?

It is more interesting to take some risks and to back changes you think are reasonable. In any case, and as I wrote in "Re-Creating Bioethics," medicine needs both "inside" and "outside" bioethicists — to understand its problems internally and to critique them externally.

Personally, I believe that philosophers who understand the facts about medicine and science will play an increasingly important role in public policy and in daily medical life, because no one else seems both willing and able to do so. If I am correct, then just as Philosophy spawned the separate, new field of Psychology a century ago, so one day we may look back and say the same about Bioethics.

Reflections of an Idealistic Pragmatist: On Moving from a Philosophy Department to a Clinical Setting Twenty Years Ago

Mary B. Mahowald

University of Chicago

I have been asked to write my "spontaneous reflections" about the "early days" of bioethics from the standpoint of a philosopher who moved to a clinical setting during that time. Whether in fact I was there in those "early days" depends on what counts as early. When I left a regular philosophy department to join a medical school faculty, the year was 1982. I recall thinking that Albert Jonsen, a well-known figure in bioethics, had already spent 7 years in a clinical setting, and that until/unless I had acquired comparable experience, my contributions to the field would be less informed and less creditable than his.

Why did I leave a philosophy department for a medical school/hospital setting? Like many women (and some men), my reasons had a great deal to do with other-than-professional priorities. I had three young children and an hour’s drive each way to work. Although my partner and I both liked our jobs, we could be attracted to positions requiring less travel time. When two universities offered us positions in which the commute would be considerably shorter, we chose the one we thought best for all of us. We welcomed the new professional challenges that we knew we would face.

Teaching elementary and junior high for ten years before I went to graduate school had convinced me that "doing" is a way of thinking as well as a way of behaving. The writings of John Dewey and Karl Marx had provided a philosophical foundation for this conviction: Dewey, through his insistence that philosophy be rooted in experience, and Marx through his critique of philosophy for having merely interpreted rather than changed the world. Moreover, like Plato’s Socrates, I thought (and continue to think) that philosophy belongs in the marketplace. A hospital setting was the marketplace that became available for me to "do" philosophy. (Some bioethicists, I soon learned, don’t take advantage of "marketplace" opportunities, preferring instead to "hang out" in offices in medical schools, ethics think-tanks, or philosophy departments where they talk to one another but have little or no contact with patients or actual cases).

Since my dissertation days, when I tracked the integration of philosophical idealism and pragmatism in American philosophy, I have considered myself "an idealistic pragmatist." Accordingly, I particularly enjoyed teaching ethical theory and applied or practical ethics. Some issues in medical ethics were particularly appealing because they arose in my own life (e.g., an unplanned pregnancy, complications of pregnancy, premature birth, decisions about prenatal testing). The fact that my life partner is a researcher in the biological sciences abetted my interest in these issues. After agreeing to teach a graduate course in the nursing school, I decided to prepare by spending the summer at various clinical settings, so that I could learn a little of what relevant cases looked like from the perspective of those involved in them.

As I moved to a medical school/hospital setting, I felt it important to maintain my identity as a philosopher by going to philosophy meetings, reading and publishing in philosophy journals, etc. — because it was from that background that I might contribute something unique to the clinical setting. At the same time, I was committed to "being there" with clinicians and patients. So when the Dean proposed that my primary appointment be in a mainstream clinical department (the community health department, in his view, was not mainstream), I chose pediatrics, with a secondary appointment in reproductive biology. Although I later I had an appointment in medicine as well, I felt (and still think) that issues involving women and children specifically were underaddressed.

Having earned tenure in philosophy before moving and obtaining tenure in my new position freed me from worrying about job stability; it also facilitated my acceptance by clinician colleagues. My office was adjacent to the pediatric intensive care unit, where I rounded every morning at 7:30 a.m. On a regular basis, I attended departmental faculty meetings, grand rounds, interdisciplinary meetings, and case management conferences. While I learned a great deal about clinical problems and perspectives through these activities, I think I also educated others through my presence; I now refer to this type of "work" by clinical ethicists as a pedagogy of presence.

By the end of my first year in a clinical setting, I had given grand rounds, started two ethics committees, developed course work in the medical school, and was increasingly called upon to discuss specific cases (formal and informal "consults"). Because I had become a familiar face to my clinician colleagues, they no longer viewed me as an ivory tower philosopher who had little or no understanding of the complexity of real cases. What I had to say was not necessarily different from what philosophers in regular departments might have said, but I had gained credibility that made some people more receptive than they might have been. Throughout my tenure at this institution, I continued to round in the intensive care unit and participate in numerous other clinical activities. Still, gaining and maintaining credibility through such extensive participation was very time consuming, leaving me little time for the academic reading and writing that I so enjoy. As the only philosopher "doing" medical ethics, I hoped for a philosopher colleague. Unfortunately, that was not to be.

Initially, the birth and death of Bloomington’s Baby Doe facilitated my work in the medical center. Baby Doe had Down syndrome and a surgically correctable but life-threatening obstruction in his esophagus. As a resident of Bloomington at the time, I knew most of the principals involved: the obstetrician (who was my obstetrician also), the pediatrician who challenged the surgeon’s decision not to operate on the infant, lawyers on both sides, the pathologist who examined the baby after he died, and the priest who baptized the infant. The publicity generated by the case had led to federal regulations requiring all government-supported nurseries and delivery suites to post signs describing failure to treat "handicapped" infants as illegal discrimination, and listing a "hot line" number to be called by anyone who observed such failure to treat. Experts appointed by the government would investigate reports of possible discrimination.

Not surprisingly, the neonatologists at my new institution wanted to avoid governmental intrusions if possible. Forming a hospital ethics committee was perceived as a means of addressing problematic ethical situations without governmental investigations prompted by hot line calls. I was identified as one who would facilitate the establishment of such a committee. Responding to this expectation, I found that an effective way of involving busy doctors in the ethics review process and in ethics education was to invite them to come and talk about their own experiences of cases involving ethical issues. In preparing for these presentations, some very high-powered clinicians read up on the topic and learned a great deal themselves. Over an 8-year period, no physician declined my invitation to "teach" members of the ethics committee or a class of medical students about a topic for which he or she had relevant expertise and experience. Only one person failed to show up after agreeing to come: a neurologist who was going to talk about definitions of death. In a phone call the night before the class, he apologized that he couldn’t make the class because he had to be in the state capital the next day for the governor’s announcement of his appointment to head the state’s Department of Health.

Once ensconced in the medical setting, I experienced a very different lifestyle and set of interactions than I was accustomed to in my previous position. Basically, I was expected to be at work every day, and there were no between-semester, Christmas, or summer breaks. It took a while to get used to the noise going on around my office, which was along a busy corridor, with patients, family members and clinicians, coming and going all the time. But the location itself was an education. One day, for example, I noticed a stretcher being pushed along the hall towards the operating room. There lay the pink faced figure of a robust-looking young man, about 17 or 18 years of age, his chest heaving with each breath that was apparently triggered by one of the many machines to which he was attached. A 5-year-old came out of the Play Room across from my office and looked up at the stretcher. "That’s my brother," he said. "He’s dead, and they’re taking him to surgery." That one so young could so clearly grasp what I had failed to recognize taught me what I could not have learned from articles or lectures. Through encounters such as these as well as my own ongoing involvement in cases, I have developed an extensive repertoire of experiences that I recurrently draw upon in my teaching and writing.

Before moving to a clinical setting, I assumed there were significant differences between clinical decision making and ethical decision making. To my surprise, I soon discovered a number of similarities between the two domains. At rounds each day, the same generic question was asked about each patient: What should we do today to optimize this person’s health? The assembled group of "rounders," residents and medical students led by the attending physician, sometimes with a consultant as well, would discuss alternative answers to the question, and conclude with a plan for the day as their collaboratively fashioned answer. Next day, if the patient seemed to have improved by following the plan, the group would usually think that their answer was the correct one; if the patient did not improve, they would think otherwise. Of course, either conclusion was fallible because patients can get better or worse regardless of whether their treatment is optimal.

In ethical decision making, we typical ask a similar question: What is the morally best thing to do in this case? If we collaborate in our discussion of the alternatives, and if, where pertinent, we seek others’ expert input, we’re likely to arrive at a better answer than if we don’t collaborate. In ethical decision making, however, we may be less tempted to think that our answer or plan of action (or inaction) is the absolutely best or certainly true answer — because we don’t have empirical criteria such as "the patient gets better or worse" by which to check.

The collaborative model prevalently employed in clinical decision making is supported by philosophers such as Charles Peirce and John Dewey. In their writings Peirce and Dewey also endorse the experience or case-based model of reasoning, or casuistry, that Al Jonsen and Steve Toulmin defend as a means of settling ethical quandaries in health care. Complementing the pragmatic model and enriching my own understanding of both casuistic and principle-based approaches to issues in clinical ethics are recent writings about "standpoint theory." Standpoint theorists argue that optimal collaboration requires attribution of "privileged status" to the input of those whose experience is relevant and whose views might otherwise be ignored or neglected, i.e., those members of the community who are not dominant figures or decision makers. In health care practice and policy making, patients obviously deserve this privileged status.

When Al Jonsen rounded in the neonatal intensive care unit in San Francisco many years ago, clinical ethics was hardly a dominant field, and I doubt that it is dominant yet, except perhaps in a few instances. Nonetheless, some individuals have become dominant, even while lacking the experience that Jonsen acquired or the collaboration he achieved in his interactions with Steve Toulmin and others who served on the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Lest the fruits of collaborative inquiry and clinical experience be compromised, it seems crucial that those who join or continue to labor in the field follow this example.

My Life in Bioethics

Tom Tomlinson

Michigan State University

When I was asked to write about how I got started in bioethics, and reflect on the changes I’ve seen over my career, I agreed with too little hesitation. Later, I had second thoughts. Autobiography can be a risky business. Most anxiety-provoking, I risk revealing more than I intend. Most likely, I risk being boring. My life in bioethics may turn out to be interesting to no one but me. Still, a promise is a promise, particularists be damned.

I didn’t start out to be a "bioethicist." In 1971, when I entered the graduate program in philosophy at MSU, no one aspired to be such a thing. I had just returned from a 3-year stint in the U.S. Army, which had interrupted my completion of the BA. My wife was also completing her BA, and taking a course in the philosophy of mind from Martin Benjamin, then newly-appointed at MSU. She urged me to sit in on class. When I did, I was hooked. Here at last I had found an academic discipline (and a mentor) which allowed, indeed encouraged me, always to ask "But why?" My high school biology teacher had dubbed me "Doubting Thomas." When the claims asserted in our textbook struck me as implausible, I’d refuse to accept them merely on the authority of the authors. I’d demand to see the evidence. I was a doubter and skeptic, sometimes all too eager to deflate the conventional wisdom. Before encountering academic philosophy, I had read and re-read all of Nietzsche’s work. At least at the time, this was required reading for all intellectually disaffected youth. Temperamentally, philosophy and I were hand and glove.

And so when I started my MA, I had no particular objective in mind short of vague hopes that I might eventually be able to make a living in philosophy. It wouldn’t matter if I didn’t, I naively told myself. It would be just fine if I ended up driving a cab. The very idea of "doing philosophy" for six years delighted and excited me. Not just ethics, but virtually everything — formal logic, epistemology, metaphysics, philosophy of science, philosophy of mind, Kant, the British empiricists, Thomas Aquinas — was welcome exercise for my puny but developing philosophical muscles.

Whatever its other virtues, one of the unfortunate side-effects of the institutionalizing of "bioethics" as a career goal can be a premature narrowing of intellectual curiosity and ambition. When students enter a philosophy program with their hearts set on becoming ethicists, they may lack the open spirit that drinks everything in. Required course work outside ethics becomes nothing but a hurdle to be surmounted. Some philosophy graduate students are like the medical student who is so certain he’s going to be a neurosurgeon that he denies himself the possibility of seeing that he might be more skillful, and happier, as a psychiatrist.

As I’ve suggested, my own entry into bioethics was serendipitous. After completion of my MA in 1975, I was gone from MSU for three years while my wife worked on the theater department faculty at SUNY-Plattsburgh (and had Tim Robbins as one of her acting students). As everyone knows, the decade of the 70’s saw the birth and fledgling development of the "practical turn" in philosophical ethics. The Hastings Center was founded in 1969. Philosophy and

Public Affairs began in 1971. 1973’s Roe v. Wade decision triggered what was to become a massive philosophical literature on the ethics of abortion. While I was away, I was becoming acquainted with bits and pieces of this movement, which was also being felt at MSU. When I returned in 1978, MSU had a regularly scheduled and wildly popular course on "Moral Problems in Medicine" (started by Martin Benjamin). And it had a "Medical Humanities Program" in the medical school, under the direction of the school’s founding dean, Andrew Hunt. The Program had no faculty lines, relying instead on the largely volunteer efforts of Martin and Bruce Miller, supported by key medical school faculty like William Weil, who would later chair the American Academy of Pediatrics’ Ethics Committee during the "Baby Doe" controversies.

The Program had a ½-time GA position, which helped support me while I worked on my dissertation. The dissertation was in moral epistemology, concerned with the role of principles in ethical reasoning, not with practical ethics. In 1980, when the dissertation was completed, it would have been unacceptable, despite the growing literature in practical ethics, to write a dissertation devoted to a practical ethical question.

That has changed of course — at least in most departments. This, too, is not an unmixed blessing. Dissertations devoted to an issue in bioethics present some challenges, and raise questions regarding where bioethics should hang its hat. The major challenge is to make such dissertations sufficiently philosophical. For me, work is "philosophical" to the extent that it squarely faces challenges to its own working assumptions. It pushes the demand for reasons as deeply as they can go. Most published work in bioethics, as informing and persuasive as much of it is, is not philosophical in this sense (and here I’m including much of my own work). From a socially pragmatic point of view, this is just fine. Our pragmatic objective is to "solve the problem" of social disagreement over a contentious issue, and if we don’t need to get philosophical to be persuasive, all the better. But if one doesn’t always need to do good philosophy to do good bioethics, why should the study of bioethics be confined to philosophy departments? I have reservations about free-standing bioethics-centered Ph.D. programs, mainly because I worry about their graduates’ job prospects. They reflect, however, the recognition that bioethics as a practical pursuit cannot live comfortably within the confines of a single academic discipline.

None of these remarks imply that bioethical controversies are any less challenging or invigorating. They still are for me, after twenty-odd years. But they highlight a danger for those of us who come to bioethics by way of their love for philosophy, rather than the other way around. Total immersion in bioethics teaching and literature can slowly dull the philosophical senses and tools we once delighted in using. One may awaken one day to realize that a loss has been suffered. One needs to be vigilant, and take corrective action, as I hope I am doing this fall with a seminar that uses persistent vegetative state not as a focal point, but as a springboard for explorations in the philosophy of mind and the nature of personhood.

When I first sat down to write, I didn’t imagine I’d have this much to say. I haven’t even gotten to my faculty appointment. But if I go on, the risk of boredom will escalate dramatically.

A Philosopher in the Land of Bioethics

David C. Thomasma

Loyola University Chicago Medical Center

This is a story of valor and dedication. It is a story of hunches and ingenuity too. It is a story of accomplishment and reward. But it is also a story of powerlessness. The story starts with a fact. All great philosophers were intimately involved in the major issues and debates of their day.

Although I have regularly denied it, I am one of those bioethicists or philosophers of medicine regarded as a pioneer in the field. To apply such an appellation to oneself is the height of folly, since we all develop our ideas in dialogue with past and present thinkers and colleagues. Few are truly pioneers. However, the image of pioneers carving out a legitimacy in a new land is apt. I did start out in the discipline of modern bioethics in the early 70’s and have remained in the field more than 30 years. Longevity more than any other reason gives rise to these reflections. The late K. Danner Clouser, the first philosopher to obtain an appointment in a medical school, used to speak of his "codgertations." There are many fine philosophers of my generation who also turned to bioethics. Most of us could congratulate ourselves on our experiences and the development of the discipline. So I accept with humility the offer to share some perceptions of this vigorous and challenging field. I will organize my remarks around the themes of courage, ingenuity, accomplishments, and powerlessness.

Courage

After agreeing to leave regular academic life and move into the strange new territory of bioethics, I was astonished to discover that other philosophers did not view it as a land of opportunity as well. In fact, a number of them who tested the waters withdrew rather rapidly. For some the challenges lay outside their real interests. Others were skittish about relating closely to physicians. The majority of those who held back were concerned about the regard of other members of their departments of philosophy.

In our time, the action in philosophy was not in ethics. Instead, it lay in philosophy ethics of science, linguistics, logic, epistemology, and critiques of existentialism and phenomenology. Ethics was considered far softer than those fields. Further, bioethics, or medical ethics, was seen as applied philosophy, the lowest possible kind of philosophy in the hierarchy of the department. Individuals were justifiably concerned that their careers in the field and in the department might suffer a serious blow by their involvement in medical ethics.

Those of us who did move into medical and other professional schools were courageous or foolhardy. Good, creative philosophy needed to chew on a new bone. The old debates were inward turning and involved philosophers arguing about philosophy. Ortega involved the analogy of a trip through a pleasant insane asylum! The idea of responding to new challenges excited people with different backgrounds and training. We discerned that the problems posed by modern medicine provoked genuine philosophical analysis. We also saw that our effort might one day evolve into a discipline in its own right. Although a few colleagues thought of medical ethics as an applied philosophy, more of us saw it as a philosophy of medicine, grounded in the practices and conflicts of modern medicine. An early essay by Stephen Toulmin on how medicine saved the life of ethics put it exactly.

Ingenuity

It seems now that there are three branches of bioethics: clinical, medical, and public policy. Individual philosophers contributed greatly to all three of these. A common thread through all three was articulated midway in the last century by Bertrand Russell, who noted that if a scientific civilization were to be a good civilization, it had to aim at good human ends, something which science itself could not provide. The problem is that there is no Archimedean point outside of a scientific civilization from which to draw those good human ends. Even the humanities, that traditionally provided the fodder for such reflection, have been completely subsumed into our scientific culture. This calls for a new kind of philosophizing in which individuals participate directly in the problems. I call this "participatory ethics."

The ingenuity in bioethics comes from being a philosophy on the go. It was created as philosophers made efforts to resolve problems, and then refined when there was time to reflect on the legitimacy of its claims and assumptions. That process continues now with second about the role of autonomy, the American cultural propensity for consensus ethics, assumptions about the value of human life, and so on. These healthy developments signify the maturation of the field. However, they also telegraph the beginnings of philosophy turned in on itself that we originally sought to avoid. In this regard, a recent essay by Albert Jonsen, one of the authentic pioneers in the field, asks why medical ethics has become so boring.

In all three arenas of bioethics, clinical, medical, and public policy, innovations arose. Rather than trying to teach the whole history of ethics, or philosophy, we developed heuristic devices that helped students, physicians, and ethics committee members "work up" an ethical problem. We saw that individual’s own virtues and training came into play. We drew again on ancient sources of ethics, particularly, the Aristotelian view of phronesis, and virtue theory of the Middle Ages, to amplify principle-based ethics, even while turning to very modern ideas of narrative ethics and feminist ethics. The creativity itself stemmed from a genuine appreciation of the full complexity of the moral issues faced by doctors, patients, and society in our time. The struggle is to do exactly what Russell asks, to articulate the direction of our technology even as it is being developed through self-suggestion rather than external norm.

Achievement

Most philosophers who entered the field, have had the satisfaction of directly contributing to the resolution of complex clinical, medical (in terms of research and delivery), and public policy dilemmas. Think of the many Federal and Congressional committees that formulated guidelines for research on human subjects, animals, and on embryos, of the thousands of ethics committees, of the patient rights movement, of the growth and development of clinical ethics consultations, and of the challenges posed by biotechnology.

When I first began there were only a handful of books and really only one journal, The Hastings Center Report. Since then, medical ethics journals and books have proliferated throughout the world. In my case, I am editor-in-chief of Theoretical Medicine & Bioethics (for 15 years), founding co-editor of Cambridge Quarterly of Healthcare Ethics (10 years), founding co-editor of an International book series called International Library of Ethics, Law, and the New Medicine that has produced five volumes in one year of existence, and I have published over 300 articles and 25 books. Many of my colleagues can point to even more impressive accomplishments than these.

How exciting it has been to feel part of an important movement, to contribute to it and to the development of others’ ideas, to grapple with serious mind-bending problems, and to try to articulate the philosophy of medicine and society required for grappling with the explosive issues of the future. That is why I began this brief essay with the fact that every great philosopher has been intimately involved in the major issues of his or her day. It has been a privilege to have played even a small part.

Powerlessness

In the end analysis, though, despite all of the achievements, I have a gnawing sense of powerlessness over the direction our culture and society are taking, embarrassment among international peers at the poor health care planning and provision in our advanced nation compared to almost 30 other countries who are ahead of us, and a conviction that the levers of real power lie far outside of the medical centers and even governmental bodies where we have plied our trade for so many years.

Participatory ethics teaches that more and more of us will have to enter the corporate boardrooms of major international corporations and contribute to the articulation of economic and social developments worldwide. Bioethics in the future certainly does not have to become boring!

Late Expectations: Clinical Ethics and Beyond

Daniel O. Dugan, Ph.D.

Swedish Covenant Hospital (Chicago) &
Emanuel Medical Center (Turlock, CA)

Introduction

I am currently a self-employed Healthcare Ethics Consultant, with two principal contractual organizational clients. Both are hospitals. One is in Chicago, the other in California. While in Chicago, I am Principal Investigator at one of five sites for a National Institutes of Health-funded three-year empirical study of the impact of ethics consultations on patients, families, and staff in Intensive Care Units. During those two weeks each month I also provide educational programs, case consultations (averaging 12 per month), and assistance with a variety of clinical-organizational ethics process improvement projects.

I found my way into the practice of Clinical Healthcare Ethics before it was a field. Like many others in the field during its first three decades, my pathway has been idiosyncratic. In what follows, I’ll provide a narrative of that pathway, and then will conclude by describing how my experience has changed three of my initial expectations.

Narrative

In 1976 I left my tenured Assistant Professor position (Religious Studies) at Santa Clara University, Santa Clara, California, to accept a position as Director of a one-year pilot program, Human Support Services, at a community hospital. My wife and I were parents of three very young children at the time. This decision to leave the House of Intellect for the House of Bodily Fluids prompted one basic question from most of our family and friends: Why, Dan? There were two interrelated factors.

First, seven years before, while in graduate school, my fiance died in an automobile accident. I managed to insulate my grief process, and kept myself on course with my studies, then secured the teaching position I had hoped to find and began my academic career. As the years passed, my repressed grief process began to surface. As I returned, with psychological assistance, to work through my grief, I began to question the professional course on which I had embarked.

Second, I had been teaching an undergraduate course, "Death and Religion," for two years. The students were reading books on the subject: by Jacques Choron, Robert Lifton, Elisabeth Kubler-Ross, and John S. Dunne. Classroom discussions were animated. Animated, but somewhat abstract, I began to feel. So I began working as a volunteer in two local hospitals, pushing book carts and providing emotional support to families in the ICU. I began learning from patients and their families about their experiences of confronting death and dying.

The contrast between my class discussions, filled with others’ philosophical reflections on mortality, and the impact of encountering my own and others’ actual experiences of confronting mortality, led me to feel a growing interest in finding a work setting in which to apply what I had learned in a more immediate, therapeutic way. In Epictetus’ words,

Vain is the word of a philosopher which does not heal any suffering of man. For just as there is no profit in medicine if it does not expel the diseases of the body, so there is no profit in philosophy, either, if it does not expel the suffering of the mind.

So when a friend sent me a newspaper article describing a local hospital’s pilot program in "emotional support," I saw an opportunity to integrate my academic studies with my personal learning. I applied for the position of Director.

My role as Director of Human Support Services was to develop emotional stress management systems for hospitalized patients, their families, and professional staff through direct patient care service and staff education.

The proliferation and development of life-sustaining technologies in the ICU setting, and the decisions about their use, became a major source of emotional stress for patients, families, and staff. I had began to feel the need for further training in assisting with these difficult decisions, beyond providing basic human and emotional support to those involved. My academic background—a B.A. in Philosophy, M.A. in Theology, and Ph.D. in Religion (with half of my coursework in Philosophy), had provided me with a wealth of conceptual tools, but with little help in applying them.

A Cardiac Care nurse, observing my work with patients, families, and staff, and aware of my academic background, invited me to collaborate with her in forming a "Bioethics Discussion Forum" in the hospital. She was enrolled in a Bioethics course as part of her Masters’ Program in Nursing at a nearby university. In her course she had studied the New Jersey case of Karen Ann Quinlan, and had become interested in the Quinlan Superior Court Judge’s recommendation that hospitals in his state establish "ethics committees."

We posted notices throughout the hospital, inviting physicians, nurses, and other staff to the first "brown bag" ethics discussion forum, in December 1979. Fifteen persons attended the first meeting: physicians, nurses, dieticians, and respiratory therapists. I acted as coordinator for this discussion and for those that followed each month. Attendance grew as participants told colleagues of a unique forum in which professionals from many disciplines shared their ethical concerns and gained support and perspectives from one another.

After six months, several members expressed an interest in forming an ethics committee. The discussions were extremely enjoyable, they said. But there should be a way to make them useful to the wider organization. Consensus quickly emerged to become a committee. But what kind: medical staff or hospital? Because members felt strongly that the forum should be confidential, so that participants could speak freely and in trust, the decision was to apply for status as a medical staff committee. One physician objected strongly that such a move would be the death knell of the group, as it would become enmeshed in medical staff beauocracy and politics. He resigned in protest.

The newly formed committee then turned its attention to its mission, composition, and functions. A pulmonologist became Chair. I became Executive Officer. A Bioethics Professor from a local seminary agreed to participate. All agreed that the committee should first provide education in ethics for its members, and begin to provide educational programs to the hospital community at large. We began to circulate and discuss articles from professional medical and nursing journals. We began, at the Chair’s suggestion, to review actual cases retrospectively, seeking to apply ethical concepts. We decided to do retrospective case reviews for six months, and then offer a consultation service in the hospital. Hospital Administration asked the committee to develop an institutional policy to address a recurring problem: refusals of blood transfusions by Jehovah’s Witnesses.

The committee first articulated its mission in early 1980: to provide a confidential forum for patients, families, and staff, to address ethical issues arising in the hospital, through education, policy development, and case review.

In June, 1980 the Committee Chair, the Cardiac Care nurse, and I attended the first conference on ethics committees, held in Los Angeles. We were interested to learn what other committees in other hospitals were doing. We learned at the conference that our committee was more organized and more functional than any other ethics committee at a community hospital in California.

The Ethics Committee quickly became one of the most active committees in the hospital. As XO, I chaired the Education and Consultation committees, organized the annual "Ethics Expert" days and committee all-day retreats, and acted as the point person for most of the case consultations. When University of California, San Francisco, offered an intensive Bioethics Training and Certification course in 1985, I participated.

I began to attend the annual meetings of the Society for Health and Human Values and the Society for Bioethics Consultation. The Ethics Committee began collaborating with the Quality Assurance Committee, to address recurring ethical concerns arising in our consultation work. I began making "proactive ethics rounds" on all units in the hospital, in order to prevent and respond in a timely fashion to ethical problems in patient care.

In 1988, following a recommendation by the Medical Staff Executive Committee and the Medical Ethics Committee, I began to prepare to assume my role as full-time Hospital Ethicist. Five years later, I accepted a position as Director of Healthcare Ethics Consulting Services at the Park Ridge Center for the Study of Health, Faith and Ethics in Chicago.

Expectations and Experience

1. Medical Staff and Administrative Support.

Because I entered the role of hospital ethicist in a hospital setting in which I had established credibility with the medical staff and hospital administration, and as a result of their recommendation, I expected their continuing support. Medical staff support in fact did continue. Administrative support, though, became increasingly conditional, as managed care pressured administrators to justify expenditures in relationship to demonstrated revenue or cost savings.

I have learned that credibility with the medical staff must be earned anew in every new setting. Formally or informally, physicians view ethics consultants as "on probation" for about five years. Ethicists interact with physicians, their patients and families, in times of great delicacy and sensitivity, with legal and economic as well as emotional consequences at stake. Only consistently competent, challenging, and clinically astute interactions over time earn that credibility.

I have learned that administrative support, except in religiously based hospitals whose missions explicitly include organizational-clinical ethics, or in university-based centers in which faculty staff the service (often with grant assistance), is increasingly difficult to obtain and maintain. Outcome studies showing the effectiveness and cost-savings of ethics consultation and education are only now being undertaken. Administrative support in managed care environments from now on will, I believe, require such data as a condition of support.

2. Models of Case Consultation

I expected in the beginning that case consultation would continue to be a committee function, and that the small-team model would prove most effective. I now believe that managed care, with its financial stresses on healthcare professionals and its financial pressures on hospital administrators, has made case consultation most appropriately the role and function of individual consultants. For whole committees or consultation teams consisting of committee members to provide the service, physicians in private practice and healthcare professionals with full-time jobs in the hospital or organization must be able to find "extra" or "volunteer" time. That is becoming increasingly difficult, even impossible. The model that now seems most workable to me for case consultation is that of an individual consultant, reporting regularly and in detail to the ethics committee.

3. Organizational Ethics

In the beginning I expected that I would be able to concentrate solely on clinical ethics. There was more than enough work to do at the bedside. Let clinical ethics not be sullied by "professional ethics" complaints, administration interests in reduced length of stay, or rising federal and consumer concerns about business practices in health care organizations.

In the beginning I resisted what I regarded as the "sullying" of clinical ethics through collaboration with "Quality Control," whose agenda at the time I discerned to be institutional financial well being.

I have learned, with the rest of the world, that clinical ethics naturally leads to organizational ethics, most often through Quality Management. Every case is simultaneously an individual problem and an organizational opportunity for systemic professional practice and patient care improvement. Integrating clinical ethics with organizational mission, and with other ethics-related initiatives in the organization (e.g., Business Integrity, Managers’ Values-Centered Training, Institutional Review Board) is very important work in progress. Ethicists’ and ethics committees’ contributions to defining and strengthening organizational ethical culture, in the long run, is the best chance patients have for better care at the bedside.

Conclusion: Back to the Future

In the light of my journey into healthcare ethics during the past three decades, I ‘d probably make different strategic career choices if I were looking forward to working as a bioethicist instead of reflecting on the path I’ve taken. I would still study the history of philosophy and ethics, and would probably still major in Philosophy in undergraduate studies. I would spend some time as a volunteer at local hospitals and nursing homes, helping out and getting to know the concerns of patients, families, and staff. I’d also take elective courses in medical terminology, statistics, management, counseling, and organizational development. I’d set my sights on a graduate program in Bioethics, and lurk on as many bioethics listservs as I could find.

Given my discoveries that unanticipated life events have a way of overturning career plans, however, if I set my sights on a career as an ethicist, I’d probably wind up as a travel agent.

Experience and Reflections

Mark Sheldon

Indiana University Northwest
Indiana University School of Medicine

As an undergraduate, I was attracted to courses in both literature and philosophy. The big questions attracted me to philosophy: Does God exist? With what purpose should we live? What should we value? Why do we suffer? Yet, I always found it difficult to make sense of these questions without attending to the concrete lives that human beings actually live.

The day I graduated from college, I was drafted into the U.S. Army and discharged two years later as a conscientious objector. Next, I decided to apply for graduate school in philosophy, rather than literature. I did not have any idea what I was going to do with a philosophy degree. I just very much enjoyed being in an atmosphere where one could think freely about fundamental issues. I could not believe my good fortune at having such an opportunity. Of course, given all that was happening during this period, from 1967 (when I graduated from college and was drafted) to 1975 (when I graduated with my PhD), my sense of good fortune was mixed with a feeling of obligation and a desire to be of some use or service. I even contemplated going to rabbinical school but realized that I did not have the faith to sustain such a choice.

My first teaching position was on a campus that included part of the medical school. At the reception for new faculty, the medical school dean approached me. He had heard that the philosophy department had hired a new person with an interest in ethics. This was 1975, and he had concerns about the values that medical students were learning. He felt they were losing sight of the fact that patients are human beings, not diseases. He offered me an appointment in the medical school as an adjunct assistant professor of medicine.

While this offer was somewhat confusing from a professional point of view (how would this work in relation to tenure, etc.), it was intriguing from a personal perspective. First, members of my family were service focused — physicians, lawyers, social workers. While they tried to be supportive, they clearly questioned the value of my work as an academic. The appointment in medicine gave me some credibility on this front. Second, I was, after all, a child of the 60s. The idea that I would be an instrument in restoring some fundamental humanity to the hierarchical institution of medicine appealed to me from a political point of view. Third, the philosophical issues that I would consider – for instance, personhood, the meaning of death, and justice, were rich.

I was anxious about teaching in the medical school. I did not have "MD" after my name. What credibility would I have? Why would the students pay attention? I realized immediately that a purely abstract approach would fail. Discussions had to be based on cases. After pointing this out to the dean, he arranged for me to spend time with the residents at the hospital. They, too, he said, needed some work in ethics.

Then, I really wondered what I was doing. It seemed to me that the credibility issue, in going from medical students to residents, had been compounded. During my first several weeks at the hospital, where everyone wore one kind of uniform or another, I felt like Donald Duck, a guy without pants. I felt very vulnerable, exposed, uncertain of my authority. I was very unclear about my role or purpose.

Fortunately, there were residents and attending physicians who had been philosophy or humanities majors as undergraduates, who understood the value of philosophical reflection, who actually thirsted for whatever light philosophical thought could bring to their activities. We engaged in long discussions, talked at length about cases that they encountered. Several suggested that I round with them. I did not understand what this meant, but I soon learned that it involved contact with patients. In a very short period, I had gone from contact with medical students, to contact with residents and attending physicians, to contact with patients. I remember how odd I felt the first time I was in the presence of a partially undressed patient.

Still, I regarded myself as essentially an academic. I was engaged in teaching, not doing. Then, one day, during rounds in the oncology unit, the attending physician, in the presence of several medical students and residents, told an elderly man that his diagnosis involved a tumor on the lung. He used language that was abstract and non-specific. Out in the hallway, only as a teaching point, I raised the question of whether the man really understood what had been said. The attending, truly an excellent physician, who had no ego whatsoever, said, "Let’s go back and see." I found myself saying, "No, no. I was just raising a question for discussion." He said, "And it’s a good question." We all went back into the room. The attending sat down on the patient’s bed and slowly, carefully, explained the meaning of the tests that the gentleman had undergone. It was clear from the way the patient’s body suddenly slumped that he had not heard the diagnosis the first time. I felt terrible, and responsible.

It took me a long while to get used to the fact that my questions had concrete repercussions. Certainly, as a teacher in introductory philosophy courses, I have had undergraduates who were disturbed by questions about God’s existence. But the experience of the philosopher/ethicist is different. Physicians, patients, nurses, and families make decisions that involve immediate consequences. Yes, patients have always suffered terribly, and human beings regularly become aware of their impending deaths. But bioethicists increasingly contribute to these events. We do not control the conversations, but often we make them possible. This is a significant contribution in a world dominated by technology and rank.

In the twenty-seven years that I have been doing this work, I have certainly learned what I am not. I am not a physician, psychiatrist, nurse, social worker or chaplain. Instead, I am a student of philosophy, mindful of the importance of clearly identifying the question, of recognizing which argument or evidence provides support for which claim, and of being fully aware of the limitations of my learning. I resist any effort to establish a new hierarchy with the ethicist as expert. I find myself, instead, in dialogue with people from other disciplines, asking the questions that are so obvious that only a philosopher would think to ask them, or that only a philosopher can sometimes get away with asking.

Book Reviews

Is There a Duty to Die? and Other Essays in Bioethics, by John Hardwig with Nat Hentoff, Dan Callahan, Larry Churchill, Felicia Cohen, and Joanne Lynn,

Is There a Duty to Die?, edited by James M. Humber and Robert F. Almeder,

Reviewed by Felicia Ackerman

Brown University

"Have mercy upon me, and suffer me not to die for thy love."

Sir Thomas Malory — Le Morte D’Arthur

If you are old or terminally ill and if you keep up with trends in bioethics, you are probably feeling increasingly unwelcome in the world nowadays. Many bioethicists think you should not get life-prolonging medical treatment, particularly if it is expensive and high-tech. John Hardwig goes further. He thinks you can have a duty to kill yourself. He says, "There can be a duty to die before one’s illness would cause death, even if treated only with palliative measures. In fact, there may be a fairly common responsibility to end one’s life in the absence of any terminal illness at all" (Hardwig, 121). When does he think "many of us will one day have [the] duty [to die]" (Hardwig, 82)? When we are a burden to our families.

The claim that there is a duty to die in order to avoid burdening one’s family is the central thesis of the title essay in Hardwig’s book, Is There a Duty to Die? and Other Essays in Bioethics (which I will call ‘H’ when identifying quoted passages). Hardwig’s other essays develop his view that bioethics should be "family-centered" rather than "patient-centered," applying this view to a range of related issues, including assisted suicide, proxy decisions, patient advocacy, and elder abuse. The book ends with commentaries (on the title essay) by Hardwig’s five co-authors, Hardwig’s reply, "Family Responses" from his wife and children, and a list of "Responsibilities of Those Facing the End of Life." Additional commentary appears in the Humber and Almeder volume (which I will call ‘H&A’), most of whose essays deal (in varying degrees) with Hardwig’s title essay. Several expand the argument by taking the issue beyond the family and discussing whether one could have a duty to die in order to avoid using a disproportionate share of national or global resources. This review essay will focus on Hardwig’s "family-centered" views and their critics and will concern itself almost entirely with his "duty to die" thesis.

What is Hardwig’s "Duty to Die" Thesis?

Hardwig vacillates between strong and weak versions of this thesis. A strong version is suggested by his praise of the list of "Responsibilities of Those Facing the End of Life" that was formulated by a group of retirees (most of whom were in their seventies) in a discussion he led at a "seniors’ organization" (H, 196). The list’s eighteen strictures include (2) "Die in a way that will leave your family in the best position" and (5) "Don’t live so long that your loved ones will wish you were dead" (H, 198). A literal reading of these two strictures places so little value on the lives of the elderly that it is hard to take seriously. Stricture (2), taken literally, implies that any improvement, however small, in the family’s position, calls for any sacrifice, however great, from "those facing the end of life." But as Rosemarie Tong asks, "Do care-receivers really owe a duty to die to caregivers who weight their own interests far more heavily than the interests of those for whom they supposedly care?" (H&A, 140). Elsewhere I have introduced what I call "the paradox of the selfless invalid" : if your family members would welcome the sacrifice of your life for their sake, how can they be worth it? And if they wouldn’t, why sacrifice it? This problem, which I will return to later, becomes especially pressing when we consider luxuries for the family vs. life for the patient. What if your forgoing a heart transplant will put your family in the "best position" of being able to buy a long-desired yacht?

Stricture (5), as I have argued elsewhere, treats life as a dinner party where the loved ones are hosts and the elderly are guests who should not be so rude as to overstay their welcome. The lack of qualification entails that the elderly should honor every reason their loved ones may have for wishing them dead. What if your loved ones wish you were dead so they could inherit your money and buy a Jaguar? And is it only the elderly who should die before their loved ones wish them dead? What about a healthy but tiresome 30-year-old whose family is starting to get fed up with his incorrigible foolishness and clumsiness? Marilyn Bennett points out that "A 70-year-old person may be just getting free of a lifetime of burdens and sacrifices for others when he learns that his remaining time will be limited and costly" (H&A, 51). I would add that the "others" are apt to be members of his family, and I think it is now high time for them to start making reciprocal sacrifices for him. The relevance of family reciprocation is also acknowledged by Felicia Cohn and Joanne Lynn (H, 153, note 6), Hardwig’s son Bill (H, 191), and Paul T. Menzel (H&A, 112 note 6). Hardwig himself touches on this issue, as I will discuss later.

A possible reply by Hardwig here is that the list should not be taken literally, and that, in any case, it was formulated not by him, but (as I have mentioned) by a group of retirees in a discussion he led. But although Hardwig admits the list is "not uncontroversial" (H, 197) and says he offers it "as an excellent starting point for moral discussion of our responsibilities at the end of life" (H, 197), he also praises it as "a remarkable list" (H, 197) and offers no criticism of any of its strictures. And if the list should not be taken literally, how should it be taken? When a philosopher leads a discussion aimed at formulating principles of practical ethics, isn’t part of his role to help make the principles clear enough to be a useful guide to action? Moreover, some of Hardwig’s remarks elsewhere in the book support a strong version of the "duty to die" thesis. For example, one way he seeks to motivate his claim that people can have a duty to die is by saying, "[W]hen I ask