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06/04/2018

Outsider/Insider

This post also appears as an editorial in the June 2018 issue of The American Journal of Bioethics.

by Albert R. Jonsen

The editors of The American Journal of Bioethics chose well when they invited me to write a preface for this issue devoted to the Insider/Outsider problem in bioethics: I am the original and perpetual insider/outsider in the field. My entry into medical education, in 1972, was marked by an argument over my title: should I be designated Professor of Medical Ethics, as the Dean of University of California School of Medicine wished? A very senior faculty member objected, saying that the title was inappropriate since I did not do anything medical. The newly minted word “bioethicist” was bestowed upon me to make it clear that I was an outsider. In the subsequent forty years of my career as a bioethicist, I shifted from outside to inside on multiple commissions, committees, panels, and publications. Each role had its title, from the most prestigious insider Professor to the Adjunct, barely hanging on (my favorite title was the very Oxonian “Visiting Member of the Senior Common Room,” which, despite its ephemeral tone, allowed me inside imposing Christ Church for a year at High Table, than which nothing is more inside). Arthur Caplan once introduced me as the Forrest Gump of bioethics: wherever bioethics was discussed, there was Jonsen (ironically, Caplan inherited the role!).

Insider/Outsider and Critical Distance is the topic of this issue of AJOB and the 2017 ASBH meeting. White, Shelton and Rivais provide a comprehensive description of the topic during the early years of bioethics, or more precisely, bioethics consultation. Their article is primarily a description rather than an analysis (good description should precede analysis). In other scholarly fields, the topic has been extensively analyzed. Anthropology recognized the topic from its origin: how does the academic Westerner relate to the “natives”? The more recent field of Religious Studies (my own field) also asked from its earliest day whether religion or religious experience could be fairly studied by a non-believer. There is an abundant literature on the topic in both fields. There is even, I am told, a literature in Labor Economics. One constant thesis flows out of these studies: it is very difficult to define Insider and Outsider, regardless of the field.

A focus on clinical consultation narrows the grounds for a theoretical analysis. Consultation in medical care has a long history; the Hippocratic literature contains a short but cogent comment starting, “a physician does not violate etiquette if, being in difficulty on occasion over a patient and in the dark through inexperience, he should urge the calling in of others, in order to learn by consultation the truth about the case…”. The consultant is an outsider to the case who becomes an insider by invitation of the attending physician and the patient. The passage goes on to note that envy or jealousy or greed (fear that the consultant will steal his patient) or because they are infuriated by the suggestion that they need help ought not deter a physician from seeking outside consultation. The primary purpose of consultation is the benefit of the patient in peril. Consultation about patient care raises the question of “critical distance” in a striking different way than in the sciences mentioned above: lack of advice or bad advice can allow the patient “to drift on a sea of wretchedness…give up the struggle and depart this life.” Consultation in medicine is a life and death matter (consultation in military strategy is similar).

But consultation among physicians is, presumably about medical matters: a cardiologist is asked to advise on treatment of a complex heart problem. It is her experience with many patients and knowledge of heart physiology and pathology that gives her credit. What credit does an ethicist bring to the case? Another Hippocratic treatise, The Art, suggests an answer. The meaning of medicine, it memorably states, “is to do away with the sufferings of the sick, lessen the violence of their diseases and refuse to treat those who are overmastered by their diseases, realizing that in such cases medicine is powerless.” Each of these essentials of medicine, but especially the second and third, is profoundly ethical: what risks are balanced by what benefits in order to lessen the violence of disease (think of chemotherapy for cancer) and, above all, when is it right to refrain from trying to cure? (think of end stage myasthenia gravis). In such cases, the medical and scientific understanding is inevitably supplemented by the profound ethical questions of patient consent, family wishes, value of life and even costs of care and frustration of caregivers. Does not familiarity with the complexities of such questions give the credit that may justify inviting an ethicist to be an insider? The concluding words of the Hippocratic text that advises consultation are “no matter how much help you have, you can never have enough.”

An outsider invited into a case as a consultant must quickly learn the circumstances of the case; in addition, she must integrate the topics of her own expertise. I appreciate the remarks of White and colleagues about the “Four Box” method which I and my colleagues, Mark Siegler and Bill Winslade devised to allow any outsider—bioethicist, clinician, family member—to grasp systematically the comprehensive features of the case.

We have concentrated on consultation in clinical ethics but, of course, bioethics is a much wider field, as my book The Birth of Bioethics (1997) makes clear. The insider/outsider problem and critical distance must be treated differently—more like anthropology and religious studies. Still, there is an outreach from the more descriptive and theoretical bioethics toward clinical consultation. The competent consultant brings an intellectual setting from bioethics and must learn how to fit bioethics into the specific, concrete circumstances of cases. This is the casuistry of which White et al. speak. Thus, the field in which I have proudly been a pioneer opens insider/outsider dimensions yet to be explored and incorporated. I am reminded of the words of the “pioneer” medical ethicist of the 19th century, Dr. Thomas Percival (who invented the term “medical ethics”) who wrote, “Let the physician and surgeon never forget that their professions are public trusts.” “Public trust” implies that, at some time and in some circumstances, every person may be insider or outsider and be called to view a case from a critical distance.

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