by Craig Klugman, Ph.D.
I attended my very first academic conference in 1997, which happened to be the Combined Meeting of the Society for Health and Human Values, American Association of Bioethics, and Society of Bioethics Consultants. I was also in Houston the next year at the very first meeting of the American Society of Bioethics & Humanities. Bioethics and Medical Humanities had married and that was their reception.
This has not been an easy marriage. Some medical humanities scholars have expressed feelings of being slighted, minimized in programs, and not always having a seat at the table. A few in bioethics have expressed concerns that the humanities scholars do not want to play with others and have their own agenda. In this marriage, the couple sleeps in separate bedrooms.
As someone with a doctorate in medical humanities and who was trained in medical anthropology (narrative phenomenology) and bioethics, I never understood why the parents seemed to bicker. From my perspective both clearly had contributions to make to the other. I have published in both bioethics and medical humanities journals as well as have presented at meetings of both. I use films, stories, and writing in my bioethics courses; and discuss issues of ethics and professionalism in my medical humanities class.
In the last few years, some in medical humanities have been in an open marriage, having their own meetings (Health Humanities conference) and linking with other like-minded organizations (MLA). Still, I did not understand why our parents fought. Was it merely a question who got top billing? Consider that a “medical humanities” program was recently ordered to change its name to “bioethics & medical humanities.”
I am wrapping up a scholarly project that discusses bioethical issues through the lens of the medical humanities. For example, neuroethics is discussed through Total Recall, Eternal Sunshine of the Spotless Mind, Star Trek, and Neuromancer. Since this was the way I think and teach, I assumed this would be an easy and fun task for most. I was wrong.
As I soon discovered, other writers had difficulty seeing ethics through this lens. Or they could list a number of films that dealt with bioethical issues, but could not integrate the two together. Are these ways of thinking so different?
In “Analyzing Pandora’s Box,” (appearing in The Ethics of Bioethics: Mapping the Moral Landscape), Carol Levine talks about the tension between bioethics and the medical humanities. She suggests that the definition of medical humanities comes from one’s own perspective: “For those trained in literary theory and criticism, fiction and poetry about doctors and patients comprise the core of medical humanities. Those trained in philosophy, history and anthropology, on the other hand, see their disciplines as medical humanities as well. These fields are perhaps more easily included under the “bioethics” rubric, which tends to see literature as enrichment rather than enlightenment.”
Levine also points out Howard Brody’s comments on James Terry and Peter Williams’ perspective that the difference is one of ambiguity (Brody 1991). In her words, “Ethics seeks to strip away layers of ambiguity to find a core than can be understood in terms of agreed-upon concepts and principles. Literature, on the other hand, revels in ambiguity.”
Another distinction is that bioethics portends to be normative while the medical humanities is more descriptive. One is about how people ought to behave and live and the other looks more at how people experience (or conceive of experiencing) the world (or a life, or a disease, or a series of events). The humanities can also be pursued for pleasure, self reflection, or insight. Bioethics is more straight-forward and while may be interesting, is rarely pursued on a tropical beach.
For several books on medical humanities, bioethics is appears for instrumental value and in bioethics books (including my own project) the humanities are instrumental to bioethics. Tod Chambers examined bioethics cases as a literary genre in The Fiction of Bioethics. In Medical Humanities: An Introduction, Tom Cole, Nathan Carline, and Ron Carson suggest that the medical humanities are a response to dehumanization in medicine that allowed practitioners and patients to reclaim their identity and authority. They cite Anne Jones who warned against believing that merely exposing students to the humanities would turn them into humane physicians. Terry and Williams suggest that this instrumental approaches can both obscure the ethical issues and distort the value of literary and art study.
In the recently released Health Humanities Reader, Tess Jones, Delese Wear, and Les Freidman suggest that the humanities offer an opportunity to practice literary skills that are used in medicine (interpreting, reading/listening, writing) as well as moral reflection. They suggest that the humanities bring together art and science.
In two places these boundaries are crossed and both ways of knowing are viewed as being of inherent value. In narrative medicine, patients’ experiences provide understanding and insight to the clinician but also are valuable for the patient since the physician becomes invited as a co-author in the disease narrative. And in narrative ethics, stories give insight and moral weight in facing ethical dilemmas.
Sometimes the tension comes from placement and role in the health sciences university. Bioethics finds itself more fundable from a grant perspective and some of its activities, assuming clinician-ethicists, may even be reimbursable (especially now that Medicare allows payment for end-of-life conversations). Ethics is referred to in accreditation documents as well (ACGME, AAMC, Joint Commission) The humanities, on the other hand, have fewer funding opportunities and are not a requirement in the accreditation process. In a four-year university, the medical humanities have traditionally held the upper hand because they align more with existing departments. Bioethics is usually a separate program or a specialty within philosophy. But where new interdisciplinary health programs appear, bioethics is usually privileged—seen by students as more relevant to their future career goals. For example, my department offers a bioethics course four to five times per year and it has always been full to capacity. The Medical humanities course is advertised to students, offered once every other year, and still it is a struggle to get the minimum number of students to enroll.
What both bioethics and medical humanities have in common is that they are interested in the same kinds of questions—the role of health and medicine; identity; the construction of experience; illness and disease—which is why I have always viewed them as part and parcel of the same genre of academic inquiry.
What is the future of these forms of investigation? Is having a topical interest in common enough? Given the tensions between the two, it may be time to ask, as often happens in a marriage, whether there should be some counseling or a separation.