Literature, Arts and Medicine Blog

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.

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:

WORDS/STORIES——————-PERSONS———————-COMMUNITY

WORDS/STORIES

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).

PERSONS

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.

First tributary: THE HOUSE OF VOICES /IN THE EMBODIED PERSON/ IN THE MORAL LIFEWORLD

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

Second tributary: EXPRESSIONS OF MORAL REFLEXIVENESS/OUR MORAL BEING IN THE WORLD

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.

Third tributary: REFLECTIVE PRACTICE/DOING MEDICAL ETHICS OR BIOETHICS THROUGH PARTICULAR FRAMEWORKS

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.

COMMUNITY

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’—“where youth and age are…. accepted as part of the natural life cycle” (p. 33).

 I  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).  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.

References

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.  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

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

The University of North Carolina School of Medicine’s Bullitt History of Medicine Club held numerous interesting talks in 2008-2009 that are available online at their site.

Felice Aull

Commentary by Ted Meyer, Los Angeles-based artist. Meyer’s work is on exhibit through June 15 in the Smilow Gallery at NYU School of Medicine. Free and open to the public.

Every time I travel, people ask me if I expect to incorporate my travels into my painting. Will there be an Indian elephant or a zebra showing up in my work? I tell them all that I am not that sort of artist. No landscapes or sunsets for me. I explain that my work comes from a very internal place. For years it was Ted-centric and only dealt with my struggles to have a normal day-to-day existence. I was oblivious to elephants in my art though I have enjoyed riding them.

Since my childhood, I have created work about being sick or in pain. It all started with the “Art Lady” who brought her art cart to my hospital bed and suggested I make compositions with band-aids and IV tubes. Mixing illness and art seemed a normal confluence.

When I was older, I painted pained figures and broken bones. Progress I guess. Self directed art therapy, for sure.

After new treatments, joint replacements, operations and infusions I felt that I was pretty much normal and found myself a bit lacking in artistic direction. I didn’t feel it was honest to continue making art about being sick. I needed a new direction but nothing came to me and I refused to draw sunsets.

Now much of my work deals with others because of a chance meeting over 10 years ago. That was when I learned that a life can be changed by meeting one special person at just the right time. For me that person unexpectedly arrived at one of my art openings. It was a very Los Angeles kind of affair. I was in conversation with celeb guest Henry (The Fonz) Winkler and Candice Bergen when SHE rolled into the gallery, A beautiful woman whose grace only seemed enhanced by her wheelchair. She wore a stunning black dress with a low back. I couldn’t help but notice the long scar that graced her back.

Over time we had many conversations about our situations. She had fallen from a tree while a counselor at a summer camp. Still, she performed with a noted dance company and has had many roles on television and on stage. I was born with Gauchers disease and spent many years in some level of pain or discomfort. We shared a common acceptance of our differences to that of the “normal” population.

Before this meeting, I had never thought much of my own scars and I had many from multiple joint replacements, a splenectomy and the normal childhood emergencies and accidents. Most of my early artistic career focused on me, my body and my illness which I visualized as a very internal thing. I created images that reflected on the damage done to my bones and the mental pressure to choose treatments with new and experimental drugs.

During one of our talks, we discussed how her condition was obvious yet mine was totally hidden as long as I was dressed. We talked about our scars and what they represented and what it meant to allow others to view them.

I became focused on her scar as a way to tell a story. How rods had been inserted and removed from her body. How each operation on her back left additional markings. How the scar made visible the exact place her spine had been damaged. Her scar was not just a marker of her ability but rather a road map of what made her life unique. It wasn’t just a scar. It was HER scar. Something that no one else had. Not only did it make her physically unique but emotionally different. If I no longer had anything to say about my medical condition maybe I should make a statement about how I viewed other people’s lives and conditions. Maybe I’d become a documentarian. An artistic Studs Terkel.

Scars mark a turning point in peoples’ lives - sometimes for good but often otherwise. Each scar comes with a story. Why is it there? Would the person have died without surgery? How did the “scarring event” affect them emotionally? Scars can mark entering into or out of a disability. Going from cancer to health, limited mobility to full movement. They freeze a moment in time, a car accident or gun shot.

My mono-prints, taken directly off the skin of my model-subjects are portraits of those events that changed their lives. I accentuate the details of the scar with gouache and color pencil.

My hope is to turn these lasting monuments, often thought of as unsightly, into things of beauty.

Note:   Sections of this commentary have been excerpted from the artist’s catalog for Scarred for Life.

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.

Conclusion

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.

References
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..

Commentary by P. Ravi Shankar, M.D. and Rano Mal Piryani, M.D., Department of Medical Education, KIST Medical College, Lalitpur, Nepal

A previous blog (Shankar R., Medical Humanities: Sowing the Seeds in the Himalayan Country of Nepal). and journal articles (1, 2) described medical humanities modules at two Nepalese medical schools. Here we discuss some aspects of language choice when teaching medical humanities to participants.

Language is a touchy issue among students. Many Nepalese medical schools admit students from Nepal, India, Sri Lanka and few students from other countries. Most Nepalese students have Nepali or Nepal Bhasa (Newari) as their mother tongue. The Indian students speak a variety of languages; however, Hindi is the national language of India. Neither group is favorably disposed towards the other’s language. English is the medium of instruction and is accepted by all (students and teachers).

Multiplicity of languages

The multiplicity of languages spoken in South Asia creates its own set of problems. Often the language of the dominant ethnic or religious group or of the majority of people is selected as the national language. However, the minority groups are often decidedly lukewarm towards this ‘national language’ and feel they may be at a disadvantage compared to ‘native speakers’ with regard to the national language. English often steps in as a compromise language. Due to the British legacy English is a familiar tongue and is also not the ‘mother tongue’ of South Asia’s various ethnic groups. Only a very small minority have English as their native language. So all groups have an equal status as regards English and the issue of language can be resolved amicably at least for a certain period.

Language of higher education

English is the language of higher education in Nepal. Classes are conducted in English in universities and colleges. The language of interaction in the classroom may be Nepali or other languages. Also often the slides and other audiovisual materials are written in English while the subject matter is explained and discussed in a mixture of English and Nepali. Certain posh English medium schools in South Asia insist that students use only English within the campus to ensure that they become more familiar with English, especially the spoken language.

Language of teaching the Medical Humanities

A voluntary Medical Humanities module was conducted at the Manipal College of Medical Sciences, Pokhara, Nepal (1, 2). The majority of student participants were from two countries, Nepal and India. Literature and art, case scenarios, group work, debates and role plays were used to explore various aspects of the humanities. The debates and role-plays were conducted in English and language did not seem to act as a barrier to communication. The only problem noted was with literature excerpts. The English was felt to be tough on occasions by the participants and they had difficulty identifying with the situation depicted in certain excerpts.

The authors had conducted a module for faculty members and medical/dental officers at KIST Medical College, Imadol, Lalitpur, Nepal which also used English as the language of learning. The difference from MCOMS was that most of the participants were Nepalese. The authors used ‘different’ literature excerpts keeping in mind feedback from the participants of the Pokhara module. The excerpts were simplified. However, again the participants had problems with certain of the literature excerpts. Language difficulty and inability to identify with the situation depicted were again cited. The role-plays were conducted in Nepali and the group work was presented using a mixture of Nepali and English. As is common, the writing was in English but the presentation often in Nepali!

Art as a substitute for literature

At present, the authors are conducting a module for medical students at KIST Medical College. Six of the faculty participants of the previous module have joined as facilitators for the student module. The module again uses English as the language of learning. Keeping in mind previous experiences, the authors are not using literature excerpts in the module. It has been our consistent observation that painting and art has the ability to overcome linguistic, cultural, social and other barriers. We are using paintings for various sessions and the feedback has been positive. The role-plays are usually conducted in Nepali and the group work presentations are carried out in English and Nepali.

Jekyll & Hyde

We feel that being exposed to English right from childhood, students in South Asia accept it as a working language. Most however, speak a different language at home and this causes a dichotomy. May be we develop a split personality, a kind of Jekyll and Hyde phenomenon. English describing common place events and household and social activities may be especially difficult as these events are often described using local languages in our setting. Fruits, vegetables, flowers, common implements and religious and other customs and ceremonies common in the west are often difficult for South Asians to understand and comprehend.

Disadvantages and Advantages of English

Using English has the disadvantage of excluding patients from deliberations and decisions about their condition in many cases and may preserve and perpetuate an elite, snobbish image of the medical profession. Does thinking in the western language westernize our thoughts and our outlook? Do we loose the ability to think and understand the native perspective? Do we become ‘brown sahibs’? Could this be one of the reasons behind the massive brain drain and migration to the English speaking west? Are we becoming strangers in our own countries?

English also has many advantages. South Asians have easy access to the vast amount of medical and non-medical literature written in English. In the case of the Medical Humanities we were and are fortunate to be able to access and use material in English. Also we can more easily communicate our findings and observations to other workers in the field. Western teachers also find it easier to help and contribute to a course using English as the language of learning.

Language and literature

We wonder, sometimes whether language is the only factor behind this lack of identification with and difficulty in understanding literature. In South Asia, after completing ten years of schooling students diverge into three streams, arts (humanities), commerce, and science. The top ranking students usually go for science. For getting admission to medical school it is mandatory that the student takes the science stream and studies Physics, Chemistry and Biology during the last two years of schooling. A study conducted at MCOMS had shown that preclinical students read widely beyond their course and were interested in literature. (3) However, information on reading habits of doctors is lacking. Could it be possible that doctors have not developed the ability and the aptitude to understand and appreciate literature? A demanding professional career may have prevented them from developing interests beyond medicine. Could the teaching of arts in schools, or the lack of it, have been partly responsible for this lack of interest? Certain aspects of arts and crafts teaching in South Asian schools and the language of instruction at school have been covered in a recent blog article (Shankar R.  Arts and humanities: a neglected aspect of education in South Asia, British Medical Journal: Medical Humanities blog).

Our experience with using English for humanities modules has been largely positive. But as English is the medium of instruction in medical school we are conditioned to the language and the viewpoint and thinking framework it imposes. Most of us are comfortable with English and will have difficulty dealing with technical medical terms in native languages. I think we will continue to use English as the language for Medical Humanities modules as long as it remains the medium of instruction. We have accepted its advantages and disadvantages and at present are unable to look beyond English. Eventually English may become more localized and accepted as a South Asian language or the region will develop another link language and medium of instruction. Which one of these two scenarios will come to pass only time will tell but considering past and present experience we think the former may be more likely!

References:
1. Shankar PR. A Voluntary Medical Humanities Module in a Medical College in Western Nepal: Participant feedback. Teaching and Learning in Medicine (in press)
2. Shankar PR. A Voluntary Medical Humanities Module at the Manipal College of Medical Sciences, Pokhara, Nepal. Family Medicine 2008; 40:468-470.
3. Shankar PR; Dubey AK; Mishra P; Upadhyay DK. Reading Habits and Attitude Toward Medical Humanities of Basic Science Students in a Medical College in Western Nepal. Teaching and Learning in Medicine 2008; 20:308-13.

King’s College London has established a Center for the Humanities and Health, with the help of a Wellcome Trust award. They are offering a research fellowship. The deadline for submission is May 5.

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

Introduction

 The 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.  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 stages  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.  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.  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

 One 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.  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.  To do this, we realized that framing the ideas we wanted to explore would be important.  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.  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.  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.  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.  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.  We held the lecture-discussions in the gallery itself, with the portrait works all around us.  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.  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.  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.  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.  She said only as she understood the meaning of the project for her husband did she  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.  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.  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.  Both roles are difficult and demand changes in who each is as a person, in personal identity, the topic of the second lecture -discussion.

Introspection

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.  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.  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.  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.  In this presentation, Gilbert spoke from the artist’s point of view, emphasizing the effect that the project had upon him.  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.  Then 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.  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.   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.  It was equally clear that for those in attendance, the most critical element of care is the human element.  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.

Conclusion

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.  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)    or the curator Hesse McGraw at  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:  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