Literature, Arts and Medicine Blog

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

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).

Critique

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.

References
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).

Commentary by Caroline Wellbery, M.D., Associate Professor of Family Medicine, Georgetown University Medical Center; Associate Deputy Editor, American Family Physician

Medical uncertainty is all around us

AIn medicine we are quite often confronted with 'not knowing,’ with 'choices,’A with 'multifactorial etiologies,’ and 'inconclusiveness,’ to name just a few of the states to whichA we can apply the term 'medical uncertainty.’A Although nothing new, the idea of medical uncertainty might recently have become more fashionable as clinicians have begun to ponder the limits of evidence-based medicine. As appealing as it is to have incontrovertible scientific backing for our actions in treating our patients, we often simply don’t know what to do.

A search in Pub Med using the term medical uncertainty yields several thousand articles. Of those that might be relevant to this essay, the articles range from philosophical speculations to the calibration of laboratory standards. There are articles about prognosis, about patient ambivalence, about the interpretation of guidelines and the changing scientific base of clinical practice. In other words, medical uncertainty is pervasive, perhaps astonishingly so, considering that most of us who practice medicine proceed confidently in our daily decisions and interactions. I recently asked a colleague who sees patients on a regular basis whether she ever feels uncertain as a clinician. "Sure," she said-confidently, I might add-"But a lot less nowadays than I used to."

I would submit that in daily medical practice, there is a constant measure of low-level uncertainty. This uncertainty can increase when the stakes are higher-a patient is seriously ill-or when the psychological and social context of the situation potentiates the uncertainty. In such cases, clinicians will usually seek validation or consensus from colleagues, or even from formal organizations such as ethics committees.

None of this, though, addresses the question of what, if anything, we can learn from medical uncertainty, or whether, God help us, there is any value to it. On the surface, we live by the contrary: we assume that medical uncertainty is an obstacle that prevents us from providing the best medical care. If the US Preventive Services Task Force states that evidence is 'insufficient,’ for example, in determining whether to do prostate cancer screening or not, this leave the practitioner with 'no answer,’ a situation that can be personally frustrating and legally dangerous.

But one thing I have noticed is that as long as medicine is a job, there is a tendency to focus on doing, whereas when medicine is a calling, the focus also incorporates being. So while medical uncertainty gets in the way of doing, I would argue that it actually has some utility in fostering that aspect of medicine that involves being. The reason for this, as I shall explain, is that uncertainty in medicine allows for a philosophical reframing of clinical intervention when conventional 'doing’ has little to offer. But in order to understand what exactly medical uncertainty has to offer us, we must first acknowledge that some sorts of persons have a higher tolerance for uncertainty than others.

Uncertainty and temperament

One of my favorite poems is David Gewanter’s "My father’s autopsy," because it captures so much of what, in medicine, is science, and what of it is art. The father of the poem’s title is a pathologist. When his son turns 13, the father decides that he is of an age to accompany his father to the morgue to witness an autopsy. It’s an initiation rite that invokes Jewish tradition, associating the thirteenth birthday with the advent of manhood and, by extrapolation, with the knowledge of death. But father and son have wholly different views of the world. The father sees a corpse; the son wonders about her sexuality. The father saws open the body; the son sees a jumble of metaphors. The father pulls out a pebble from the dead body, presumably the cause of death and, satisfied with the explanation it offers, replaces it. The son, though, is horrified at the disturbance of the body’s integrity. He wishes she had never said 'ahh for a doctor.’ He implies that you cannot put back a pebble as though nothing had changed.

In short, the father delights in the objective findings of the dissection, in capturing the anatomical cause of death. The son in turn thinks only of subjectivity-his own, his father’s, and the dead woman’s. He is not interested in reducing the death to a cause. He is interested in the complexity of the subject and indeed, turns his attention to his father, with whom he has a complicated relationship. His 'autopsy’ of his father yields anything but a pebble. It yields an opaque human being, as 'inward as a microscope’. The father remains elusive to the son’s tools of dissection.

What we have in this poem are essentially two types of people. The father devotes himself to clarity and objectivity. He hates mess. The son revels in uncertainty and ambiguity. The wholeness, impenetrability and multiplicity of the body are the stuff of poetry. What does this say about medical uncertainty? It suggests that much of medical uncertainty has to do with the practitioner him- or herself.A There are those who lose themselves in the objective findings and require concrete and coherent answers. Then there are others for whom the essence of inquiry relates to the dense, opaque and mysterious qualities of subjectivity. These are two realities, and I believe that physicians align themselves with one or the other, with the one important difference that unlike the poet narrating the poem, the metaphorically inclined doctor cannot discount objective reality.A But objective action and findings for the 'poetic’ physician are not what he or she finds most compelling in medicine.

Comfort with uncertainty drives specialty choice

A story, "The Save," recently published in Pulse, Voices from the Heart of Medicine tells this story.AThe surgeons devote themselves to reattaching a limb that the patient has deliberately sawed off. They ignore the psychiatric disorder that led to this self-mutilation and then are shocked when the patient tears off the repaired limb after surgery. The narrator, on the other hand, decides at that moment that he is more suited to become a physician of the 'whole’ person than a surgeon. It is perhaps telling that the narrator speaks of the 'whole’ person in the setting of this self-mutilating dismemberment. The 'whole’ presumably refers to the many factors and influences that led to the patient’s inner torment, but also echoes Gewanter’s interpretation of 'wholeness’ as something that is ultimately inaccessible, if not imponderable.

Wholeness, then, and uncertainty bear a degree of kinship, because the objectively focused physician can usually find some part of the whole that can be addressed with certainty, even when the problem of the 'whole’ remains uncertain. As a simple example, a cancerous bowel can be surgically excised, but the impact on the patient and his prognosis remain uncertain. Thus, I think it is safe to say that some practitioners are at home with uncertainty, whereas other require definitive answers, and that these differences in temperament dictate choice of specialty.

Uncertainty invites [other] answers

This leads me to an important corollary insight: if some practitioners by temperament gravitate towards medical certainty, and others gravitate towards uncertainty, then patients whose problems have certain outcomes will best be served by the former and patients whose health is rooted in ambiguity will benefit from care by a holistically oriented practitioner. The latter patient, as I try to tell medical students, is by far the most common. I see their disappointed faces as they begin to suspect-but quickly dismiss-the probability that most of what doctors do is help patients navigate ambivalence, complexity and the unknowns of their illness. This state of affairs is not as dire as they imagine. These practitioners do not lose competence or confidence in the setting of uncertainty. Rather, they ride the uncertainty as a necessary part of care, even of life, and at times, experience their richest moments in pondering its mysteries. This brings me then, to the question of whether uncertainty is necessary, or even desirable.

That the speaker’s answer to this question in David Gewanter’s poem is in the affirmative is clear from the title.A "My father’s autopsy" revels in the ambiguity of meaning: is the father dissecting a corpse (in fact that is what the poem goes on to show) or is it the father who is undergoing the autopsy (it turns out that this, too, is true, albeit metaphorically). While in medicine we cannot do without the objective treatment or cure, the absence of the interpersonal layer often leaves the patient bereft of hope or meaning. The very essence of uncertainty is 'both and.’ By acknowledging that uncertainty is an inevitable part of clinical care, the poetic, 'both/and’ type of practitioner can reframe the patient’s priorities, moving the patient away from the need for certainty to an understanding of what, in the larger scheme of things, is important.

No poem expresses this reframing so well as Veneta Masson’s "Reference Range." In this poem, the practitioner discusses lab results with a patient. Already early on, the significance of the lab results are called into question:

Your tests show

the numbers 73, 90, 119 and 2.5,

the letter A,

the color yellow,

a straight line interrupted by a repeating pattern

of steeples and languid waves

The patient balks at the explanation. The patient wants to know what the lab results mean. Are they normal, he asks. Again the clinician responds by emphasizing the numerical uncertainties. This time, she goes on to reorient the patient. We can’t know what these numbers mean, exactly, she appears to explain. But maybe their exact meaning, in the context of this visit, or this illness, aren’t all that important. Maybe the focus should be on what really is important, a focus that eludes objective medical attention. Laced throughout the poem are hints at this sort of elusive focus: the color yellow, a squiggly line. The poet concludes by saying:

Normal’s a shell game you seldom win.

Take my advice. Enjoy good health

not as your due but the blessing it is

like Spring, laughter,

death.

Conclusion

Medical uncertainty indeed takes many different forms in clinical practice, and is almost an integral part of its vocabulary. Whether they are aware of it or not, practitioners deal with uncertainty every day, and it becomes a problem mostly in serious and complex situations which require consultation with others. That being said, some practitioners are, by temperament, more comfortable with uncertainty than others, and these individuals, like the provider in Veneta Masson’s poem, can turn medical uncertainty to their advantage by redirecting patients’ priorities. So is medical uncertainty a necessity? Certainly to some technicians and specialists, it is a necessary evil. But to others, particularly in the patient-oriented specialties, medical uncertainty is also an opportunity.

We are taking a break from our regular essay commentaries until September.A In the meantime, there will be occasional short postings, mostly by me (Felice Aull). This image of the plant, Traveller’s Joy, invokes this summer interlude — the pleasure of enjoying gardens, parks, nature (at least in the northern hemisphere) and of vacation traveling, but also the possibilities for intellectual travel, creative travel, and other explorations beyond familiar borders. Here are some thoughts to begin with.

We learned today that author, Frank McCourt, died on Sunday, July 19.A His memoir (creative nonfiction?), Angela’s Ashes, is one of the most compelling, absorbing, and entertaining books that I have ever read (and I read a lot). I was moved to annotate it for the Literature, Arts, and Medicine Database as soon as I finished reading it in 1996, and before it won The Pulitzer Prize and the National Book Critics Circle Award. In addition to being well-crafted and devastatingly sad, it was witty-a rare combination. But the book and its author pulled me into their orbit for additional reasons.

McCourt had taught for years at Stuyvesant High School, an intellectual rival of my own alma mater, the Bronx High School of Science, and located just a few blocks from where I live — until it moved to its present location near Battery Park City. Not only that, but somehow I found out that Frank McCourt LIVED a couple of blocks away from me, in a nondescript apartment building. I wanted to contact him to invite him to be a speaker in the Literature, Arts, and Medicine Speaker Series sponsored by NYU School of Medicine, where I taught and organized the series. He could speak, I thought, about deprivation and resilience, humor and illness, writing and the self, the human condition. Among the medical students and faculty he would be addressing were many who had graduated from Stuyvesant High School, and some who even remembered him as their teacher.

I don’t remember how-probably just by searching the phone book-but I found his telephone number. When I called, a pleasant woman answered the phone and said she would give him my message. I waited several weeks without hearing from him and phoned again. This time, there was an answering machine that gave out very little information. Apparently, the book had taken hold, publicity was churning out, and his life was no longer confined to East 18th St. His gain, and our loss. I never read the books he wrote after Angela’s Ashes — I didn’t want to spoil the pleasure that book had given me.

Commentary by Mary Spano, Medical Photographer, The Institute of Reconstructive Plastic Surgery, NYU Langone Medical Center. Spano's work is on exhibit from June 29-August 31 in the Smilow Gallery at NYU School of Medicine. Free and open to the public.

In October of 2006 I joined the team at the Institute of Reconstructive Plastic Surgery at NYU Langone Medical Center, as its medical photographer. At the time, I was a professional photographer with a 20-year commercial background. In addition, I had worked as a Radiologic Technologist over the years to keep my photography career going, but I wasn't sure what medical photography was. I soon found out that I had gotten my "dream job." It combined everything that I loved about photography and knew about medical imaging. My job is to photograph people with facial differences, mostly children, and to provide diagnostic images for our doctors to plan surgeries that change those children's lives.

In the beginning I photographed pre and post surgical protocols. Many of our patients are young and vulnerable; they are apprehensive about everything "clinical." I began building my studio as a child friendly environment. I brought in child-sized posing chairs, dancing toys, and bubble machines - anything that would make the children comfortable enough to obtain the diagnostic photographs that the surgeons needed to plan their surgery.

Then one day around Christmas 2008, I was photographing a small child who was particularly apprehensive about letting go of Daddy's hand and I asked him if he wanted Daddy and Mommy in the photo with him. He said yes, and the "Family Portrait Project" was born. I took that first portrait not knowing what it would mean to the families or our department. Here, our families can sit for a portrait in a private setting, without any inhibition. Many of our families might not otherwise have a family portrait. These portraits are now displayed at the Institute in the gallery in our conference room.

The portraits have become the face of the Institute. They also help the staff illustrate to new families that whatever they may face along their path, they have the support of everyone at the Institute as well as the families we treated before them.
Working at the Institute is the most humbling and rewarding experience that I have ever had. I enjoy every day, and look forward to continuing to illustrate the incredible work the Institute does to transform the lives of children with facial differences.

While we are working on the next blog commentary, check out a Lancet article by Jane Macnaughton, "The Dangerous Practice of Empathy," a perspective on the art of medicine. Macnaughton argues that "true empathy derives from an experience of intersubjectivity and this cannot be achieved in the doctor-patient relationship." "It is potentially dangerous and certainly unrealistic to suggest that we can really feel what someone else is feeling. It is dangerous because outside the literary context, where we are allowed direct experience of what a fictional patient is feeling, we cannot gain direct access to what is going on in our patient’s head."

My take is that literature (and art and film), by giving access to fictional lives, prepares the mind for analogous situations and lives, so that one can imagine, however imperfectly, experiences to which one has no direct access and contemplate their significance.

Another online commentary of interest is posted at The University of Connecticut’s Advance Archive: "Prenatal testing for Down Syndrome raises ethical concerns", by Chris DeFrancesco. The commentary refers to a paper published by Peter Benn and Audrey Chapman in JAMA, May 27. They raise concerns about the potential consequences of noninvasive prenatal diagnosis, with regard to termination of pregnancy. Of course, it’s always important to read the original article, "Practical and Ethical Considerations of Noninvasive Prenatal Diagnosis", which I quote from here: " . . . noninvasive diagnosis might result in a substantially reduced prevalence [of Down Syndrome] and in the process subtly alter attitudes about the acceptability of continuing an affected pregnancy. Doing so could diminish understanding and support for affected individuals and their families and increase the stigma associated with having a genetic disorder. Moreover, noninvasive prenatal diagnostic testing for Down syndrome would be a first step toward screening for other genetic disorders and birth defects and potentially for physical and mental traits."

I call your attention also to our Regional Events section of this blog — there are many events of interest relevant to medical humanities that are posted here.

Felice Aull

Commentary by Felice Aull, Ph.D., M.A.; Adjunct Associate Curator, New York University School of Medicine; Editor in Chief, Literature, Arts, and Medicine Database

In a recent op-ed piece in the New York Times ("Dead Body of Knowledge") Christine Montross made a plea to continue the long tradition of cadaver dissection in medical education.A Montross, a physician and author of the thoughtful book, Body of Work: Meditations on Mortality from the Human Anatomy Lab, argues that anatomy courses based on human dissection offer "a safe and . . . gradual initiation into the emotional strain that doctoring demands." She is concerned that recent trends to incorporate advanced imaging techniques into the anatomy lab may even replace dissection completely and believes that medical students will miss out on the emotional conditioning that human dissection provides. A few days later the New York Times published six letters to the editor responding to Montross’s essay — all of them written by medical professionals or medical students. Five of the six letter writers supported Montross’s position, but a Stanford University professor disagreed, stating that "teaching anatomy cannot be couched in an either or framework; instead, technology and cadavers should enhance each other." I agree with the Stanford professor and here argue that dissection of a preserved cadaver, while it has much to offer for medical education, is not a teaching tool to help physicians and other health professionals "cope" with the emotional demands of working with sick and dying human beings. It has, to the contrary, been noted that the inevitable objectification of the body that takes place as the cadaver is dissected during months of anatomy teaching, marks the beginning of the developing physician’s professional detachment — a detachment that needs to be unlearned and guarded against so that it does not interfere with appropriate care for patients.

Writes one student during her anatomy course, "I can see how easy it is for health professionals to focus on the body and not on the person" (p. 38, Anatomy of Anatomy in Images and Words, by Meryl Levin). And another writes, "I suppose I have become comfortable, or at least reconciled to the reality of the next 10 weeks. I don’t like that. I don’t like that I have stopped truly thinking about the experience, because there is still a lot to think about. These cadavers did once live, breathe, eat, and sleep before they so graciously donated their bodies to medicine" (p. 58, Anatomy of Anatomy). These thoughtful comments were written by anatomy students who volunteered to participate in a project that photojournalist Meryl Levin initiated several years ago, culminating in her book, Anatomy of Anatomy in Images and Words. The students wrote journal entries during their anatomy course, which forced them to reflect on their experience. Most medical students do not participate in such ongoing reflective exercises while they take gross anatomy, or even after they complete the course. Even the memorial services that are often held at the end of anatomy classes do not address the problem of professional detachment and certainly do not address questions of how to interact with dying patients and their families. Following such a memorial service, one student noted that "I found it hard to become very emotional about these prosections, these bodies, these individuals, these first patients of mine. Maybe I am on my way to acquiring some of the tools I will need to become a physician — a scary thought though, because that is not the kind of physician that I would like to become. . . . must we have a memorial service each time we encounter death in some form or another? It worries me a little that we (or I) needed the service to step back for this all-important reflection, something so many of us could not or would not have done on our own, individually. Hopefully dealing with death will be different — not easier, just different — the next time around" (p. 124, Anatomy of Anatomy).

There are, it is true, some medical schools that nowadays recognize the problem of professional detachment and its early beginnings in the experience of intensive cadaver dissection in the gross anatomy lab. Most notable among them is the University of Massachusetts Medical School, which, under the guidance of anatomy instructors and thanatologist, Sandra Bertman, work with students to help them recognize and articulate (verbally and in drawings) their own fear of sickness and death and other implications of working on the dead-see annotations of Facing Death: Images, Insights and Interventions, and One Breath Apart: Facing Dissection, Bertman’s books detailing this approach.

But what will dealing with death be like when it happens to a person the physician has been treating? The artificially preserved cadaver of the anatomy lab cannot be equated with the complex physiologic and emotional processes of becoming sick and of dying, and its dissection cannot be equated to working with suffering or dying patients and those who love them. The cadaver is a static entity, a representation of what once was, not a process that the student has witnessed as it was unfolding. Newer imaging techniques at least allow observation of some body processes, even if they do not provide the emotional substrate for that body and its interactions with others. Although students may project their fears onto the cadaver, the cadaver cannot help them to negotiate the needs of unpredictable and changeable human beings-human beings who, as physicians, they will come to know, however fleetingly. That negotiation can only be learned about and confronted by working with the living and continually reflecting on that work. Generations of medical students have, after all, learned anatomy from cadaver dissection, but physicians have been criticized for failing to engage with dying patients and their families. It is the incorporation of a medical humanities perspective into all phases of medical education, not cadaver dissection per se, that attempts to address such problems.

References
Bertman, Sandra L. One Breath Apart: Facing Dissection (Newton, Mass: Ward Street Studio) 2007

Bertman, Sandra L. Facing Death: Images, Insights, and Interventions (Washington, Philadelphia, London: Hemisphere) 1991

Levin, Meryl. Anatomy of Anatomy in Images and Words (Third Rail Press

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:

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:

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).

References

(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)

Commentary by Felice Aull, Ph.D., M.A., Founding editor, Literature, Arts, and Medicine Database and editor, this blog.

It seems these next few days require a blog entry that digresses from our usual sequence of invited essays. The moment is of course historic. The moment is exhilarating. The moment is sobering.

In an earlier commentary, written just before Barack Obama was nominated to be the Democratic candidate for president of the United States, I invoked his candidacy and family background to draw attention to the fallacy of race as a biologic concept, and to problematize ongoing efforts toward race-based medicine. Now I invoke the onset of Obama’s presidency not only to celebrate his achievement and the barriers that have been broken, but also because he is an author, an educator, a thinker who does not see the world in Manichaean terms, and who counts among his friends a poet’s poet -Elizabeth Alexander, the scholar he asked to write an inauguration poem. I think I can even relate this moment to medical humanities!

I am now reading Obama’s autobiography, Dreams from My Father, published in 1995. I’m only up to chapter 5, but it is clear that this man, long before he sought the presidency, was self-reflective and could articulate the complexity of his personal feelings as well the complexity of the social dilemmas he was forced to confront. Aren’t these insights and skills what we in medical humanities are trying to encourage? How refreshing to have such a person heading our government.

How refreshing, also, that the President-elect chose a contemporary who is an award-winning poet, a scholar in African American and American studies (who will chair the department of African-American studies at Yale University later this year), and who has been honored by Yale for her teaching abilities. Here are the last few lines of one of her poems:

Poetry (and now my voice is rising)

is not all love, love, love,
and I’m sorry the dog died.

Poetry (here I hear myself loudest)
is the human voice,

and are we not of interest to each other?

from Ars Poetica #100: I Believe
In American Sublime

Are we not of interest to each other? Such also is the work of medical humanities-to be interested in, listen to, and hear the other.

Commentary by Felice Aull, Ph.D., M.A.; Adjunct Associate Curator, New York University School of Medicine; Editor in Chief, Literature, Arts, and Medicine Database

Now that I’m semi-retired, an elective course that I developed and taught for fourth-year medical students is retiring with me. I'm writing about it here, in the hope that other medical humanities educators might wish to adapt it for their teaching — it was very well received by participating students and, I think, served a useful function. (I believe Linda Raphael has introduced a version at George Washington University School of Medicine). I taught "Betwixt and Between: Borderlands and Medicine," for seven consecutive years at NYU School of Medicine, modifying it somewhat each year. The idea of adapting a borderlands theme to an examination of the medical profession came to me while studying the work of Edward Said and Gloria Anzaldua as I was working toward a master’s degree in humanities and social thought (35 years after getting a Ph.D. in medical science). Below I summarize my motivation for developing the four-week course and elaborate on the syllabus. References annotated in the Literature, Arts, and Medicine Database are linked. Full reading references are listed alphabetically.

Representation, the arbitrary, ambiguity

In his groundbreaking book, Orientalism, Said argues that European discourse constructed a stereotyped Arab identity-the Arab as Other-that was ideologically biased, "regularized," hegemonic, and that enabled the Western imperial project.A Said noted that boundaries are to a great extent arbitrary. Later, Said wrote more generically of stereotyping and subordinating representational practices that must be resisted; he recommended that we should think critically by positioning ourselves "contrapuntally" — from dual perspectives - imagining ourselves as geographic boundary crossers or exiles. Said noted that boundaries are to a great extent arbitrary. It struck me that these themes applied to certain aspects of the institution of medicine and patient-physician interaction, and Bradley Lewis and I co-authored a paper that discussed these analogies (Medical Intellectuals: Resisting Medical Orientalism. Journal of Medical Humanities, Vol. 25, No. 2 / June, 2004, pp. 87-108). We argued that like Orientalism, medical discourse is the cumulative effect of selecting and reconstructing "the patient" and "disease" through the lens of the medical expert. Like Orientalism, medical discourse essentializes and reduces the patient, making empathic communication between physicians and patients difficult. We described how, in contrast to "medical orientalism," several physician writers cross personal and professional boundaries and think contrapuntally in their writing and interaction with patients.

I hoped that a contrapuntal approach to considerations of medical practice and the representation of individuals as "patients" might stimulate medical students to think "outside the box" about the institution of medicine, their future professional roles and interactions. Gloria Anzaldua’s provocative book, Borderlands/La Frontera, provided an additional perspective on borderlands that intrigued me in its applicability to medical education and practice, namely, that borders are often areas of dispute, ambiguity, cultural mixing, and even danger. Students could consider borderland areas of ambiguity in medical practices and training- an exposure that is often missing in their education. Fourth year medical students, being on the border of official designation as doctors, and having a perspective on their medical school experiences, seemed particularly suited to such an approach.

Features of the elective:

• Scheduled as a "full-time" month-long course in February, with no simultaneous clinical rotations or other electives permitted.
• Meets for 2.5 hours each of three mornings per week, for four weeks. Extensive readings, and study of online art and other web materials between sessions fill out the students’ time.
• Two short papers or creative work that responds to the course subject matter
• View and discuss a film on the last day of class

Week 1 topics:
How does the transition from student to professional (professionalization) occur: objectification of the body, responsibility vs. inexperience, instruction in "professionalism" vs. the hidden curriculum

Interaction between professional and personal life

Week 2 topics:
Perspectives on personal-professional and patient-physician boundaries
Narrative and empathy

Week 3 topics:
What is "normal": defining disease; social construction of disability; race and race-based medicine
Difference, rejection, Otherness
Medical uncertainty

Week 4 topics:
Illness as exile
Socioeconomic marginalization and illness

Week 1 : student/professional, personal/professional

Session 1. Introductory session uses poetry and art to introduce topics of cultural ambiguity ("Day of the Refugios" by Alberto Rios, "Original Sin" by Sandra Cisneros), borders between physician and patient ("Talking to the Family" by John Stone, "Open You Up" by Richard Berlin) distancing of the sick from their own health ("Across the Border" by Karen Fiser), isolation (Edvard Munch’s paintings Death in the Sickroom, The Dead Mother).

Arbitrariness of borders, the Other: one-page excerpt from Edward Said’s Orientalism.

Session 2. Objectification of the body as students become acculturated while learning gross anatomy through dissection. Anatomy of Anatomy in Images and Words by photojournalist Meryl Levin traces this process with photographs and student journal entries. Secret knowledge not previously available to the lay public. But now this knowledge is public: Gunther von Hagens’s Body Worlds exhibit.

Student response to gross anatomy course: poem, "Apparition" by Gregg Chesney. Intern trains herself to be detached: poem, "Internship in Seattle" by Emily R. Transue.

Historical perspectives on objectifying and learning from the body:

the dead body — Rembrandt’s painting, The Anatomy Lecture of Dr. Nicolaes Tulp)

the living body-Eakins’s paintings, The Gross Clinic and The Agnew Clinic

development of technology ("Technology and Disease: The Stethoscope and Physical Diagnosis" by Jacalyn Duffin)

Compare representations (paintings) of physician-patient interaction: The Doctor by Sir Luke Fildes and Picasso’s Science and Charity.

Patient’s perspective of objectification and loss of personhood: poem, "The Coliseum" by Jim Ferris

"Professionalism": Jack Coulehan critiques current curricula in medical professionalism and discusses the hidden curriculum. "You Say Self Interest, I Say Altruism."

Difficult transition and ambiguous boundaries when medical student officially becomes an MD. Playing the role, assuming the role. Short story by Mikhail Bulgakov, "The Steel Windpipe"and Perri Klass’s introduction to Baby Doctor and essay from Baby Doctor, "Flip-flops." Klass’s essays include reflections on the interaction of personal and professional life and lead into Session 3.

Session 3. Physician perspectives on the overlap and conflict of personal and professional life; subjectivity, objectivity

Poem, "Falling Through" by Michael Jacobs.
Essay, "Language Barrier". Elspeth Cameron Ritchie.
Essay, "Heart Rhythms". Sandeep Jauhar.
Story, "Laundry". Susan Onthank Mates.
Poem, "Monday". Marc J. Straus.
Poem sequence, "The Distant Moon, I, II,III, IV". Rafael Campo.
Essay, "Fat Lady". Irvin D.Yalom

Week 2: personal/professional and patient/physician

Session 1. Discussion of The Tennis Partner by physician-author Abraham Verghese. A memoir of the author’s personal relationship with a medical student whom he is teaching. It is also a reflection on cultural marginalization and physician vulnerability.

Power relations and physical examination:
Poem, "Physical Exam". David Watts
Essay, "Naked". Atul Gawande
Story, "The Use of Force". William Carlos Williams

Session 2. Narrative and empathy

Rita Charon and Jody Halpern’s theoretical arguments that narrative competence and empathy are necessary skills for proper patient care.

Rita Charon. "The Patient, the Body, and the Self", chapter 5 in Narrative Medicine.
Jodi Halpern. "A Model of Clinical Empathy as Emotional Reasoning" (pp.85-94) and
"Cultivating Empathy in Medical Practice" (129-138) in From Detached Concern to Empathy.

Empathy versus sympathy: poem, "Save the Word". Thom Gunn

Physicians write empathy (crossing boundaries):
Poem, "I’m Gonna Slap Those Doctors". Jack Coulehan
Poem, "Red Polka Dot-Dress". Marc Straus
Essay, "Sleeping with the Fishes". Kate Scannell
Essay, "Learning to Care for Patients, in Truest Sense". Abigail Zuger

Session 3. Patient perspectives on empathy

[first paper due]

Memoir excerpt, "The Patient Examines the Doctor". Anatole Broyard. Broyard’s brilliant commentary argues for emotional engagement, however brief, as beneficial to both doctor and patient — written before the current discourse on narrative and empathy.

Story, "People Like That Are the Only People Here: Cannonical Babbling in Peed Onk." Lorrie Moore. Highlights the divide between medical policies and practices, and suffering patients and their families.

Essay, "Search for wholeness: the adventures of a doctor-patient." Tamara Dale Ball. Dual perspectives from a medical student who has diabetes.

Week 3: health/illness

Session1. Medical uncertainty
From physician perspective: Atull Gawande (essay). "The Case of The Red Leg."
Poem, "Gaudeamus Igitur". John Stone
from patient perspective:"What We Don’t Know" (essay). Gail R. Henningsen.
Poem, "Routine Mammogram". Linda Pastan

Problematizing normality

Essay, "The Meaning of Normal." Philip Davis and John Bradley.
Article, "Defining Disease in the Genomics Era". L.F.K. Temple, R.S McLeod,S. Gallinger, J.G. Wright
Essay, "What’s Making Us Sick Is an Epidemic of Diagnoses". H. Gilbert Welch, Lisa Schwartz, and Steven Woloshin. New York Times, Science Times, January 2, 2007.
Poem, "Much madness is divinest sense". Emily Dickinson. (No. 435)
Poem, "Monet Refuses the Operation". Lisel Mueller

Problematizing concept of race and race-based medicine

"How Culture and Science Make Race 'Genetic’: Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous" Celeste Condit.

Session 2. Social construction of disability
The Rejected Body: Feminist Philosophical Reflections on Disability. Susan Wendell.
Section from the Introduction: pp. 1-5.
Chapter 2. The Social Construction of Disability.

Poem, "The Magic Wand" by Lynn Manning.

Look at brief video ad online: What if the world had been designed exclusively for people with particular disabilities/impairments?

Turning the Disability Tide: The Importance of Definitions. JAMA, Jan 23, 2008. V.299, NO. 3, pp. 332-334. Lisa Iezzoni, MD and Vicki A. Freedman, Ph.D. (Iezzoni is a disabled MD on Harvard faculty)
"Medical Care Often Inaccessible to Disabled Patients." National Public Radio
"Blocked", by Lisa Iezzoni. Health Affairs, 27/1, 203-209 (Narrative Matters), 2008)

Session 3. Difference, rejection, "Otherness"
Susan Wendell. The Rejected Body, Chapter 3. "Disability as Difference."
Also, pp. 60-69 on Otherness
Optional: Chapter 4. "The Flight from the Rejected Body."

Artists represent physical difference
Matuschka Archive
Alice Neel self-portrait
Sculpture of a pregnant artist who lacks fully formed limbs: Alison Lappert Pregnant (by Marc Quinn)
Artist Laura Ferguson investigates and aestheticizes her own body, deformed by severe scoliosis.

Meaning and discussion of "neurodiversity"
Introduction to Songs of the Guerrilla Nation: My Journey through Autism, memoir by Dawn Prince- Hughes

Week 4: exile, illness, marginalization

Session 1: Exile and illness
Said, Edward W. "Reflections on Exile." Said’s classic essay on characteristics of exile and what can be learned from the exile condition.

Robert Pope. Illness and Healing: Images of Cancer. Artist Robert Pope chronicles the experience of cancer treatment, based on his own treatment for Hodgkin’s disease.

Poem, "Surgical Ward" by W. H. Auden. Inability of those who are well to imagine and identify with those who are ill or injured.
Poem, "Emigration" by Tony Hoagland. Illness as loss of country, a journey with no end in sight.

Online Frida Kahlo art that depicts her dual selves; her loneliness, isolation, stoicism, and resistance:
Self Portrait Between the Borderline of Mexico and the United States
Henry Ford Hospital
The Broken Column
Tree of Hope
Frida and the Miscarriage
Essay, "On Being a Cripple". Nancy Mairs. Incisive well-written essay about language, perception, attitudes surrounding disability-based on her early years with multiple sclerosis.

Essay, "Liv Ullman in Spring". Andre Dubus. Severely and permanently disabled in an automobile accident, Dubus gives a detailed and poetic account of his fears, loneliness, and the human connection provided by an empathetic listener.

Session 2. Marginalization
Story, "From the Journal of a Leper". John Updike. A sculptor who has psoriasis is obsessed with his physical appearance. As his condition responds to treatment, his art and relationships deteriorate.

Essay by Rafael Campo. "It Rhymes with ‘Answer’ ". Campo details how social and cultural marginalization became imprinted on his physical self.

Watch online video showing internalization of racism (3:25 - 5min): "A Girl Like Me."

Memoir by Jimmy Santiago Baca. Prologue, and chapter 8 from A Place to Stand: The Making of a Poet. Baca chronicles his alienation and despair, conditioned by a family history of social and racial marginalization, and how in prison he eventually was able to develop a sense of self-worth through self-education, cultural pride, and writing poetry.

Lee, Don. "About Gary Soto." Background of poet Gary Soto’s early life in a poor working-class Mexican American community. Cultural loss and marginalization.
"The Levee." Gary Soto.
"Hand Washing". Gary Soto.

Story, "newborn thrown in trash and dies." John Edgar Wideman. Inevitability of a premature death.

Poem, "How to Write the Great American Indian Novel". Sherman Alexie. A clever satiric poem about how whites co-opted Indian culture, resulting in the metaphoric and actual disappearance of a people.

Susan Power. Short story, "First Fruits." Using actual history of the first Indian who was educated at Harvard University, this imaginative story by an author of American Indian heritage brings American Indian culture and contemporary American majority culture into harmony and preserves the cultural identity of the Indian protagonist.

Session 3. Film

[second paper due]

I’ve used several films over the years, most recently, The Station Agent.

Bibliography

Alexie, Sherman. "How to Write the Great American Indian Novel". In Native American Songs and Poems (NY: Dover) 1996, pp. 28-29.
Anzaldua, Gloria. Borderlands/La Frontera (San Francisco: Aunt Lute Books) 1987
Auden, W. H.."Surgical Ward". In The Collected Poems of W. H. Auden (Kingsport, TN: Random House, 1945)
Baca. Jimmy Santiago. A Place to Stand: The Making of a Poet (New York: Grove Press) 2001.
Ball, Tamara Dale. "Search for wholeness: the adventures of a doctor-patient." The Pharos. 54 (1): 28-31 (Winter, 1991).
Berlin, Richard. "Open You Up" by. In How JFK Killed My Father (Long Beach: Pearl Editions) 2004, p. 10
Broyard, Anatole. "The Patient Examines the Doctor". In Intoxicated by My Illness (New York: Clarkson Potter) 1992, pp. 33-58
Bulgakov, Mikhail. "The Steel Windpipe". In A Country Doctor’s Notebook (London: Collins and Harville Press) 1975, trsl. Michael Glenny
Campo, Rafael. "The Distant Moon, I, II,III, IV". In The Other Man Was Me (Houston: Arte Publico Press) 1994, pp. 113-115
Campo, Rafael. "It Rhymes with ‘Answer’ " In The Poetry of Healing: A Doctor’s Education in Empathy, Identity, and Desire (New York: W. W. Norton) 1997, pp. 222-254.
Charon, Rita. Narrative Medicine: Honoring the Stories of Illness (New York: Oxford University Press) 2006
Chesney, Gregg. "Apparition" In Body Language: Poems of the Medical Training Experience, Jain, N., Coppock, D., Brown-Clark, S., eds. (Rochester, New York: BOA Editions) 2006, p.27
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Clifton, Lucille. "In the inner city". In Good Woman (Brockport: BOA Editions) 1987, p. 15
Condit, Celeste. "How Culture and Science Make Race 'Genetic’: Motives and Strategis for Discrete Categorization of the Continuous and Heterogeneous". Literature and Medicine V. 26, No. 1 (2007) pp. 240-268,
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Duffin, Jacalyn. "Technology and Disease: The Stethoscope and Physical Diagnosis". In History of Medicine: a Scandalously Short Introduction (Toronto: University of Toronto Press) 1999, pp. 191-208.
Ferguson, Laura. The Visible Skeleton Project. Perspectives in Biology and Medicine, 47/2: 159-175, 2004
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Henningsen, Gail R. "What We Don’t Know." The Bellevue Literary Review, Fall 2004 (4/2) pp. 76-85
Hoagland, Tony. "Emigration". In Sweet Ruin (Madison, Wis.: University of Wisconsin Press, 1992)
Iezzoni, Lisa. "Blocked." Health Affairs, 27/1, 203-209 (Narrative Matters), 2008
Iezzoni, Lisa and Freedman, Vicki A. Turning the Disability Tide: The Importance of Definitions. JAMA, Jan 23, 2008. V.299, NO. 3, pp. 332-334.
Jacobs, Michael. "Falling Through" by. In Body Language: Poems of the Medical Training Experience (Rochester, New York: BOA Editions) 2006, p.49
Jauhar, Sandeep. "Heart Rhythms". In Intern: A Doctor’s Initiation ( New York: (Farrar, Straus and Giroux) 2008, pp. 95-99
Klass, Perri. Baby Doctor (New York: Random House) 1992
Lee, Don. "About Gary Soto." Ploughshares Spring, 21/1: 188-192 (1995).
Levin , Meryl. Anatomy of Anatomy (New York: Third Rail Press) 2000.
Mairs, Nancy. "On Being a Cripple". In Plaintext (Tucson: the University of Arizona Press) 1986, pp. 9-20
Manning, Lynn. "The Magic Wand". From Staring Back: The Disability Experience from the Inside Out, ed. Kenny Fries. (New York: Plume/Penguin) 1997
Mates, Susan Onthank "Laundry". In The Good Doctor (Iowa City: University of Iowa Press) 1994, pp. 9-14.
Moore, Lori. "People Like That Are the Only People Here: Cannonical Babbling in Peed Onk." In Birds of America (New York: Alfred A. Knopf) 1999
Mueller, Lisel. "Monet Refuses the Operation". In Alive Together: New and Selected Poems.(Baton Rouge: Louisiana State University Press) 1996, p. 186
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Pope, Robert. Illness and Healing: Images of Cancer (Hantsport, Nova Scotia: Lancelot Press) 1991
Power, Susan. "First Fruits." In Roofwalker (Minneapolis: Milkweed Editions, 2002), Pp. 111-137.
Prince- Hughes, Dawn. Songs of the Guerrilla Nation: My Journey through Autism (New York: Random House/Harmony) 2004
Rios, Alberto. "Day of the Refugios". In The Smallest Muscle in the Human Body (Port Townsend: Copper Canyon Press) 2002
Ritchie, Elspeth Cameron "Language Barrier". In On Doctoring. (New York: Simon & Schuster) 3rd ed, 2001 eds. Richard Reynolds, John Stone, Lois LaCivita Nixon, & Delese Wear, pp. 378-379
Said, Edward. Orientalism. (1978). 1994 Reprint. (New York: Vintage Books) p. 54
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Scannell, Kate. "Sleeping with the Fishes". In Death of the Good Doctor: Lessons from the Heart of the AIDS Epidemic (San Francisco: Cleis) 1999, pp. 23-48.
Soto, Gary. "The Levee." New and Selected Poems (San Francisco: Chronicle Books) 1995
Soto, Gary. "Hand Washing". Junior College (San Francisco: Chronicle Books) 1997
Stone, John. "Gaudeamus Igitur". JAMA, 249: 1741-1742 (1983)
Stone, John. "The Good-bye, Good-Morning, Hello Poem". In Where Water Begins (Baton Rouge: Louisiana State University Press) 1998, p. 16
Stone, John. "Talking to the Family". In Blood and Bone. eds. Angela Belli and Jack Coulehan (Iowa City: University of Iowa Press) 1998, p. 79
Straus, Marc J. "Red Polka Dot-Dress". In Symmetry (Evanston: TriQuarterly Books/Northwestern University Press) 2000, p. 6
Straus, Marc J. "Monday". In Symmetry (Evanston: Triquarterly Books) 2000, p. 38
Transue, Emily R. "Internship in Seattle" In Body Language: Poems of the Medical Training Experience, Jain, N., Coppock, D., Brown-Clark, S., eds. (Rochester, New York: BOA Editions) 2006, p.89
Temple, L.F.K., McLeod, R.S, Gallinger, S., and Wright, J.G."Defining Disease in the Genomics Era". Science. 293/3 August, 807-808 (2001)
Updike, John. "From the Journal of a Leper". In Problems and Other Stories (New York: Alfred Knopf) 1976.
Verghese, Abraham. The Tennis Partner (NY: Harper Perennial, 1999) (HarperCollins, 1998)
Watts, David. "Physical Exam". In Taking the History (Troy, Maine: Nightshade Press) 1999.
Welch, H. Gilbert, Schwartz, Lisa and Woloshin. Steven. "What’s Making Us Sick Is an Epidemic of Diagnoses". New York Times, Science Times, January 2, 2007
Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability (New York and London: Routledge, 1996
Wideman, John Edgar. "newborn thrown in trash and dies." In All Stories Are True (New York: Pantheon/Vintage) 1992. pp. 120-128.
Williams, William Carlos. "The Use of Force". In Robert Coles, ed. The Doctor Stories. 1984
Yalom , Irvin D."Fat Lady". In Love’s Executioner (New York: Harper Perennial) 1989, pp. 87-117.
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Commentary by P. Ravi Shankar, M.D., Department of Medical Education, KIST Medical College, Imadol, Lalitpur, Nepal

Nepal, trekking, and new perspectives

In a previous commentary for this blog I wrote about the development of medical humanities modules in two Nepalese medical schools. In this article I aim to pen my thoughts about trekking in Nepal and the Medical Humanities (MH). Nepal is a small country in South Asia surrounded by two of the most populous countries in the world - China and India. Nepal has among the greatest altitude variations of any country on Earth. The land rises from the flat plains of the 'terai' to Mt. Everest, the highest point on the planet within a distance of 150 km. The hills and the mountains of Nepal are a trekker's paradise and attract people from a number of countries. The unspoiled villages, green hills, verdant valleys and soaring Himalayas are the major attractions. The present population may be somewhere between 27 to 30 million. A number of ethnic groups inhabit the land and more than 500 different languages and dialects are spoken.

How can trekking be related to the humanities? On first glance these two appear very different. MH is an intellectual activity and is pursued by medical students, medical teachers and others to obtain a perspective on the human and humane side of medicine. Trekking is a tiring physical activity where you tramp up and down hills, cross streams and endure cold, heat, sweat and grime. Trekking basically is about freedom and following a simpler and gentler way of life at least when you are on the trek. Karl Benz's motor car is absent and the gently rising middle hills with their river valleys have to be traversed on foot. The air is pure, the light magical, the people friendly and you have stepped back a few decades in time! You follow the rhythms of nature. You go to sleep soon after sunset and wake up with the first light of dawn or even before. Many of the illnesses of civilization are the result of leading a lifestyle not in tune with nature's clock. MH in my opinion searches for the simple in disease and health. This is becoming a difficult task in an increasing complex world and trekking may be of some help!

The landscape can stimulate creativity among the students and inspire them to reflect on life, relationships and death from a 'different' perspective. Also exposure to the legends, voices and rich oral traditions of the mountain villages can enrich the writing and other creative skills of students and faculty. These stories, paintings and other art objects can serve to explore a number of issues in the humanities.

Medical humanities retreats

Trekking regions could be a location for weekend MH retreats. In the Dalhousie University, Canada, weekend retreats in the beautiful Canadian countryside are common during the MH module. In Nepal, the trekking areas can serve a similar function. Cities like Kathmandu and Pokhara have the Langtang/Helambu and the Annapurna trekking regions at their door step and students and faculty can easily trek to some of the nearby villages. Many other cities in the plains also have hill towns nearby. The trekking regions have over the years built up good infrastructure and facilities. Sitting in the dining room of a lodge by a roaring fire as the mist settles in for the evening can be a delightful experience for students and faculty and can lead to a closer and more informal relationship between them. The student-teacher relationship is relatively hierarchical and authoritarian in Nepal and trekking can lead to a more egalitarian and friendly relationship that may be more conducive to learning the humanities.

A cultural and social journey

Most treks in Nepal start in the middle hills though these days roads are making greater inroads. The road head is usually a congested and noisy small town and you can study a village slowly urbanizing. An interesting phenomenon with MH implications! People may either trek alone, with a porter or with a group. The porter is usually a farmer from the hills and it is an interesting experience to walk along this person for days on end. You are offered a different perspective on life and the country! Trekking in a group can also introduce you to other members from a different region or even from a different country.

The middle hills are welcoming with bright sunshine and villages mainly inhabited by the Brahmins and Chettris, the dominant castes in Nepal. Education is becoming more widespread and you can watch children race along the trail to their schools, the same steep trail where you rest and catch your breath after every two steps. As you go on the valley gradually becomes narrower and the river flows through a deep gorge and the terrain becomes increasingly rocky. Magnificent waterfalls and dense forests create an enchanted atmosphere. The going is tough but the reward is great! After a few days travel you reach the dry Tibet-like valleys behind the Himalayas. These are mainly inhabited by Bhotia communities of Tibetan extraction. This is a classic description of the Around Annapurna, Around Manasulu or even the Everest trek from Jiri. However, you can also fly in to a remote airfield and then start your trek. There are also shorter treks for those short on time.

Difficulties in accessing health care, and the modalities followed by the inhabitants to cure disease and protect health are important issues for the Medical Humanities. Because of the mountainous terrain, the volatile and unstable political situation with its prolonged conflict and poor socioeconomic development, modern health care may sometimes be many days walk away. Complementary Medical practitioners and faith healers often fill in the yawning gap for health care. Thus complementary medicine, rising standard of living, increasing number of trekkers and access to medical care are closely interlinked.

Access to health care, standard of living, and complementary medical systems

Many of the villages are situated one or two days walk from the nearest road head and to reach them you have to walk up and down winding trails through the hills. You can see first hand the important role complementary practitioners play in providing health care. Sick persons are also often carried in baskets on the back of sturdy village porters to the nearest health centre or hospital. The basket is often called the 'hill ambulance'.

The main trekking areas have seen a rise in the standard of living along with westernization and a change in the outlook. The approach to illness and its treatment is also changing. Western medicine is being more widely accepted and westerners (even trekkers) are regarded as doctors and experts in modern medical care. The farmers are able to supplement their income through the cash earned from trekkers and the traditional subsistence village economy has been replaced by a cash one. The overall health status has improved but the diseases of civilization are slowly beginning to make an appearance.

In the middle hills, Hinduism is the main religion and ayurveda and herbalism are the main medical systems. Faith healing is also common. In the gorges, the Buddhist influence becomes stronger and shamans become the main faith healers. In the trans-Himalayan valleys, Tibetan medicine dominates and the practitioners called 'amchis' cater to the healthcare needs. Modern allopathic health centers and hospitals are also present in a few areas mainly manned by paramedics. The process of creation of an indigenous medical system, its interaction with other medical systems and with western allopathic medicine (which came from the cities) can be a fascinating subject of study. The complementary systems offer a different perspective and while not always scientifically rigorous like the allopathic system may be more holistic considering man in the perspective of the cosmos.

Progress made

In the recent decades tremendous progress in healthcare indicators and access to health care has taken place. Education is becoming widespread among the younger generation. The importance of clean drinking water, sanitation, proper sewage disposal is becoming evident to the rural and the underprivileged urban populace. A number of health centers, health posts and subhealth posts (institutions delivering primary health care) are being set up and both doctors and paramedical workers are looking after the health of the population. Community hospitals and dispensaries have been set up in many areas and good quality medicines are being manufactured in the country. Nepalese manufacturers now meet more than 40% of the country's requirements and this proportion will increase in the future. Students can see first hand these changes in the rural areas of Nepal. These changes are also present in urban areas but are more dramatic and easier to study in the rural areas.

Humanities issues of particular concern to Nepal

The major humanities issues of particular concern to Nepal in my opinion are to encourage a caring attitude towards patients, taking into consideration the patients’ weak socioeconomic conditions in treatment decisions; help patients make proper decisions about treatment and health care; promote service in rural and underprivileged areas; play a role as a motivator and an agent of change in rural communities; develop good working relationships with complementary medicine practitioners and involve them in making healthcare accessible to the underprivileged; and adapt western allopathic medicine to a traditional setting. Many of these issues may also be applicable to other countries in South Asia.

Thus trekking can serve to introduce, highlight and underline a number of MH issues in the Nepalese context. The exposure to fresh air, fresh food and an unhurried pace of life can do wonders for the mental and physical health of the students and faculty. The unhurried environment allows for deep reflection and in depth study of a number of issues. Thus trekking and the humanities may be closely related in the Nepalese context. The challenge is to explore and utilize the connection to the full!