The Patient Experience Book Club at NYU Langone Medical Center

March 2, 2016 at 1:41 pm

When an AP reporter called to tell Erika Goldman, publisher of the Bellevue Literary Press, that its novel, Tinkers, by Paul Harding, won the 2010 Pulitzer Prize for fiction, "it was akin to receiving a blow to the head," she said. "It was concussive." For the first time since 1981, a book published by a small press won the award.

Ms. Goldman told this story to the members of the Patient Experience Book Club at NYU Langone Medical Center, a group that includes physicians, nurses, administrators, analysts and social workers among others. On a recent Friday afternoon, the group met to discuss Tinkers.

Tinkers recounts the last days of George Crosby. Lying in a hospital bed in the middle of his living room, surrounded by the members of his extended family, George's thoughts drift between the scene around him and memories of his boyhood. His father, Howard, a peddler of home goods in rural Maine, had epilepsy. Faced with the possibility that he would be committed to a psychiatric hospital Howard Crosby abandons the family leaving George, his mother and siblings to fend for themselves.

Time is a thematic thread running through the novel (George repairs clocks) as the narrative flows between memories of his childhood and his adult life. Harding describes his book as unlineated poetry. Its rich, descriptive language requires readers to settle into the prose, avoid distractions, and allow themselves the space to fully experience the story.

After a brief introduction by Ms. Goldman about how the Pulitzer Prize process works, the group turned to a discussion of the text. Their interpretations were filtered through their individual experiences working with patients and families. A social worker compared some "not so great" deaths she has witnessed to George's death at home with his family. A neurology administrator pointed out that the stigma attached to epilepsy remains a problem for some of the patients she encounters. Tinkers draws attention to the silence surrounding illness, another commented.


The Patient Experience Book Club was started by Dr. Katherine Hochman in 2012. She came up with the idea after attending a conference on patient experience that was organized by the Institute for Healthcare Improvement in Boston: "What I took away from that was in order to have an engaged patient, we need to have an engaged staff." She decided to hold meetings every two months to discuss books that related, even tangentially, to patient care. A small grant funds box lunches and copies of the selections. The books are made available in advance of the meeting. Sessions typically draw from 10-30 people from all areas of the medical center. For many, it's a chance to meet co-workers who they do not interact with in their normal daily routines.

Locksley Dyce, a hospital administrator, loves to read and is a regular attendee: "It affords me the opportunity to meet in a multi-disciplinary group and exchange thoughts with healthcare professionals whom I probably would not meet otherwise."

The Club invites a faculty or staff member with expertise in a particular area to lead the sessions. Dr. Joseph Lowy from the palliative care service led the discussion of Being Mortal by Atul Gawande. David Oshinsky discussed his book Polio. And during the Ebola scare, the novel Blindness prompted a discussion of what it would be like for a whole society to be affected by an illness. During that session, Hochman and the group wore blindfolds to experience blindness for themselves.


Mr. Dyce finds the sessions particularly thought-provoking. "We try to apply the material from the book to healthcare - especially patient care - and the individual roles that we play in it," he said.

As the session on Tinkers drew to a close, and the members prepared to go back to work, ordering tests, analyzing metrics and attending to their patients, they reflect on the issues brought up in the meeting and acknowledge the importance of taking time to connect with their patients.

The group meets next in April to discuss When Breath Becomes Air by Paul Kalanithi.

English Departments and Healthcare

May 5, 2010 at 12:05 pm

Commentary by Bernice L. Hausman, Ph.D., Professor, Department of English; coordinator of the undergraduate minor in Medicine and Society, Virginia Tech.

In answer to a listserv question about how professors of English might benefit from interaction with health care professionals:

I think one real benefit is widening the range of impact for English studies. Even our English majors can sometimes not see the importance of their knowledge and their competencies in the larger world, and often we can only suggest to the best of them that they go to graduate school to become like us. But undergraduates in English who are educated in the medical humanities begin to see places for themselves in the policy world, in public health, and in other careers in health care. That is one specific tangible benefit.

Another benefit is widening our own sense of efficacy as faculty. We have much to offer in terms of interpreting medical discourses in the contemporary world. Susan Sontag first noted in 1977 that all experiences of cancer are metaphorized into "fights" or "battles." That terminology rages on, and impacts cultural and medical thinking and practice about cancer. Our engagement with these issues and dissemination of our ideas in the public sphere is important, and it is an often neglected element of our scholarly practice. Engagement with physicians is one place to start.

Finally, we can benefit from collaborative funding endeavors. I am currently leading a research group studying discourses of vaccine refusal. As head of a multimodal team that includes faculty (humanities and public health), graduate students, and undergraduates, I find the research synergies energizing. In addition, we are going to submit a funding proposal to the NIH or CDC concerning the social and cultural contexts of vaccine refusal. Working with physicians and other health care professionals would only strengthen our proposal. Such research projects are intellectually and socially valuable, and can potentially bring in much needed funds to humanities departments increasingly strapped for operating funds and graduate student stipends.

The "Parallel 'Parallel Chart'"

March 8, 2010 at 5:58 pm

an illustration of hands reaching outCommentary by Hedy S. Wald, Ph.D., Clinical Assistant Professor of Family Medicine, Warren Alpert Medical School of Brown University, Providence, RI

May, 2006. We treated our Doctoring small group to a nice home-cooked meal to celebrate the conclusion of their first year of medical school-eight students, two lucky teachers. Students, after all, are hungry for knowledge but they're also hungry. We had grown to know these now 25% doctors through didactic but more so through their reflective narratives that we were privileged to receive and respond to…After dessert, I surprised each of them with a personalized binder of all their narratives plus the written feedback they had received over the course of the year from their co-teachers-Hedy (me), a clinical psychologist and Steve, a family physician. The teachers lugged home extra large binders with all the students' writings and feedback, precious cargo indeed. I hoped the students would hold onto the experience, maybe even look back one day upon those texts, tangible evidence of their metamorphosis. I got choked up that evening. With good reason.

It is a mysterious process, this reading and responding with written individualized feedback to students’ reflective narratives as we accompany them on their journey of personal and professional identity development. Rita Charon captured the awe: "What a remarkable obligation toward another human being is enclosed in the act of reading or listening" (1, p.53) This became my mantra as I diligently typed at my computer, striving to craft meaningful, quality feedback to the students’ narratives that had sailed across cyberspace to land on my screen. I tried hard to establish a "comfort zone", a trusting "mentor" relationship where an embryo doc could safely share vulnerabilities and uncertainties, personal angst and yes, triumphs, dramatic moments and perhaps even more meaningfully, everyday moments of caring that should be recognized by a self-aware, mindful practitioner (student and teacher alike). And, I learned, it wasn't a bad idea to keep "oven mitts" (2) nearby for the "hot" stuff, the personal and/or professional content that can be challenging for both writer and reader, albeit less frequently encountered. Life is not sanitized, homogenized, or neatly packaged. Neither are narratives.

Interactive Reflective Writing

Some background. Several years ago, Warren Alpert Medical School of Brown University (Alpert Med) included an interactive reflective writing innovation within their Doctoring course (3) for first and second year students; the current curriculum includes this as well. I was there from the get-go. Students send confidential "field notes" by email throughout the year- in response to structured narrative prompts on patient encounters and other topics-and receive written feedback from an interdisciplinary team. Early on, I sensed something special unfolding…Narrative medicine enthusiasts will not be surprised to hear about the perceived benefits of hearing a student’s voice within narrative (valued as distinct from the usual group dynamic), witnessing the representation of their experience in the written word to give it meaning, and deepening learners' reflective capacity through this process. "Clinicians donate themselves as meaning-making vessels to the patient who tells of his or her situation", Charon observed (1, p.132)…And the embodiment of this? The meaning-making vessel of narrative. Written feedback, I would suggest, is potentially a "meaning-making vessel" in its own right. Indeed, the "interactive" nature of this paradigm has pedagogic value, students have noted, as they appreciate writing with an "audience" in mind. (4) Narratively humbling indeed for those in that audience. (5)

Narrative content in a longitudinal context, Steve and I noticed, documented our students’ learning journey. But what of the teachers, the "seasoned travelers"? (6) It’s not about us, it’s about them (our learners). I know this. But maybe, just maybe, it’s about us too. Narrative connects on so many levels. We know this. It reminds us, inspires us, nourishes us. Students’ revelations within confidential interactive reflective writing can have a powerful impact, touching one’s heart and soul. Through authentic engagement, I found that their writings about clinical encounters (including personal and professional issues) served as narrative triggers for my associations. I experienced a flow, sometimes tidal wave of cognitive and affective responses, personal and clinical recollections, a potential treasure trove to share. Yet I would not share it all; educational responsibility prevails, judgments need to be made, and students don't want to read novels on their narratives anyway. Ultimately, something about this experience resonated with a key concept I had learned in narrative medicine: the "parallel chart" teaching tool, (1) inviting further contemplation.

Rita Charon appreciated the value of considering the nuance and texture of patients' experiences of illness as well as what students themselves were undergoing in providing patient care, even though "you cannot write that in the hospital chart, we will not let you". (1, p.156) "And yet", she instructed clerkship students (and later, residents as well), "it has to be written somewhere. You write it in the parallel chart" (1, p.156) In similar fashion, I suggest, the teacher's experience of the student's narrative, of the student's "narrative writing in the service of the care of a particular patient" (1, p.157) can be considered a "parallel 'parallel chart'". In essence, my narrative writing evoked by the student's text is in "the service of the care of a particular student", regardless of whether all of it or none of it appears in my formal written feedback.

The Teacher's Experience

What of this living organism, this "parallel 'parallel chart'"? Might it offer opportunities for a parallel process of transformative growth of a teacher? Let the student's narrative "brew". (7) Allow the narrative to speak to us, guide us, enhance our awareness, then trust our instincts, use our curiosity, and sift through our "parallel 'parallel chart'" to craft feedback of substance and worth…all in the service of the student, yet with mutual benefit. Let the teacher's narrative "brew" too. Professor Lee Jacobus' observation that "time moves on once the book is gone from the writer's hand and the writer is no longer the person who wrote the book" is germane (blog review of Margaret Atwood's Negotiating With the Dead: A Writer on Writing). (8) The student is no longer the person who wrote the reflective narrative; neither, I would assert, is the teacher who responded to it. It's called Education. And it gives "faculty development" a whole new meaning. The intersubjective process of transformative growth (1), I now realize, is not the student’s sole proprietorship. (9)

So we sift, filter, craft, and mold our "parallel 'parallel chart'" for most effective educational impact. My research colleagues at Alpert Med (Drs. Reis, Monroe, and Borkan) and I recently offered the BEGAN tool, the Brown Educational Guide to the Analysis of Narrative to help guide faculty with this process, describing integration of personal and clinical experiences, reflection-inviting questions, elements of close reading, as well as student text quotes within written feedback to students' narratives. (10) Be a "generous listener" (11) but more than that, use that "parallel 'parallel chart'" to support and challenge the learner toward deeper reflection, understanding, and meaning making. Oh, and be sure to pause before hitting the SEND button, we advise, to avoid foot in mouth disease and other such maladies.

Concluding Reflections

The literature is replete with explorations of what doctors find meaningful about their work, what it is that sustains them-making a difference in someone's (the patient's) life is often mentioned. (12) Within medical education, connecting to students through their narratives about connecting with patients can help make a difference in students' lives and our own. "Learn from every patient", the teacher teaches the student. "Learn from every student", the narrative teaches the teacher. And we do. Impressed with the power of narrative, a primary care doc, for example, recently remarked to me that reading and responding to students' narratives was helping remind him why he went into this business. As for me, I've grown as a teacher, colleague, and writer. Teacher me now routinely uses my "parallel 'parallel chart'" (with deepened insights) and BEGAN tool to craft what I hope is useful, meaningful individualized feedback to reflective narratives in the Alpert Med family medicine clerkship. My colleague self "ping-pongs" ideas (based on my response flow) with co-facilitators within small group teaching and with research colleagues, sparking creative output. I'm also fortunate to be able to reflect on their written feedback to students derived from their own "parallel 'parallel charts'". As a writer, narrative flow has led to gratifying creative and academic writing accomplishments; JAMA, Newsweek, Academic Medicine, and more. Correlation does not imply causation, but it sure feels that way. It's been a remarkable journey.

I ran into one of my original first-year Doctoring course students recently at an Alpert Med seminar. He looked good, more polished and self-assured, excited about Match Day in March, he told me. We took a moment to reminisce about the "good ol' days" of Doctoring and my, how time had flown. "I still have the binder", he grinned as he walked away and made my day. "So do I", I whispered, "So do I".


1. Charon, R. Narrative medicine - honoring the stories of illness. New York: Oxford University Press, 2006.

2. Ellis, K. Plenary on Close Reading. Advanced Narrative Medicine Workshop - Program in Narrative Medicine. College of Physicians & Surgeons of Columbia University, June 23, 2008.

3. Monroe A, Ferri F, Borkan J, Dube C, Taylor J, Frazzano A, Macko M. Doctoring. Providence, RI: Warren Alpert Medical School of Brown University, 2005-10.

4. Wald HS, Davis SW, Reis SP, Monroe AD, Borkan, JM. Reflecting on Reflections: Medical Education Curriculum Enhancement with Structured Field Notes and Guided Feedback. Acad Med, 2009; 84(7): 830-7.

5. DasGupta, S. Narrative Humility. Lancet, 2008; 371: 980-1.

6. Kerka, S. Journal writing and adult learning. ERIC Dig., 1996; 174:1-4.

7. Wald HS, Reis SP. A Piece of My Mind. Brew. JAMA, 2008; 299:2255-6.

8. Jacobus, L. [Accessed February 16, 2010].

9. Wald, HS. I've Got Mail. Fam Med, 2008; 40(6): 393-4.

10. Reis SP, Wald HS, Monroe AD, Borkan JM. Begin the BEGAN (The Brown Educational Guide to the Analysis of Narrative): A framework for enhancing educational impact of faculty feedback to students' reflective writing. Patient Educ Counseling, 2010; doi:10.1016/j.pec.2009.11.014.

11. Rabow MW, Remen RN, Parmelee DX, Inui TS. Professional Formation: Extending Medicine's Lineage of Service Into the Next Century. Acad Med, 2010; 85(2): 310-7.

12. Horowitz CR, Suchman AL, Branch WT, Frankel RM. What Do Doctors Find Meaningful about Their Work? Ann Intern Med, 2003; 138(9): 772-5.

Fostering Interdisciplinary Community: A Humanities Perspective

February 18, 2010 at 6:42 pm

Commentary by Jessica Howell, Ph.D., Wellcome Postdoctoral Research Fellow, Centre for the Humanities and Health, King's College London

Described as a "free destination for the incurably curious", the Wellcome Collection in London consists of several galleries, a cafe, bookstore and library. The library houses "collections of books, manuscripts, archives, films and pictures on the history of medicine from the earliest times to the present day". I knew that this particular library's holdings would be an invaluable resource for my research in the medical humanities, so I decided to pay the Collection building a visit, soon after I arrived in London this January. I was doubly interested because the Wellcome Trust, established by Sir Henry Wellcome's will in 1936 and meant "to advance medical research and understanding of its history", funded the Centre for the Humanities and Health at King's College London, where I hold my current position as postdoctoral research fellow.

I enjoyed the Wellcome Image Award gallery, which displays winning medical and historical images made by light and electron microscopy as well as illustration and photography. But I was perhaps most forcibly struck by "Medicine Man: The forgotten museum of Henry Wellcome", which exhibits objects from Wellcome’s personal collection. Sir Henry was apparently a dedicated gatherer of medical and anthropological artifacts and curiosities. Amongst the assortment are forceps, chastity belts, ceremonial masks, early surgical instruments such as bone saws, and even torture chairs. I found myself thinking of the exhibit for a long time afterwards. Imagine the research that could be done, and no doubt already has begun, on each of these object’s long, fraught histories, and what such research tells us about a culture's values, practices, even aesthetics. Because I found certain objects disturbing, I also felt responsible to pay even closer attention to what they had to teach me-about medicine's relationship with gender and race, as well as about common human experiences of birth, death, pain, suffering, and healing. I wished I had a medical doctor, artist and social scientist, amongst others, standing in the room, contemplating with me this window into complex and often troubling moments of human history.

Though I was alone at the Wellcome Collection itself, I am in the fortunate position of being able to participate in just such meaningful discussions in my role as Wellcome Research Fellow. I am part of a multi-strand program called the "Boundaries of Illness", convened in the Centre for Humanities and Health here at King's College. I work within a strand of this program titled "Nursing and Identity: Crossing Borders". For my project, I will examine the lifewriting of nurses traveling in the late nineteenth and early twentieth centuries under the auspices of the Colonial Nursing Association. I will analyze their work in terms of its implications for medical history, literary, postcolonial, gender and travel studies, and help to write a database for future researchers. To the research team at King's College, I bring a background in literary studies. I received my Ph.D. in English literature from University of California, Davis in 2007. My own work has been concerned with racial science and climate in nineteenth-century travel narratives. I applied to the research fellowship at King's partly due to my own long-standing interest in interdisciplinary scholarship and colleagueship. For example, while at UC Davis, I co-organized a medical humanities research group with Faith Fitzgerald (Internist and Professor of Medicine and Associate Dean of Humanities and Bioethics), and we also hosted two conferences on "Literature and Pathology."

Through these experiences, I have found that being part of an interdisciplinary scholarly community can enhance my own work in both tangible and intangible ways: on a pragmatic level, I produce better honed research when I analyze my arguments from alternate perspectives, testing the validity of my assertions outside of my own discipline. I may follow up leads provided by my colleagues that will take my work in new and creative directions. I also use research methodologies drawn from various academic traditions. Less measurable, but still critical to my work, are the interpersonal benefits: I find myself energized and encouraged when surrounded by scholars who have chosen this kind of study-speaking generally, I find that they tend to be more willing to explicitly discuss the ethical implications of their research, or even the underlying ideals and values they hold, such as human connection, compassion and understanding. Specifically, many of us in the interdisciplinary field of medical humanities believe that it is only through a meeting of the minds between biomedicine and other fields such as literature, art, philosophy and history that we can understand the experiences of patients and providers of care (roles that almost all of us will inhabit at some point in our lives). The Centre's website says it well: "Patient subjectivity and values - sometimes bundled together as 'the patient voice' - are expressed in a wide diversity of cultural objects and settings (texts, symbolic figurings rendered in portraits, films and in conceptual constructions), which it is the task of the Medical Humanities to identify, research and illuminate" (

As I have stated that I value my colleagues' diverse perspectives and the collaborative quality of interdisciplinary research, it would be remiss of me not to include the experiences of some of my King's coworkers. Dr. Rosemary Wall began her post in 2007, and so has seen the Centre develop through the stages of proposal, planning, and now implementation. She mentioned that it has been rewarding to help bring together scholars from within King's College and from other institutions who have common interests and complementary training, but may not have known each other or had the opportunity to share their ideas before (personal interview 2/4/2010). Ms. Elisabetta Babini asserts that, while "commitment to Medical Humanities" is "highly challenging", the field also has great potential to "broaden traditional research horizons." Both of my colleagues discussed the rich professional opportunities provided by their work in the Centre. As just one example, they are currently co-planning Screening the Nurse: Call to Service, a two-day event of talks and film screenings organized around the theme "British Nurses and Wars", hosted by the Florence Nightingale School of Nursing and Midwifery at King’s College in collaboration with the Imperial War Museum film archive (e-mail interview, 2/7/2010). These kinds of projects offer researchers in the medical humanities unique venues and opportunities through which to broaden their professional network and gain valuable cross-disciplinary experience, as well as to make their research accessible to the public. I am very pleased to have joined with the Centre in supporting its initiatives. Further, I look forward to sharing in the future some of my findings regarding nurses' writing, which I agree, with recent commentators Cortney Davis and Thomas Long, is a topic of ongoing interest.

1 For more on Sir Henry's personal collection, see An Infinity of Things: How Sir Henry Wellcome Collected the World by Frances Larson. (Oxford: Oxford Univ. Press, 10 Sep 2009)

2 Within the "Nursing and Identity" strand of this project, I am supervised by Professor Anne Marie Rafferty, Dean of the School of Nursing and Midwifery, and Dr. Anna Snaith, Reader in Twentieth-Century Literature. My co-researchers include Dr. Rosemary Wall, postdoctoral medical historian, and Elisabetta Babini, Ph.D. student in Film Studies/ Nursing, who both kindly agreed for me to include their comments.

Disease Causality

October 12, 2009 at 9:55 am

Obese man eating fatty and sugary foods. Photograph, Anthea Sieveking, Wellcome Images

Commentary by Daniel Goldberg, J.D., Ph.D. Health Policy & Ethics Fellow, Chronic Disease Prevention & Control Research Center, Department of Medicine, Baylor College of Medicine; Research Faculty, Initiative on Neuroscience & Law, Department of Neuroscience, Baylor College of Medicine

There is a legal doctrine known as "attractive nuisance." The basic idea of the concept, grounded in the law of torts, is that an owner or occupier of a premises can be held liable for negligence if they are responsible for a dangerous condition which is reasonably likely to attract vulnerable persons, such as children. Sometimes the medical humanities are for me akin to an attractive nuisance inasmuch as I tend to be easily distractible and scatter-brained, and thus can wallow in to deep pools before I realize I am well out of my "safe" zone.

Of course, practicing the medical humanities is not a nuisance at all; it is a privilege to be practicing, instead of merely rhapsodizing about the merits of, an interdisciplinary approach to health, illness, and medicine in society. But the privilege comes with significant danger as well, and I have of late become more impressed with the need to focus in on a few key areas which I hope to make part of my comfort zone. One of these areas of interest is disease causality.


Causation is one of those fecund topics whose enormous importance seems to surpass disciplines. A favored subject of antiquity, it remained central to Thomas Aquinas, Maimonides, and many of the other medieval scholars, to the early modern greats like David Hume and Immanuel Kant, and remains a critical subject in contemporary philosophy of science. Kant, whose epistemology is in my view often shamefully relegated to the background of his moral philosophy, was convinced that causation is a category of understanding, such that we cannot make sense of the phenomenal world without the concept.

But not only philosophers treat of the importance of causation, especially in context of medicine and illness. Medical anthropologists, for example, have long since pointed out that comprehending how a given community understands disease causality provides critical insight into the meaning of illness, suffering, life, and death. Anne Fadiman's well-used book, The Spirit Catches You and You Fall Down [1], is a nice instrument for teaching this point, as it seems inescapable that greater understanding (if not acceptance) of the Lee family's beliefs about Lia's illness experience would have greatly improved the family's medical experience.

As a self-identifying public health ethicist, my particular focus right now in thinking about disease causality is in the context of stigma. The history of stigma in context of illness can, to my mind, be traced back virtually as far as one wishes in Western civilization. (I believe it is reasonably prevalent in non-Western cultures as well, though I admit to a shameful level of ignorance on the specifics here). The reasons why stigma is so common in illness scenarios are multi-faceted, complex, and in my view have powerful explanatory capacity in conceptualizing health, illness, and disability. Fortunately for the able readers, as I have some work in review on the subject, I shall not be discussing it here (though some general thoughts on the subject are available on Medical Humanities Blog.

Disease Causality and Stigma: The Case of Fatness

What I want to suggest here are the connections between a particular notion of disease causality and stigma. One of the most obvious examples is the relationship between fatness and illness. As Gard and Wright [2] painstakingly documented in their fabulous 2005 book, the connections between fatness and disease are typically taken to be virtually certain among both lay and professional communities. And what are the consequences? That is, what results if we assert that type II diabetes, coronary artery disease, and cardiovascular disease, among others, are caused by fatness?

Of course, responding to the question of "what causes diabetes" by answering "fatness" is really a set of additional questions masquerading as an answer. Many of these questions turn on the differences between causes and risk factors, but to approach the issue of stigma, one must ask what causes fatness? (Naturally, to even speak of singular causes of intricate, nonlinear systems like disease in populations is absurdly oversimplified; one of the problems with causal attributions of illness in both lay and professional discourse is our general reduction of these complex systems to single, discrete variables. This is of course a hallmark of the Western scientific method, and the history of how we came to do so is, I think, quite important. But that is another post altogether.)

Life-style Model of Disease

In any case, what causes fatness? The usual answer turns on some fairly innocuous-sounding mishmash of genetics and environment, but the so-called model of disease causality here is often referred to as the "lifestyle" model. And lifestyle-type thinking is, particularly in American culture, deeply ingrained with notions of choice. We choose whether to pursue this lifestyle or that one; and so, in a very real sense, we choose whether to be fat. If fatness causes illness, it follows that we choose whether to be sick (with diabetes, coronary artery disease, etc.). This is in part why breathless reports of genetic linkages with fatness incite so much controversy - one of the perceived implications of such linkages is that individuals are not responsible for their fatness.

Of course, as I have noted on Medical Humanities Blog (see "On the Genetics of Jewishness"" and "On Genes & Diabetes Disparities", our discourses of genetic causation are problematic in a great number of ways, not least of which is the notion that "genes" actually cause anything at all in a linear sense. Genes do have causal effects, of course, but those causal effects are only produced through a complex system in which social, economic, cultural, and environmental factors profoundly shape expression. As Jeremy Freese has noted, the idea that the causality of an illness can be divvied up into x% - genes and 1-x% - environment is deeply mistaken [3]. Thus mere genetic linkages themselves are, from a causal perspective, not very interesting separate and apart from the inordinately complex systems through which they express (or do not).


One of the most compelling criticisms of the lifestyle model of disease is not that it is false; but rather, it is incomplete inasmuch as it pays no attention to the ways in which social and economic conditions substantially determine one's lifestyle choices. Even if we were to grant the exceedingly dubious proposition that fatness causes diabetes, drilling the causation down to individual lifestyle choices ignores, in my and many others' views, the robust evidence that lifestyles are primarily the product of social and economic conditions (the social determinants of health).

And of course, our model of disease causality is frequently embodied in how we regulate behaviors thought to cause illness. If one sees society as what Robert Jay Lifton termed a "biocracy" [4] as prevailed in the early 20th century in both Europe and the U.S., then the solution to the inherited "degenerate" behavior that produced diseases like insanity, mental retardation, and syphilis was to enact laws which precluded such inheritance. Alternatively, one could also support laws that precluded the "amalgamation" of "racial stocks" in which such degeneracy proliferated.

Similarly, if the cause of diabetes and CAD is perceived to be fatness, and the causes of fatness are unhealthy lifestyles, the perceived public health solution is to regulate such lifestyles, by, for example, strictly regulating the food available in school cafeterias, or requiring restaurants to print calorie information on their menus and web sites. In contrast, if the cause of fatness is perceived to be social and economic conditions, policy solutions would seem to fall much closer to ameliorating the conditions which seem to promote unhealthy lifestyles. (I hasten to remind readers that I am quite skeptical of the causal links between fatness and illness, but I assumed the validity of the attribution to take the point further).

In any case, disease causality is an important, and, in my view, understudied concept in the medical humanities, one that ties in quite deeply to notions of stigma, disability, and moral culpability for illness.

1. Anne Fadiman. The Spirit Catches You and You Fall Down (New York: Farrar, Straus & Giroux, 1997).
2. Michael Gard and Jan Wright. The Obesity Epidemic: Science, Morality, and Ideology (New York: Routledge, 2005).
3. Jeremy Freese. "The Analysis of Variance and the Social Complexities of Genetic Causation," International Journal of Epidemiology 35, no. 3 (2004): 534-36.
4. Robert Jay Lifton. The Nazi Doctors: Medical Killing and the Psychology of Genocide (New York: Basic Books, 2000).


Locating Narrative In Medicine’s Moral Domain: Notes (Musical And Otherwise) From A Recent Presentation

June 15, 2009 at 4:19 pm

A Group of Musicians

Commentary by Martin Kohn, Cofounder and Senior Associate for Program Development, Center for Literature, Medicine and Biomedical Humanities at Hiram College, and retired faculty, Northeastern Ohio Universities College of Medicine

My wife is a nephrologist. She loves kidneys (and how they function) almost as much as she loves me. We recently celebrated our 23rd anniversary. She's a deductive thinker par excellence. I'm a lateral thinker to the nth degree. When we argue she'll often exclaim, "I can't follow your train of thought." "What train?" I reply earnestly. Recently, she asked me (again), "can you define narrative for me?" "Not yet," I replied, buying a little more time.

In spite of working in the medical humanities for nearly 30 years I continue to struggle with explaining just what narrative is and how it permeates medicine's moral domain. So I recently agreed to a request to present grand rounds to the Bioethics Department at the Cleveland Clinic, forcing myself to ransack old notes and articles and catch up with at least a few developments in the field. I offer below a sampling of my presentation. The through line was:



I began this portion of the presentation with numerous claims about the centrality of words and stories in our lives: that they are as constitutive of the self as are our genes; that they preserve "the teller from oblivion." (1); that they are the foot soldiers of meaning; that they "do not simply describe the self, they are the self's medium of being. " (2); that narrative is a conveyance in which and through which we (and our words and stories) confront time, and that ultimately, meaning and sense filled words and stories, into which we are born and which are temporally borne by us, become our constructed truths about the world (noting that the root of the word narrative, "narr/gno," is after all, knowledge.).

Finally, I claimed that words and stories also make community possible. Community being formed by which bits of experience we choose to string together (to re-member, both individually and communally) and which we re-present as plotted events, connecting us to the unfolding drama of our shared lived experience.

Further exploration of the centrality of story in the work of physician-writers Robert Coles, Rachel Naomi Remen and Rita Charon was followed by a synopsis of creative writer, Scott Russell Sanders' essay, "The Power of Stories" (3).


After a brief exploration of Cassell's notion of "topology of person," (4), I focused on a more poetic treatment of the aspects of the person that appears in a poem by Billy Collins, "The Night House." The poem reveals the body's role-as "the house of voices"- in the experience of the person who lives in the moral lifeworld as that body, and who "Sometimes puts down its metal tongs, its needle, or its pen/To stare into the distance,/To listen to all its names being called/Before bending again to its labor" (5).

These voices (heart, mind, soul, conscience) in the body's house are arrayed below (with attributes I provisionally assigned them) where they serve as elements of the first of three tributaries flowing into moral personhood.


•The open (feeling) "heart"
•The curious (improvisational) "mind"
•The seeking (animating) "soul"
•The silvery (calculating) "conscience"


I shared with my audience a most delicious description of "character" which is, I believe, the primary vehicle through which moral reflexivity operates. The excerpt below comes from the novel, Mrs. Ted Bliss, by Stanley Elkin:

the constant, minute-to-minute routine of putting together a character, assembling out of little notes and pieces of the past-significant betrayals, deaths, yearnings, successes, meaningful disappointments, and sudden gushers of grace and bounty- some strange, fearful archaeology of the present, the Self to Now, as it were, like a synopsis, some queer, running quiddity of you-ness like a flavor bonded into the bones, skin, and flesh of an animal.


A (partial) list of the reflective frameworks appears below:

•Juridical: Study of the rational application of principles as action guides. Morality is seen as a body of knowledge. (7)
•Narrative: Study of voice and authority, point of view, coherence of story, co-construction of story, narrative frameworks of illness stories, etc. Morality is seen as a continual interpersonal task done by all in the community. (7)
•Care: Study of what empathy calls forth from us
•Feminist: Study of systemic/historic power imbalances and calls to challenge those imbalances
•Communicative: Study of the distortion of free communication /attempts to remediate those imbalances
• Naturalized: "Minimally, naturalism in ethics is committed to understanding moral judgment and moral agency in terms of natural facts about ourselves and our world." (8).

Combining these tributaries into EMBODIED BEING AND DOING produces movement, a kind of flowing moral lifestream that conveys a style or action that contains a certain musicality to it. So I searched for two musical examples to visually and aurally illustrate what I meant by musicality. The first example is a rendition of Johnny One Note (The ads will disappear after about 30 seconds, if you try to remove them the video starts over). The second example features the song Libertango by Astor Piazzolla (originator of the Nuevo Tango style, who plays the bandoneon, a folk instrument related to the accordion, with an ensemble including Yo-Yo Ma).

Johnny One Note is a show tune from the 1937 Rodgers and Hart musical Babes in Arms. Title, lyrics and in this instance, performing style, all align (for me) as a critique of the hegemonic "principlist" approach to moral analysis of medical issues. Featured in this rendition of Johnny One Note is Johnny Mathis (as an alpha male!) surrounded by the adoring Lennon Sisters, backing him to the hilt as he gives his all for ONE NOTE (autonomy?). In contradistinction, Libertango is polyrhythmic, featuring layered and shifting voices and is multi-genre, a mix of classical and jazz and folk music. It represents well the "multiple tributaries" approach that revels in the complexity (and beauty) of the moral lifeworld that I advocate.


To finish my presentation, I turned to two works, "The Narrative Quality of Experience, by Stephen Crites (9); and Gerald Gruman's A History of Ideas about the Prolongation of Life (10). Stephen Crites was a philosopher and a scholar of religion with special interests in the connection between narrative and experience. His work emanates from and illuminates the point at which experience and action interpenetrate, where narrative becomes the vehicle through which consciousness temporally expresses experience; and where simultaneously our actions take on a particular musicality in response to the expressed stories we live our experience out of. (How do we label the iconoclast/the oddball, one who doesn't live by the conventional expectations or stories of our culture? We do so by saying that they "march to the beat of a different drummer.")

Most pertinent to the focus on community are Crites' contentions about sacred and mundane stories. He explains: "people live in [sacred stories which] are anonymous and communal… [that] orient the life of people through time, their life-time, their individual and corporate experience and their sense of style, to the great powers that establish the reality of their world…[ this makes, he claims] every sacred story a creation story…the story itself creat[ing] a world of consciousness and the self that is oriented to it" (pp. 295-6). He further explains that these sacred stories are always present in some way in the mundane stories [and that] "people are able to feel this resonance; because the unutterable stories are those they know best of all" (pp.296-7). He believes that "the stories people hear and tell, the dramas they see performed, not to speak of the sacred stories that are absorbed without being directly heard or seen, shape in the most profound way the inner story of experience"(p. 304).

Crites anticipated (he was writing during the late 1960's) a conversion of consciousness that reflected a cultural shift into post-modernity. Evidence for the shift would be found, he explained, in "a traumatic change in man's story" (p. 307), wherein the stories to which he has "awakened to consciousness must be undermined… [and] through a new story both the drama of his experience and his style of action must be reoriented… he must dance to a new rhythm… [for] the very cosmos in which he lives is strung in a new way" (p. 307).

I took Crites' notion of sacred stories and shift of consciousness and set them within the work of another philosopher, Gerald Gruman- challenging us to consider that the shift in consciousness that Crites was sensing about 40 years ago, has now reached a critical point.

In his classic work, A History of Ideas about the Prolongation of Life (published five years prior to Crites' article), Gruman provides ample evidence of the human yearning for immortality, citing numerous examples across time and cultures; however, he also describes an alternative historical-cultural phenomenon: acceptance of our body's limitations. He presents his evidence of these two urges through two conceptual domains: the Meliorist camp, i.e. the 'we can continuously improve the human condition' folks, and the Apologist camp, i.e. the 'we need to accept ourselves the way we are' people.

These camps, and both of these human urges, are in tension- and I would argue are competing sacred stories about immortality. The meliorist camp promotes solipsistic immortality; the apologist camp supports species immortality. H. R. Moody, philosopher and humanistic gerontologist, has offered two similar framing concepts: one, aligned with a sacred story of progress and human control over nature, he labels 'techno-utopian mastery'. (11) Aligned with the sacred story from the apologist standpoint of mystery or acceptance of our place in the natural order of the world is his 'ecological vision of aging'a"where youth and age are…. accepted as part of the natural life cycle" (p. 33).

AIA offered to my audience a neologism to describe a synthesis of the two sacred stories -the one grounded in mystery and reverence, the other grounded in mastery and control. The word I coined is eco-meliorism. It grew out of a new sacred story, the one to which I believe our consciousness is awakening- sustainability- and which I define as the careful (even slow) movement toward human betterment in light of human presence in ongoing, interrelated natural systems.

Sustainable Health

There is evidence that we in medicine (and our larger community) are beginning to live within the sacred story of sustainability, developing interesting syntheses that emanate from an eco-meliorist approach. I would include in this list hospice and palliative care, the Eden Alternative in nursing homes, and the Planetree organization. There's also movement toward the sustainability story in science- Bioneers (whose motto is "revolution from the heart of nature") , green chemistry, and the adoption by some of the "precautionary principle." In our larger society there are other examples of eco-meliorism including the slow food movement and even a call for slow money, such as that advocated by Woody Tasch. (See his book, Inquiries into the Nature of Slow Money. Investing as if Food, Farms, and Fertility Mattered).A All of these endeavors point toward a new sacred story of sustainability, toward stringing our cosmos in a new way, toward waking up into a new consciousness, toward marching to the beat of a different drummer.

Wallace Stevens wrote the poem "Six Significant Landscapes" nearly 100 years ago (12). I ended my presentation (and now this blog entry) with its final verse and with a question: How might we live and practice and think differently if we lived in different "rooms", if we changed not only our physical habitat, but also our narrative habitat? (And now, I think I'll grab a glass of wine, put on my sombrero, and read the poem to my wife….)

Rationalists, wearing square hats, / Think, in square rooms, / Looking at the floor, / Looking at the ceiling. / They confine themselves / To right-angled triangles. / If they tried rhomboids, / Cones, waving lines, ellipses — / As, for example, the ellipse of the half-moon — / Rationalists would wear sombreros.


1. Portelli, Alessandro. The Death of Luigi Trastulli, and Other Stories: Form and Meaning in Oral History. (Albany, N.Y. : State University of New York Press) 1991, p. 59

2. Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. (Chicago: University of Chicago Press) 1995, p. 53

3. Sanders, Scott Russell. The power of stories. Georgia Review, 1997; 51:113-26.

4.Cassell, Eric J. The Nature of Suffering and the Goals of Medicine. (New York: Oxford University Press) 1991, p. 47

5. Collins, Billy. Picnic, Lightning. (Pittsburgh, Pa.: University of Pittsburgh Press) 1998, p.80

6. Elkin, Stanley. Mrs. Ted Bliss. (New York: Hyperion) 1995, p. 55

7. Lindemann Nelson, Hilde. Context: backward, sideways, and forward. In Charon, R., Montello, M., eds. Stories Matter: The Role of Narrative in Medical Ethics. (New York: Routledge) 2002

8. Walker, Margaret Urban. Introduction: Groningen naturalism in bioethics. In Lindemann, H., Verkerk, M., Walker, M.U., eds. Naturalized Bioethics: Toward Responsible Knowing and Practice. (Cambridge and New York: Cambridge University Press) 2009, p. 1

9. Crites, Stephen. The narrative quality of experience.A Journal of the American Academy of Religion, 1971: 39:291-311

10. Gruman, Gerald J. A History of Ideas about the Prolongation of Life: The Evolution of Prolongevity Hypotheses to 1800. (Philadelphia: American Philosophical Society) 1966

11. Moody, H.R. Who's afraid of life extension? Generations, 2001-02; xxv: 33-37

12. Stevens, Wallace. Harmonium (New York: A. A. Knopf), 1993, p. 100

Walking The Dog: Incorporating Poetry To Help Learners Connect With Relationship-Centered Care

April 30, 2009 at 10:06 am

Satirical scene with doctor diagnosing well to-do man with Diabetes
Commentary by Johanna Shapiro, Ph.D., Professor, Department of Family Medicine and Director, Program in Medical Humanities & Arts, University of California Irvine School of Medicine

Theories of relationship-centered care

The concept of relationship-centered care (RCC) (1) and the related theory of human interaction designated Complex Responsive Processes of Relating (2) remain exceptionally fruitful ways of thinking about doctors and patients. Relationship-centered care includes attention to the personhood of both doctor and patient, as well as their respective roles; awareness of the importance of emotions in both the patient and the doctor; and recognition of the reciprocity of influences from both doctor and patient (and from the wider healthcare system and society itself) on the relationship itself (1,3,4). RCC challenges the notion of compassionate detachment and instead explores connection and engagement with patients as the most appropriate and moral foundation for relationship.

The theory of Complex Responsive Processes of Relating (2) highlights the nonlinear, reciprocal, and self-organizing nature of human interaction. It specifies that patterns of meaning and relating are co-created continuously throughout the communicative encounter; and that such patterns may repeat themselves, or due to the introduction of "novelty," may develop spontaneously in new directions. As Suchman writes, "the development of new patterns depends upon the diversity and the responsiveness in the interaction." (p. S42). In other words, encounters between doctors and patients that allow, even invite, variety and divergence from unprofitable patterns are most likely to evolve into more meaningful and more authentic ways of being in relationship, which ultimately serves patient well-being. This view acknowledges that patients as well as physicians exercise continually shifting power in the encounter; and therefore physicians have limited control in terms of outcomes.

Implications of RCC/CRPR for "noncompliance"

Although RCC and CRPR have implications for all aspects of the patient-doctor encounter, they are especially relevant in situations of perceived patient "noncompliance." Advances in social science research have helped challenge simplistic conceptualizations of adherence and compliance, in which doctor-patient communication consists of the doctor prescribing medication and the patient taking it. More recently scholars have introduced the term "concordance" to indicate the complex processes that must occur between physicians and patients in order to result in patient cooperation with the prescribed treatment regimen (5). For example, concordance implies an open exchange of ideas, rather than top-down orders, and focuses on both physician and patient values and priorities, rather than on those of the patient alone.

Nevertheless, walking the corridors of a contemporary hospital of clinic, one rarely hears reference to "lack of concordance." Chart notes still read, "Patient noncompliant with medication," with all the frustration and patient blame this term has come to imply (6). Neither do we often hear clinicians contemplating the implications of their diabetic patients' - or their own - emotional responses to their disease for the meaningfulness of future patient encounters; nor the applications of complexity theory to patient compliance. On these significant dimensions of interaction around diabetes care, as in so many other aspects of medical education, the gap between the formal and the hidden curriculum remains pronounced (7). In my comments below I will focus specifically on current attitudes of physicians and students toward the management of diabetic patients; and how the use of a poem can help learners clarify principles of RCC and CRPR that are pertinent to adherence/compliance dilemmas.

The frustrating case of diabetes

In the diabetic patient population, noncompliance is a widespread (and ill-defined) problem, with estimated rates ranging from 30-80%. The inability to "control" the patient, and therefore "control" the patient's blood sugar, is a source of substantial exasperation, even despair, among physicians. Yet one study (6) found that, despite physicians' awareness of the complex constellation of psychological and social factors that constitute obstacles to treatment, they routinely failed to address these issues in clinical encounters, relying on directive, one-way communications about numerical monitoring and outcomes. In other words, these physicians persisted in a linear, cause-and-effect, power-down communication model that ignored the complexity, emotionality (in themselves or their patients), spontaneity, and power fluctuations that occur continuously between doctor and patient. In another study of physician attitudes toward poor compliance in patients with diabetes, it appeared that doctors relied primarily on shock, pressure, and the threat of hospitalization to influence patients toward improved compliance, as defined by the physician (8).

Medical students as well can cling to the straightforward, linear models of communication that are often mistaken for patient education in the management of diabetes. Their focus (understandably, from their perspective as learners), is on diagnosis of the physical ailment. Once this is achieved, the rest seems easy to them: the doctor tells the patient what to do; and the patient, who naturally wants to recover, does it (9). One study noted that, in actual encounters with patients with diabetes, the most frequently reported challenge to student worldviews was how to achieve patient compliance (10). It does not require a great leap to expect that these students will likely become patronizing, directive, yet also despondent and frustrated physicians.

Poetry to the rescue?

While it is obviously crucial to help students rethink their assumptions about and gain insight into the relational foundation of medicine and the complex nature of communication, especially around the issue of compliance, the methods for doing so remain unsettled. By definition, RCC and CRPR are intricate, multifaceted constructs at variance with more simplistic mechanistic models of doctor-patient interaction, and this suggests that the ways of developing conversations addressing them must be versatile as well. Under these conditions, literature and poetry may well have a role to play in helping students develop more critical, self-aware thinking about relationship in general, and in particular about the process through which patients and physicians achieve concordance regarding drug and lifestyle regimens. To illustrate this point, I would like to consider John Wright's wonderful poem "Walking the Dog," (11) and how it clarifies and concretizes aspects of both RCC and CRPR, as well as complexifies students' thinking about patient compliance.

Walking the dog

In "Walking the Dog," a doctor looks at an old problem - an overweight patient with diabetes - in a new way. The doctor is frustrated - obesity and high blood sugars are killing his patient. He turns the problem over and over in his mind. What can he do? At last he has an epiphany - he will give his patient a little dog that she can walk, thereby providing her with much-needed exercise, that will in turn lower her weight and her sugars, and prolong her life. And, like the conscientious physician he is, he prescribes the puppy in a precise dosage: the animal must be walked twice a day!

At this point in the poem, the author (himself a physician) has already caught our attention. Prescribing a pet! This unusual approach helps students think outside the box in terms of innovative therapies. It also is an excellent illustration of the CRPR principle that patterns of meaning and relating are continuously created, and that while they may exhibit stability, sometimes new patterns arise spontaneously (novelty). At this point the students think they "get the message": treatment can involve something more than medication. Be bold, be daring! They can "tell" their patients to take a walk! They admire the physician for being so creative. But the author provides an additional twist (yet more novelty). To their chagrin, the students discover that the treatment doesn't work, at least not in the way the doctor thought it would. As it turns out, while the patient is delighted with her little puppy and cuddles it affectionately, it is her "lean" husband who "faithfully" complies with the prescription of twice-a-day dog walking. Twelve years later, happy but presumably still obese and still diabetic, the patient dies.

The narrative arc of the poem is so unexpected that it inevitably provokes a chuckle. Nonetheless, it is troubling to students on several counts. First it turns the concept of compliance on its head by showing that, in the poem, the compliance achieved is perfect but meaningless because the wrong person is doing it. This nonsensical take suggests that compliance is only one aspect of the encounter between patient and doctor and should not always be regarded as the only measure of success. Both the narrator (and we, the readers) have to grapple with the fact that patients don't always do what doctors tell them to do. In CRPR terms, students learn that doctors do not have omnipotent control over their patients. In discussing why the patient may have been unable to or uninterested in walking her puppy, students realize that following "what the doctor says" is influenced by many factors; and that while the physician's power may be rooted in expertise, in this case the patient has her own power, and exercises it by choosing a relationship with the puppy that is very different than the one the doctor envisioned, but one that nevertheless brings her joy.

In one final twist, the poem's artistry offers an additional puzzle. Somehow, despite the physician's initial frustration, despite the failed prescription, despite the ultimate demise of the patient, this is a gentle, bemused, and humble poem that effectively conveys the value of the doctor's caring and concern for his patient. From an RCC perspective, the poem shows us a doctor, patient, (and spouse) who are not simply roles, but people with emotions, idiosyncracies, frustrations, and affections. The narrator, for example, is well aware of both his own emotions, and those of his patient, and he is not afraid to introduce novelty to attempt to create new patterns in the situation.

Perhaps one of the most important lines occurs early in the poem, when the doctor realizes that his patient's health is deteriorating and that, so far, he hasn't been able to save her. At this point the narrator says, "So/I thought." This line illustrates the self and situational awareness that CRPR and RCC both advocate. By reflecting on his own and his patient's limitations, and the exasperation he feels at these constraints, the physician is able to develop empathy. Unwilling to give up or emotionally abandon his patient, he also resists giving in to his own annoyance and helplessness. Instead he keeps trying. In CRPR terms, the physician approaches his patient's "noncompliance" with curiosity, compassion, and more than a modicum of humor, rather than fear and defensiveness. Rather than burden himself with self-blame and guilt (the consequences of unrealistic control aspirations), he simply remains open to the possibility of change. And apparently he remains open for twelve years. Did he achieve better A1C numbers in his patient? Did he extend the patient's life? The poem is silent on these questions. But most students feel that doctor and patient shared a precious partnership, and that the physician's position in relation to the patient was fundamentally a moral one.


Prose and poetry have an important contribution to make in helping medical students engage with the abstractions of conceptual theories such as RCC and CRPR even as they wrestle with the challenges of issues such as adherence/compliance. Of course, the relational and communicative questions raised by RCC and CRPR play out daily between doctors, medical students, and patients, and obviously such encounters provide fertile soil for examination. Physician educators (12) have crucially advocated, and rightly so, for real-time, moment-by-moment awareness of actual clinical process. But just as Dr. Wright found value in retrospective reflection about himself and his patient, so too can students benefit from teaching experiences in which the priority is stimulating critical awareness, as well as the multi-tasking reflection that is required at the bedside. Through humanities teaching such as I have described above, the ways of perceiving and being that RCC and CRPR encourage become increasingly accessible and meaningful to students, and help create and sustain "attitudes of readiness" that, in turn, will seamlessly interface with and support their "real" lives as burgeoning physicians.

1. Beach MC, Inui T, and the Relationship-Centered Care Research Network. Relationship-centered care: a constructive reframing. Journal of General Internal Medicine, 2006;21:S3-8.

2. Suchman AL. A new theoretical foundation for relationship-centered care: complex responsive processes of relating. Journal of General Internal Medicine, 2006;21:S40-45.

3. Frankel RM, Inui TS. Re-forming relationships in health care. Journal of General Internal Medicine, 2006;21:S1-2.

4. Duffy FD. Complexity and healing relationships. Journal of General Internal Medicine, 2006;21:S45-46.

5. Chatterjee JS. From compliance to concordance in diabetes. Journal of Medical Ethics, 2006;32:507-510.

6. Wens J, Vermeire E, Van Royen P, Sabbe B, Denekens J. GP's perspectives of type 2 diabetes patients' adherence to treatment: a qualitative analysis of barriers and solutions. BMC Family Practice, 2005;6:20

7. Hafferty F, Franks R. The hidden curriculum, ethics teaching, and the structure of medical education. Academic Medicine, 1994;69:861-71.

8. Freeman J, Loewe M. Barriers to communication about diabetes mellitus. Patients' and physicians different views of the disease. Journal of Family Practice, 2000;49:507-12.

9. Anderson RM, Robins LS: How do we know? Reflections on qualitative research in diabetes. Diabetes Care, 1998;21:1387-1388.

10. Mitchell A, Paul TJ, LaGrenade J, McCaw-Binns A, Williams-Green P. Assumptions about disease treatment challenged in a family health clerkship: views of first clinical year medical students. Education Health, 2005;18:14-21.

11. Wright JC. Walking the dog. In Belli A, Coulehan J (eds). Blood & Bone: Poems by Physicians. (Iowa City: University of Iowa Press) 1998, p. 55.

12. Weissmann PF, Branch WT, Gracey CF, Haidet P, Frankel RM. Role modeling humanistic behavior: learning bedside manner from the experts. Acadamic Medicine, 2006;81:661-7..

Here I Am and Nowhere Else: Portraits of Care by Mark Gilbert at the Intersection of Art and Medicine

March 27, 2009 at 9:47 am

Oil on Canvas painting of man with disability in wheelchair with variety of  technologies to assist him

Commentary by Virginia Aita, PhD, William Lydiatt, MD, Mark Gilbert, BA (artist), Hesse McGraw, MA and Mark Masuoka, MFA


AThe exhibition "Here I Am and Nowhere Else: Portraits of Care" explored 45 individual’s experiences with health, illness and caregiving. Three-thousand people attended the inaugural ten-week exhibition of the works that concluded on February 21, 2009 at the Bemis Center for Contemporary Arts in Omaha, Nebraska.A The exhibition arose from a qualitative research study that two of the authors, V.A. and W. L., designed with Scottish artist Mark Gilbert for his two-year residency at the University of Nebraska Medical Center (UNMC). The study, approved by the UNMC Institutional Review Board, included a number of stagesA from the design phase to the recruitment of patient and caregiver subjects, to Gilbert’s active drawing and painting phase, and finally to several stages of analysis and most recently to the exhibition of works.A The findings of the study will be published elsewhere, but we thought blog readers would be interested in knowing about the exhibition and how, as contemporary art, it played a role in helping exhibition viewers engage in an ongoing conversation about the nature of health, illness, care and the challenges, both professional and familial, of caregiving in our society. The exhibition included portraits of 25 patients from across the lifespan representing many varied situations on the spectrum of health and illness and 20 caregivers, both professional and familial.A The portraits served as a focus of conversation during the exhibition and a series of organized lecture-discussions about issues raised by the paintings. We describe below what transpired as we considered Gilbert’s large drawings and paintings that revealed obvious and subtle truths about health, illness, care and caregiving.

The Idea of Care and the Role of Contemporary Art

AOne of the important ideas that arose from the earliest analysis of the drawings and paintings of patients and caregivers was the idea that care is a non-instrumental, holistic process of personal engagement.A We also discovered that the boundaries of this engagement were not as defined as we had originally assumed-all human beings share in the experience of care and caregiving-sometimes as a patient, sometimes as a caregiver, and sometimes as both at the same time. This realization was further strengthened by patients’ willingness to participate in the study in order to "give back" so that others might learn from it.

As the exhibition drew closer, we knew that we wanted to explore the engagement that happens in the transfer of care between patients and caregivers.A To do this, we realized that framing the ideas we wanted to explore would be important.A At the same time, we wanted to encourage the public to join in the discussion.

To frame the important ideas, we invited the public to a pre-exhibition reception and evening of short background lectures the night before the actual gala opening of the exhibition at the Bemis Center for Contemporary Arts. The first brief remarks were made by project investigators about the origin of the project.A Following this, the Director of the Bemis Center for Contemporary Arts, Mark Masuoka, spoke on the role of contemporary art in society and in particular about the role of this exhibition in the on-going national discussion about health care.A He was followed by artist Mark Gilbert who spoke about his experience working as an artist-in-residence within a medical center with patients and caregivers. Finally, Emeritus, US Poet Laureate, Ted Kooser spoke about his experience as a patient featured in the exhibition.A Kooser then read a selection of poetry about his encounter with illness helping to focus the events that would follow during the exhibition.

The opening lectures set the stage for a series of three gallery discussions that took place every other week during the exhibition itself when we invited a speaker or panel of speakers to share with the audience their insights and experience about care relative to the drawings and paintings.A After each had spoken, the speaker(s) opened the discussion to the audience so that a give-and-take conversation about the topic could take place.A We held the lecture-discussions in the gallery itself, with the portrait works all around us.A Attendance varied between 80 and 150 participants.

The Lecture/Discussions

Patients and caregivers

For the first lecture-discussion on January 15, 2009, we invited a panel of patients and caregivers to talk about their experiences with the portrait project and we asked how it had influenced them in thinking about their roles, whether as a patient, a caregiver or both.A Two patient subjects spoke. One had undergone bariatric surgery for the purpose of health promotion while the other had been under treatment for brain cancer over a period of 10 years. Of the two caregiver subjects who spoke, one was a familial caregiver, the other a physician.A Panel members spoke about five minutes each about their experiences of being drawn or painted and then reflected on the meaning of it in their lives. The patients both stressed how the artist had succeeded in seeing them as whole people, not just physically but psychologically intact and the importance of that for effective care to take place.

Jove, a nearly blind African American, spoke about the importance of the project in helping to break down all kinds of barriers that prevent us from seeing, appreciating, and caring for another. The caregivers spoke about the impact of the project in helping them see and be responsive to the whole person (the patient). Dolores, Roger’s wife told of his belief in the importance of the project to help others overcome their fears of the ill.A He wanted to help care for others, even in his own debility caused by ALS so that they might learn more about the importance of personal engagement in care.A She said only as she understood the meaning of the project for her husband did sheA comprehend its importance and relationship to what she was doing in caring for him. The physician caregiver commented that the project had highlighted the importance of the bond that exists between patients and caregivers and had affirmed for him the importance of loyalty to the patients he serves.

Following these comments, we passed the microphone among members of the audience and many reiterated the importance of the relationship that exists between the ill and those who care for them-emphasizing that it is the relationship that is the heart of care as it unfolds in the doing of care.A Several people also raised the issue of how difficult it is both to be the recipient of care as well as the giver of care.A They spoke of our human condition that must yield to being both giver and a receiver of care, at different times or sometimes, at the same time.A Both roles are difficult and demand changes in who each is as a person, in personal identity, the topic of the second lecture -discussion.


On January 29, 2009 Dr. Carl Greiner, a psychiatrist, spoke about the introspective nature of the portraits and what they imply about the nature of care and its relationship to personal identity. Walking from painting to painting in the softly lit gallery he engaged audience members in observing and explaining what they saw in the drawings and paintings. For example when he focused on one large almost 6’X6′ painting of the head of a bald young man nearing the end of his life despite chemotherapy for cancer, Greiner discussed what the audience’s observations implied about the patient’s psychological state and probable hopes, fears, and transformation due to illness.A This portrait is so compelling that it brought out psychological responses of audience members who articulated their own fears of cancer and death as they sat face-to-face with the raw truth of this young man’s life and imminent death.A In the communal and safe space of the gallery viewers engaged with others in the audience to articulate the most basic of human fears that were roiling within them. Greiner emphasized that the psychological and emotional states observable in the portraits and within us as viewers represent the common threads of our shared humanity.A When patients and caregivers interact in the transfer of care at such a level of shared, common experience, the identity of both is transformed.

Artist, curator, director perspectives

The final program on February 12, 2009 featured a panel with the artist, the curator of the exhibition, Hesse McGraw, and the Director of the Bemis Center for Contemporary Arts.A In this presentation, Gilbert spoke from the artist’s point of view, emphasizing the effect that the project had upon him.A Reflecting some of the discussion at Greiner’s presentation, Gilbert spoke of the difficulty he sometimes had in continuing with the work day-to-day, so powerful had its effects been for him as he worked with patients at critical times during their lives. The caregivers also had a profound effect upon Gilbert as he felt in some manner the gravity of the work they do. As the project proceeded he found that these challenges, far from being a hindrance, were to prove the driving force in the creation of the images. Gilbert spoke of the variety of powerful emotions and states of being that he was "privileged" to witness and tried to harness.

McGraw followed Gilbert and spoke from the curator’s point of view about presenting the work to the public. He pointed out that the portraits show the basic things that are needed to build a relationship in care such as trust and respect, but added that these portraits go far beyond that to tell intimate stories in a context of care. Using this idea, he then went on to ask those in attendance how the portraits might change our notions of what medical care in the contemporary world could be. AThen Masuoka spoke from the Director’s point of view about the role of contemporary art in highlighting and informing pressing societal issues, particularly health care. He said that art has the capacity to "kill" false assumptions that lead society down false paths.A He argued that this project, as contemporary art, has the capacity to inform viewers about what care is at a human level, and to inform viewers about what care should entail.

As we enter into a national conversation about healthcare reform, an exhibition such as this is important, he said, in helping the public to address what is critical to the enterprise.AA If the views of McGraw and Masuoka are valid, and we believe they are, contemporary art carries a heavy responsibility. Yet as the microphone was passed about the audience of more than 180 people, it was clear that audience members had engaged with these heavier questions about the role of health care in our society.A It was equally clear that for those in attendance, the most critical element of care is the human element.A This of course does not eliminate the need for the more technical medical and surgical aspects of care, but emphasizes that humane judgment in the doing of care is essential.


We have found our collaboration bringing contemporary art and medicine together to be extremely rich as both a research model and as an educational approach to explore the meaning of health, illness, care and caregiving. The exhibition of portraits of patients and caregivers and the related lectures and discussions about issues germane to the portraits have helped all who participated in these events learn a great deal. Our future plans are to tour the exhibition, along with an accompanying curriculum that can highlight important ideas that arise from it.A An exhibition catalogue is also available that includes reproductions of the artworks and essays written by the project originators, the artist, the curator and Bemis Director and others as well as by a select number of patients and caregivers all of whom provide varied perspectives. We are in the process of assembling a package that will allow the exhibition art works, curriculum, and catalogue to travel to other venues to be shared. For more information, please contact either Virginia Aita (vaita at unmc dot edu) AAAor the curator Hesse McGraw atA hesse at bemiscenter dot org.

Virginia Aita, RN, MSN, PhD is Associate Professor in the College of Public Health, Department of Health Promotion, Social and Behavioral Health, University of Nebraska Medical Center (UNMC), Omaha, Nebraska

William Lydiatt, MD is a Professor of Head and Neck Surgical Oncology at the Nebraska Medical Center, UNMC, and Nebraska Methodist Hospital, Omaha, Nebraska

Mark Gilbert, BA completed a 2-year Artist’s Residency at the University of Nebraska Medical Center, Omaha, Nebraska and currently practices art in Glasgow, Scotland

Hesse McGraw, MA is Curator at the Bemis Center for Contemporary Arts, Omaha Nebraska

Mark Masuoka, MFA is the Director at the Bemis Center for Contemporary Arts, Omaha, Nebraska

Acknowledgements:A We wish to thank the following for their support of the exhibition, associated program and catalogue:

The Nebraska Medical Center
The Division of Head and Neck Surgical Oncology in the Department of Otolaryngology-Head and Neck Surgery
The College of Public Health
Omaha Steaks
The Nebraska Arts Council
The National Endowment for the Arts


March 10, 2009 at 9:10 am

The Slow Death of Rose

Commentary by Joyce Cutler-Shaw, artist; Artist in Residence, School of Medicine of the University of California San Diego

History is story telling with images embedded in memory. The history of anatomy is a history of human representation: how we are seen and how we see ourselves. Visual images are continually shaped and re-shaped by the enthusiasms and preconceptions of the present. The visual representations of the history of anatomy are an extraordinary record of our evolving self-images, public and private, cultural and social. As historian Martin Kemp has written, in observing the connections of medical science and art, "No field is richer in metaphor than the body." (1)

Body representation has been a significant feature of human visual culture from stick figures and handprints of pre-historic cave paintings to medieval illustrations; from Renaissance drawings of human dissection by artist/anatomists from Leonardo da Vinci to George Stubbs; from Rembrandt to Thomas Eakins; from the early 20th century European disease study waxes to the newest, digitally developed, life-like models with touchable, veristic, simulated wounds for training battlefield first responders - and from the virtual body of the Visible Man to the artist Virgil Wong‘s eponymous "Pregnant Man." Arthur Danto has written in The Body/Body Problem, that representation "brings something to the world it would otherwise lack - a point of view, with reference to which objects are transformed into instruments and obstacles and hence, systems of meanings." (2) Exploring across the disciplines of art and medicine I have discovered the medical field to be an arena for the newest forms of body representation. It is at the intersection of art and medical science that new insights in interpreting the physical self can emerge. Moreover, no field confronts issues more contentious than the medical such as when life begins and when it ends, and the limits of normalcy and the aberrant.

The Anatomy Lesson

My project titled, The Anatomy Lesson, is inspired and informed by my role as Artist-In-Residence at the School of Medicine of the University of California San Diego.A UCSD has been a leader in medical humanities and the first medical school nationally to appoint a visual artist for an independent fine art residency. I am honored to have been selected. The Anatomy Lesson is an exploration of the physical self and the human life cycle from birth through the process of aging and death- an odyssey of individual transformation common to all living things. It is also an investigation since 1994, of aspects of the history of anatomy by visiting great medical collections in our country, in Europe, China and Japan.

Medical models have depicted and re-shaped our body image through the centuries. The medieval cosmological metaphor of Zodiac Man was astronomically determined when we were creatures of humours and bile. The 16th century anatomist, Vesalius, and others of that time, made an argument for anatomy as a holy and divine art. Interpreting anatomy within a theological context was to "seek to 'know thyself’ by recognizing that God is present within the human body."(3) We were worthy of study and the body was open to investigation in order to understand the secrets of life. With the Renaissance and the emergence of the practice of dissection - of the "open body" - artists began to depict the anatomical figure, in human scale, as dynamic and dimensional. Leonardo da Vinci, pivotal artist and anatomist of the 16th century, opened the body labyrinth, even to initiating the anatomical positions and the cross section -which are still standards today. He drew the open torso as a body fragment with the fetus in utero, umbilically connected and close to term. Studying the body in specialized sections is current medical school practice, just as medical specialization is standard practice in contrast to holistic medicine.

Fragmented Body

Fragmentation is typical of the postmodern period as historian Linda Nochlin argues in her book, The Body in Pieces. (4) I have seen recent medical texts without a single whole body image.

In the 18th century gifted Italian craftsmen and a noted woman, Anna Morandi Manzolini, a professor of anatomy, an unusual role for a woman at that time, created life-size and life-like figures of painted wax with the texture of skin. They are still on display in medical collections at the University of Bologna, La Specola in Florence and the Josephinum in Vienna, Many were presented in the typical seductive poses of their time, as a reclining male odalisque, a "vein man," and as a reclining female nude, her arm gracefully bent beneath her head, with long blond hair, earrings and necklace of pearls, with open eyes and open abdomen.

Historically, the anatomical model has been male. Anatomical depictions of women have featured the uterus, often with fetus in utero, as childbearing remains a primary interest in women’s bodies, even depicted without the woman. Before the 14th century, when life and death formed a unity, medieval woodcuts depicted the fetus as a miniature person - a little adult - fully formed and seemingly, free standing. As the practice of dissection emerged the anatomical figure was presented in human scale, as dynamic and dimensional, with a search for physiological precision. The nineteenth and early twentieth centuries, brought the X-ray and metaphors of transparency. The surprise discovery of 1896, the X-ray, the "new light" as it was called, revealed for the first time, the hidden recesses of the living body. I traveled to Dresden to the Hygiene Museum to see the first transparent "Visible Woman" which revealed internal body parts. She is molded in the yellowing hard plastic of the early 20th century and placed on a pedestal with arms upraised. She is life-size. Contemporary models in the art and medical worlds raise new issues of human scale, as it escalates in the postmodern period to the gargantuan.

Today we can walk the 50 foot length, head- to- toe, of a contemporary anatomical model at the California Science Center in Los Angeles. Called "Tess," a glowing red light illuminates the interior architecture of the enormous bald head. The whole "body" is a cage of plastic and metal and blue-green retractable panels of hard "skin." See-through windows with flashing lights reveal the huge internal moving parts. She is ten times human size. We are the equivalent of a fetus or tumor in this labyrinthine figure. One hundred and twenty people can surround and view this supermodel at one time. To what degree can we identify and illuminate our own bodies with models of this scale and glitz? And what does it mean to lose our sense of human scale when exaggeration is as much a keystone of public attractions as it is of the grotesque? In Philadelphia at the Mutter Museum, the extremes of human skeletal form are displayed side-by-side in a circular case as curiosities with a circus sideshow feel.

Today we have sonograms and C-T scans, MRI’s and PET scans to view the internal body in real time, and which require informed visual reading, as, in fact, do figurative images in any context. Analysis is interpretation, as when a subject, a woman in labor, for example, becomes an object. In a contemporary delivery room, a woman in bed is typically wired to monitors, which continuously display her vital signs. Seated next to her, a nurse gently moves a mouse across her abdomen while diligently watching the screen to monitor the performance of the fetus. That is, if she has not been replaced by a virtual nurse as in some hospitals in Japan. What does it mean if a woman’s body processes are well attended, when she herself is ignored?


Our western historical tradition has focused on a physiological creature of flesh and blood, of skin, viscera and body fluids on an armature of bone, our embedded skeleton as primary structure. However with the arrival of the x-ray we could skip the knife and see through skin to bone to see a mysterious realm of tonal gradation. The rigorous training of radiologists in the strategies of visual reading often surpasses that of contemporary visual artists. In our era with advancing technologies of medical visualization, (computed tomography, magnetic resonance imaging and positron emission tomography) of photonics and bio-photonics, we are losing our physical selves. We are being reinterpreted through medical imaging at the forefront of body representation, dramatically demonstrated at annual conferences, such as "Medicine Meets Virtual Reality." (5) With the advances of remote, robotic surgery the eye-hand co-ordination of 8 to 12 year olds from playing video games is training them in the requisite skills of today’s and tomorrow’s new surgeons. Advanced medical schools are even considering robotic surgery as a specialty training program - for the Da Vinci Surgical System, for example- that would be separate from the standard four year medical school curriculum for medical doctors. Such specialist surgeons, operating from remote locations, even different countries, would not even have to meet the patient.

The contemporary Visible Human project is the result of a very costly, highly complex process, whereby a self-donated criminal cadaver has been micro-sliced and digitized and made available from the National Library of Medicine as a distribution base for an extensive range of independent programs for medical study. Medical schools and research labs have developed 3-D Virtual Reality Anatomy programs of the Visible Man and Visible Woman. Now we can exchange a physical self for a 3-D virtual reality display on a 2-D.screen, at a time, when for economic, rather than practical reasons, some medical schools are abandoning their established anatomical dissection programs for computer and real-time laboratory demonstration dissection. However, what is lost is the powerful hands-on sensory experience of the unpredictable, individual physical self. After all, no two bodies are alike, many with remarkable differences, which cause huddles in the anatomy lab.

We can now study the heart with goggles and magnetic finger tipped gloves. We can enter the rib cage, zip into the inferior vena cava, orbit the chambers and valves, and ride the looping Perkinge fibers, conveniently colored yellow. We can enlarge the image until it seems to emerge from the screen. It was illuminating to discover that, to develop this display at UCSD, advanced drawing skills were invaluable in visualizing and programming the quarter turns of body parts, as the available 3-D imaging programs were inadequate. The scale is variable and we can enlarge to room size in a total surround. That is, if we can afford the equipment to do it.

We now have the option of a cosmetically reconfigured self within our evolving social/cultural/medical and genetic age of cyborgs and avatars. With photonic and bio-photonic imaging we are represented as scans and graphs, as neon colored printouts of body hot spots, and as linear genetic arrays, in effect more virtual than physical. Even in death we have more options than burial or cremation. We can be cryogenically frozen or plasticized as the plasticized cadavers of Gunter von Hagens’s "Bodyworlds" and its offspring exhibits of "The Body."

Our challenge is to understand and respond to the implications and consequences of these advancing phenomena that culturally define us. It is because we are still here, in our skin, embodied and temporal, transforming physically over a lifetime, even as a reluctant public takes the adversarial position of refusing to accept that we are of nature,A that we age and die. I argue for the immediate and the visceral because I believe that the life we have is an evolutionary gift, and that, at whatever our stage of life, we, in ourselves, are a unique demonstration of that vital process. We are the perfection of ourselves.

Note: This commentary has been abbreviated from a paper presented at a 2009 College Art Association Conference Panel titled "Clothing, Flesh, Bone: Visual Culture Above and Below the Skin," Co-Chairs, Sarah Adams and Victoria Rovine.


1. Martin Kemp, "Medicine in View: Art and Visual Representation", Western Medicine: An Illustrated History, ed. Irvine Loudon (New York: Oxford University Press, 1997) p. 11.

2. Arthur C. Danto, The Body / Body Problem (Los Angeles: University of California Press, 2001) p. 14.

3. Walter Schubpach, The Paradox of Rembrandt’s 'Anatomy ofA Dr. Tulp’ (London: Wellcome Institute for the History of Medicine, 1982) p. 31.

4. Linda Nochlin, The Body in Pieces: The Fragment as a Metaphor of Modernity (New York: Thames and Hudson, 1995).

5. Medicine Meets Virtual Reality 17, NextMed: Design for/the Well Being. Medicine Meets Virtual Reality is an annual conference on emerging data-centered technologies for medical care and education. It includes The Well, which merges formal exhibits with casual demonstrations and The Salon, which mingles the visual arts, science, and medicine.A January 19 - 22, 2009. The Hyatt Regency Long Beach, Long Beach, California

The Mirror and Self-Knowledge

January 22, 2009 at 10:22 am

Using the internet for self-knolwedge

Commentary by David Biro, MD, PhD, Assistant Clinical Professor of Dermatology at SUNY Downstate Medical Center and author of One Hundred Days: My Unexpected Journey from Doctor to Patient. His new book, The Language of Pain, will be published by Norton in 2009.

Illness like any experience that deviates from the norm (in this case, the norm of health) triggers a search for meaning: something is wrong with me, I must find out what is happening. Since the source of illness lies within us, we instinctively turn to introspection: let's try to see what's happening. But immediately we encounter obstacles. There is the opaque surface of the body that literally prevents us from seeing inside. And more significantly an entire nervous system designed specifically to limit (thankfully) our engagement with the body and continually point us in the opposite direction. Even consciousness - that quintessentially inner and private realm - constantly reaches outwards towards the objects in the external world that we think about, desire, and fear.

While not explicitly offering illness as a case-in-point, many contemporary thinkers including Sartre, Foucault and Lacan have consistently undermined the traditional approach to self-knowledge by introspection. Instead, they emphasize the importance of the Other in understanding the self. We rely, for example, on other people like doctors, who, in turn, have studied other bodies (both dead and alive). We rely on things like books and the Internet which provide information about ourselves. And of course we rely on that ancient means of self-reflection, the mirror, which allows us see ourselves from perspectives otherwise unobtainable.

The Case of Frigyes Karinthy

Frigyes Karinthy was a well known Hungarian writer of the early 20th century who developed a brain tumor. The tumor, however, would not be diagnosed by one of the many specialists he consulted with but rather quite remarkably by himself, a layman who never went to medical school. Himself, that is, with the help of a metaphorical mirror.

The first sign of trouble came with the trains roaring in his head. Next the sense that pictures and tables were moving when they weren't. Then there were headaches and fainting fits. One doctor attributed the symptoms to an ear infection. Another to nicotine poisoning and a third to humiliations suffered in early childhood. In each case none of the prescribed interventions helped, and for a while Karinthy was determined to live with the trains and hallucinations, belittling their importance as his doctors did. But when they persisted and new symptoms developed, he could deny them no longer. They were interfering with every aspect of his life. Regardless of what the doctors thought, something was wrong. Very wrong.

Proof of his conviction would come unexpectedly. Karinthy was visiting the clinic where his wife, a doctor, worked at the time. Accompanying her on rounds, Karinthy stopped at the bed of a young man, transfixed by the expression on his face. It looked familiar, he thought. The man has a brain tumor, his wife grimly informed him, and is terminal. Ah, remembered Karinthy, he had seen that face before, in a friend who died many years ago of the same condition. But Karinthy wasn't entirely satisfied. He continued to be haunted by the sight. It reminded him of someone else too, he was sure.

Later on it hit him with the full force of the roaring trains in his head:

I had suddenly stopped dead in the gateway, like the ox I had seen unwilling to enterA the slaughter-house. At that moment, it had flashed into my mind. I remembered. The pale, vacant face of the dying man reminded me of my own expression as I had seen it lately in my mirror while shaving. I took two steps, then stopped again. With a foolish grimace, like a man who pretends to belittle some achievement he is boasting about, I said to my wife: "Aranka, I've got a tumor on the brain."(1)

Aranka dismissed her husband's epiphany as crazy. But she was soon proven wrong. Fortunately, things would turn out well for Karinthy. He was successfully operated on by the famous Swedish neurosurgeon Olivecrona. Afterwards, he returned to his writing career and publish his best work yet, a memoir of his fascinating encounter with illness, A Journey Round My Skull.

Doppelgangers in Pain

Karinthy is not unique in deriving insight about his illness from another person. Many patients instinctively gravitate toward other patients with similar diagnoses. How is illness playing out in them and what in turn might it mean for me? Indeed, this is a recurring theme in the increasingly popular genre of illness narrative or pathography. Whether they find fellow sufferers in the clinic or in support groups or on the Internet, patients are constantly on the lookout for what Alphonse Daudet, another writer-patient, once called his "doppelgangers in pain."

On the one hand, these significant others are an instant source of support and sympathy in a world that tends to alienate and isolate the sick. "My doppelganger," writes Daudet during his stay at a French sanatorium, "the fellow whose illness most closely resembles your own. How you love him, and how you make him tell you everything!" At the same time, they offer a vital means to self-knowledge. Towards the end of his life, Daudet could no longer walk steadily. The ataxia caused by syphilitic damage to his cerebellum resulted in a clumsy, halting gait. But the only way for him to see what he looked like was to observe himself in a mirror. Or better yet in another patient with the same problem:

I see him in my mind's eye, putting one foot down carefully before the other, but still tottery: as if walking on ice. Sad. (2)

No doubt Daudet feels sad for his doppelganger. But equally sad, perhaps more so, for himself and what has become of him.

Nor do sufferers restrict "finding" themselves in human beings that literally look like them. Grieving the loss of his lover who died of AIDS, Mark Doty finds solace and insight from a seal he spies in Cape Cod Bay during a walk. Apart from the group and alone, distressed and exhausted, the seal "conveys a kind of helplessness and desolation" that cuts Doty to the core. Not only because he feels sympathy for another sufferer but because he sees himself in the seal, the inside of his grief-stricken mind suddenly visible (3). Others find themselves in the fictional characters of books they read, in the cadences of songs they listen to, and in the sky that seems to mirror their emotions. All of which should be understood not as a passive "stumbling" upon the self but as an activity that requires a degree of imaginative or metaphorical work on our parts. We project ourselves onto things in the world - other people, seals, or songs -so we that could see and understand ourselves.

Mirror Neurons

As it turns out, the human brain may be hardwired to engage in projections of this sort. One of the most exciting, recent discoveries in science has been the mirror neuron. First isolated in monkeys and later found to exist in human beings, these neurons (and groups of neurons) are active not simply when we are moving and emoting but when we observe others moving and emoting. Our brains, as it were, re-enact or mirror the movements and emotions of other people as we watch them. Although scientists are still working out the implications of this extraordinary finding, it is almost certain that the brain's mirroring system contributes to the profoundly social nature of human beings and may well be responsible for many of our greatest collective achievements: language, social institutions, and culture (4).

Many scientists also believe that neuronal mirroring can reflect in two directions, illuminating both the external world (of others) and the internal world (of self). By constantly observing and imitating others, we not only learn about them but about ourselves: How we see and think of ourselves; the meanings we ultimately give to our most intimate and "unsharable" experiences like pain; indeed the ongoing project of human creation in general as it works to fill the world with things that possess the capacity to reflect our humanity (5).

Thinkers like Sartre, Foucault and Lacan may have been exquisitely prescient. Mimesis may well turn out to be a prerequisite or stepping stone to self-knowledge. We observe, reproduce, impose patterns, and thereby understand. We can do this with objects that happen to cross our field of vision like the patient encountered by Friges Karinthy or the seal by Mark Doty. But we could also do this on a more sophisticated level. If a potential doppelganger doesn't exist we can invent one. As Alphonse Daudet does in his dream of the boat with the damaged keel (mirroring his diseased keel-spine). And as many artists do in their poems and paintings. After finishing his masterwork, Flaubert is famously reported to have said of his creation: Emma Bovary, ces't moi. The re-production leads to recognition. The same thing that painters do perhaps more self-consciously in their self-portraits and in the case of Frida Kahlo, her double self-portraits. Here the dictum of philosopher Nelson Goodman is most transparently realized: Comprehension and creation go on together (6).


(1)Friges Karinthy, A Journey Round My Skull (London: Faber and Faber, 1938), p.59
(2)Alphonse Daudet, In the Land of Pain (New York: Knopf, 2002), p.56-7.
(3)Mark Doty, Heaven's Coast (New York, HarperCollins, 1996)
(4)Marco Iacobini, Mirroring People: The New Science of How We Connect with Others (New York: Farrar, Strauss and Giroux, 2008)
(5)Elaine Scarry, The Body in Pain (New York: Oxford, 1985)
(6)Nelson Goodman, Ways of Worldmaking (Indianapolis: Hackett Publishing, 1978)