The "Parallel 'Parallel Chart'"

March 8, 2010 at 5:58 pm

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

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

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

Interactive Reflective Writing

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

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

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

The Teacher's Experience

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

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

Concluding Reflections

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

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

References

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

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

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

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

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

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

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

8. Jacobus, L. http://literatureartandideas.blogspot.com/ [Accessed February 16, 2010].

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

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

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

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


Fostering Interdisciplinary Community: A Humanities Perspective

February 18, 2010 at 6:42 pm

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

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

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

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

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

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

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

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

Narrative Medicine: A New York Physician Blogs From Haiti

January 25, 2010 at 6:24 pm

I can’t help calling attention to a blog being written by Dr. Fritz Francois, an internist at NYU School of Medicine, who helped to coordinate a team of physicians, including himself, who are currently helping out in Port-Au-Prince, Haiti. In addition to providing medical assistance, Dr. Francois is translating from Creole to English and vice versa. His blog is well-written, observant, and thoughtful. In addition to Nice Wife, see also, for example, Priming the Senses.

Breast Milk As Medicine And Virus: Modern Maternity And HIV/AIDS

January 15, 2010 at 5:56 pm

John & Penny Hubley, Wellcome Images, London Breast feeding: health promotion . In this urban slum in India, a poster on mother and child health and breast feeding is being tested. Ideally, health education programms should start with trials in small groups before wider implementation.  Second half 20th century

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

Biologically speaking, breastfeeding has always been a health-promoting practice of motherhood. Within modernity, breastfeeding has become a consciously health-promoting activity through a complex historical development that has rendered all forms of eating and nutrition as analogs to a healthy lifestyle. To single out breastfeeding may seem to ignore the ways in which many other foods have become medicalized in the last half century. After all, eating has long been the focus of health advocates and lifestyle politics in the United States. Yet what is specific to the figuration of breast milk as medicine concerns, at least in part, the fact that breast milk is the only food produced in the human body for human consumption, and it is produced almost exclusively by female humans.

Breast Milk as Medicine

Breastfeeding's contribution to health is imagined through the representation of breast milk as medicine. This figuration appears prominently in guidebooks for new mothers. La Leche League's The Womanly Art of Breastfeeding contains a short section in its first chapter where the reader learns that breastfeeding provides not only the "best possible infant food," but that it aids in contracting the uterus after birth, helps the development of the infant's jaw and facial structure, "safeguard[s]" the baby against the development of food allergies, "inhibit[s] the growth of harmful bacteria and viruses," contributes to a higher IQ for the baby, protects the mother from breast cancer, ovarian cancer, urinary tract infections, and osteoporosis, and contributes toward the sex education of older children. (1) In another example from a global publication on breastfeeding and HIV, colostrum is defined often as "the infant's first vaccine." (2) In yet another example, this one from a local breastsfeeding coalition newsletter, a neonatologist writes, "The benefits of breastfeeding in terms of species specificity, balanced, changing nutrients and enzymes, host resistance factors, immunologic protection, allergy protection and psychosocial development, make breastmilk [sic] the most important and cost effective substance we have in medicine today." (3).

I believe that these claims concerning the biological benefits of breastfeeding are true, by the way. The point here is to examine the unfolding of a story about breast milk as medicinal, not to question the biological truth-claims of such a story. In the short section of The Womanly Art of Breastfeeding cited above, the new or expectant mother learns to think of her body as producing a substance with effects that are defined and measured in medical terms. Almost all breastfeeding advocacy in the United States works on this model—medical benefits and measures of breastfeeding's "natural superiority" couched in language also suggesting the central closeness that emerges in the mother-infant breastfeeding relationship.

Cultures of Breastfeeding/Breastfeeding in Culture

In general, breastfeeding operates within cultures as a behavior promoting the core values, beliefs, and practices of that culture. For example, in The Afterlife Is Where We Come From, anthropologist Alma Gottlieb demonstrates that West African Beng culture treats infants very differently than conventional U.S. families, understanding infantile behavior to be essentially unpredictable and without a knowable cause. Scheduled feeding and sleeping is an unknown value and thus not sought after, even though mothers are often separated from infants of 2 months of age when they return to work in the fields. While some maternal infant feeding practices, like feeding newborns and young infants water before nursing, are rationalized as healthful, Beng conceptions of health are themselves mediated primarily by spiritual belief rather than by medicine as an institutionalized form of knowledge about the body. (4)

In heavily medicalized contexts like the United States, the "nature of infants" is understood to be biologically determined; infants fuss because of a physical or physiological need. Scheduling feedings corresponds to a belief about "normal infants" as cohering to cultural values; "good babies" are those who eat at specific times and sleep in predictable, lengthy units (especially at night). (5) All of these factors are presented in advice books as healthful because they are understood to be biologically appropriate for growing infants, yet it is not hard to discern that medical ideas provide a justificatory rationale for culturally specific practices and perspectives on infant behavior.

In addition, a discourse of mother-infant closeness is grafted onto the medical narrative of biological causation, bolstered by pseudo-scientific ideas of "bonding." (6) The loving relation of mother to baby is founded on the transfer of a medically pure substance in a gift exchange. (7) This gift of breast milk is also a gift of medicine itself. Breast milk is not just a nutrient with medicinal effects, like an "anti-oxidant" or vitamin, something that helps avoid allergies and disease, but a pharmacological substance, a product associated with medical research and industrial production.

Yet what makes breast milk special is that it comes from women's bodies-it is figured as food and medicine made by women. It is also part of a cultural debate—longstanding and largely displaced from explicit social recognition—about whether mothers can really succeed at mothering. Cultural messages about pure milk and the implication that breast milk itself is medicinal are bound up with presumptions about good mothering and the embodied purity of good mothers. (8)

Scientific Motherhood

Scientific motherhood, defined initially by Rima Apple in Mothers and Medicine and developed in her later book Perfect Motherhood, is the notion that maternal practices are best subjected to the authority of medicine and the (presumably male) physician. (9, 10) In the context of scientific motherhood as an ideology, maternal knowledge and traditional practices do not hold the same authority as the scientifically derived understanding of doctors; thus, individual mothers are taught to rely on the advice of expert professionals. The best mothers are those whose practices promote growth and development that can be defined and measured by medical personnel.

Currently, in the United States, breastfeeding is a practice in service to the ideology of scientific motherhood, and, at least discursively, breast milk is the product that leads to the medically defined "healthy development" of babies. "Good mothers" are also narrative effects of these practices, figured through their selfless labor in relation to their infants' health, their disciplined relation to their own body projects, and their attentiveness to the purity of their own bodies. Scientific motherhood is a white ethnoracial and middle-class construct, although it serves as a model for all women's behavior and many different groups of women subscribe to its values. Scientific motherhood has also transformed the disciplinary experience of being a maternal body. If, in the early part of the last century, mothers were encouraged to stop feeding coffee to their babies because coffee stunted the growth of infants and led to digestive problems, now we see in pregnancy and infant care guide books advice to mothers to eliminate or diminish their own consumption of coffee and caffeinated beverages in order that the caffeine not affect their fetus or nursing infant.

Barbara Duden has discussed this kind of thinking as the figuration of the maternal body as an ecosystem, and she argues that its overall effect is to disembody women. (11) What this development alerts us to is a perception of the female body itself as a danger to fetuses and infants, for what mother can keep herself clean enough to avoid the transfer of some noxious agent? We are all the repositories of the chemicals that permeate our environment. In another historical shift, in the 1970s and 80s the body of the mother was posed against the bottle as the source of goodness figured against poison. If the image was striking—as the Nestle boycott meant it to be—it was effective. Now, however, the body of the mother is not clearly the good ending to the story of how to keep babies healthy and alive; it is instead implicated in the illness narratives of her infant. And there is no limit to the purity that can be demanded.

Breast Milk as Virus

The advent of HIV/AIDS has made salient the viral possibilities of breastfeeding. The opposition medicine/virus operates to enhance medicine's authority over mothers. In its articulations in affluent countries, it contributes to maternal anxiety and concern over breastfeeding. In poor countries, where the majority of HIV-positive mothers live, uncertainties about the meaning of breast milk are intertwined with bleak outcomes for many infants and children.

Biomedical research itself is not uniform in its understanding of mother-to-child HIV transmission rates and optimal feeding protocols. The World Health Organization (WHO) has developed guidelines for infant feeding in the case of maternal HIV infection that emphasize maternal informed choice. The AFASS criteria—which define whether replacement feeding is ACCEPTABLE, FEASIBLE, AFFORDABLE, SUSTAINABLE, and SAFE—are supposed to be evaluated in each instance. If these criteria cannot be met, mothers are counseled to breastfeed exclusively during the first months of an infant's life. Yet scholars suggest that myriad factors interfere with the model of rational decision making imagined in these guidelines. Indeed, sometimes even the simple understanding that a mother's milk contains HIV will be enough to convince a woman not to breastfeed, regardless of her circumstances (12, 13).

"Informed choice" situates the mother in the middle of a scientific and social controversy, and then asks that she make a decision responsive to her material and social circumstances and an abstract understanding of biomedical risk. HIV-positive mothers are figured as modernized individuals whose success at mothering is a blend of rationality, choice, and options. It is my view that these guidelines implicitly imagine the privileged mothers of the global north as their exemplary ideals, mothers for whom "choice" is understood (however improperly) as a relatively free endeavor and whose choices are supported by the social, cultural, and medical infrastructure of their communities.

Choice, Breastfeeding, and Modern Motherhood

It is not that I would want to deny choice and the agency it relies on to (mostly impoverished) HIV-positive women. Rather, I'd like to suggest that we need to reorient the utopian views of good mothering that frame and constrain our perceptions of what mothers do and the choices they make. Mothers need to be understood as neither the repositories of pure nutrition nor the potentially infectious contaminators of the young, but as materially embedded subjects whose bodies are of this world as everyone's are. It is probably impossible to return to breastfeeding a set of meanings untouched by medicalization, but it is possible to construe its significance as not completely captured by medical narratives and understanding.

Medical narratives that frame good mothering as the result of rational choices made on the basis of biological imperatives ignore the social and cultural contexts of practice that exist for all mothers. The medical framing of breastfeeding has obscured for many of us the important cultural functions that nursing enacts, and thus makes it difficult to see how HIV-positive mothers are affected by multiple social determinants. It is not just that the affluence of the global north makes understanding the practices of impoverished mothers of the global south difficult; it is that we no longer believe that breastfeeding has any other meaning than to create (biomedically) better babies.

It is my view that the biomedical and public health struggles over how to advise HIV-positive mothers point us toward larger issues concerning the social meaning of mother's bodies and mother's practices. These are, in Anthony Giddens's words, some "consequences of modernity." (14) To offer women more than a strait-jacket of choice, we might begin with a revision of the stories told about breastfeeding, especially those that suture its meanings to medicine and normative expectations of maternity.

References
1. La Leche League International. The Womanly Art of Breastfeeding. 6th ed. Schaumburg, Ill.: La Leche League International, 1997, 6-7.
2. Linkages. Infant Feeding Options in the Context of HIV. Washington, DC: Academy for Educational Development, April 2004. Web. www.linkagesproject.org (accessed October 15, 2004).
3. Wight, Nancy E. "Breastfeeding in High Risk Populations: The Mom with Hepatitis." Breastfeeding Update (San Diego County Breastfeeding Coalition) 1, no. 4 (December 2001): 1, 4. Web. www.breastfeeding.org/newsletter/v1i4 (accessed March 8, 2004). Emphasis added.
4. Gottlieb, Alma. The Afterlife is Where We Come From: The Culture of Infancy in West Africa. Chicago: University of Chicago Press, 2004.
5. Millard, Ann V. "The Place of the Clock in Pediatric Advice: Rationales, Cultural Themes, and Impediments to Breastfeeding." Social Science and Medicine 31, no. 2 (1990): 211-21.
6. Eyer, Diane E. Mother-Infant Bonding: A Science Fiction. New Haven: Yale University Press, 1993.
7. Golden, Janet. A Social History of Wet Nursing in America: From Breast to Bottle. Cambridge History of Medicine. Cambridge, U.K.: Cambridge University Press, 1996.
8. Meyer, Dagmar Estermann, and Dora Lucia de Oliveira. "Breastfeeding Policies and the Production of Motherhood: A Historical-Cultural Approach." Nursing Inquiry 10, no. 1 (2003): 11-18.
9. Apple, Rima D. Mothers and Medicine: A Social History of Infant Feeding, 1890-1950. Wisconsin Publications in the History of Science and Medicine, no. 7. Madison: University of Wisconsin Press, 1987.
10. Apple, Rima D. Perfect Motherhood: Science and Childrearing in America. New Brunswick, NJ: Rutgers University Press, 2006.
11. Duden, Barbara. Disembodying Women: Perspectives on Pregnancy and the Unborn. Translated by Lee Hoinacki. Cambridge, MA: Harvard University Press, 1993.
12. Blystad, Astrid, and Karen Marie Moland. "Technologies of Hope? Motherhood, HIV, and Infant Feeding in Eastern Africa." Anthropology and Medicine 16.2 (August 2009): 105-18.
13. Moland, Karen Marie, and Astrid Blystad. "Counting on Mother's Love: The Global Politics of Prevention of Mother-to-Child Transmission of HIV in Eastern Africa." In Anthropology and Public Health: Bridging Differences in Culture and Society, Second Edition, edited by Robert A. Hahn and Marcia C. Inhorn, 447-79. New York: Oxford University Press, 2009.
14. Giddens, Anthony. The Consequences of Modernity. Stanford, CA: Stanford University Press, 1990.

Nurse-Poet-Writer Cortney Davis Responds To Thomas Long’s Blog On Nurse Writers

January 6, 2010 at 4:32 pm

Commentary by Cortney Davis, MA, APRN, Nurse practitioner, Sacred Heart University Health Services, Fairfield, Connecticut

Thank you to Dr. Thomas Long for his excellent blog entry and for his continued championing of nurses' writing. I also wonder why nurse-writers don't have a wider audience. Specifically, as I see more and more narrative medicine courses offered to medical students, I wonder why many nursing programs still fail to utilize the creative writing of nurses-why not narrative nursing courses? After reading Dr. Long's blog, I asked my husband, a physician, why he thought nurse writers were not as well respected (and as widely read) as doctors who wrote. His answer was immediate: "Authority," he said. "People think that because doctors have more authority in the work place, they also have more authority on the page." There is certainly some truth in this, as Long points out. Doctors are often seen as the embodiment of strength and "curing" and nurses, whether male or female, are often seen as the embodiment of a softer, more feminine "caring"-and I think there are other factors at work here as well.

One reason nursing programs may have been slow to incorporate nurses' writing is the myth of "natural empathy." Some have assumed that those who go into nursing are already compassionate and empathic (sometimes they've even been seen as bleeding hearts, ruled by the emotions and not by the mind). Therefore it might seem that nursing students, those sensitive souls, wouldn't require the humanities to awaken them to their patients' suffering. The companion myth is that of the "distant physician." It's often assumed that medical students are more interested in the illness than in the patient and therefore would benefit from studying the humanities in order to become more empathic providers. Of course, neither myth is valid, although there is a kernel of truth in both. Indeed, when nurses first began publishing their creative writing, some of that writing was overly sentimental and, in some cases, poorly crafted. When doctors first began offering their creative writing, some of it was overly cerebral and occasionally cold. Now, after several decades, nurse- and doctor-writers have honed their skills and found their voices; the best of them are accomplished, professional and writing on equally high levels.

Another factor relates both to the question of who has the authority and to the myth of natural vs. learned empathy. "Nursing Education," that big generic machine, for many years also viewed, if secretly, physicians' work as having more authority, if not more worth, than nurses' work. This bias was spurred on by many things, including the belittling of the nursing profession by doctors, by hospital administration, by the media, and sometimes even by patients and nurses themselves. This led nursing educators to do their best to rid nursing programs of any hint of "softness"-that natural empathy taken to its limits-and to forge nursing education into a research-based, scientific endeavor. As Long notes, this brought the study of nursing from the hospital bedside to the classroom. Almost at the same time, in the 1970s, along came "medical humanities," the study of literature meant, among other things, to foster more empathic, nurse-like compassion in medical providers. As medical schools began offering courses in the arts, humanities and creative writing as a way to increase students' awareness of the "softer side" of caregiving, nursing programs hurried ever farther away from touch and ever closer to technology.

Nursing, it seems to me, missed the boat; only now is it, in some instances, trying to catch up. Still, the majority of nursing programs today have neither the time nor the inclination to offer humanities or writing courses to student nurses. If nursing students are asked to keep journals, the journals are too often seen as an exercise tangential to the real studies; when medical students are asked to keep journals, the journals are often lauded as intimate glimpses into the trials and triumphs of learning medicine-and some of those journal entries are published as beacons to guide other medical students. If the majority of nursing programs are not honoring the creative writing of nurses and using that writing to help guide their students, should we wonder why the names of the best nurse-writers producing poems, essays and novels today are not well known?

That said, some interesting things are happening which give me hope that, little by little, nurses' writing is moving into a more mainstream consciousness. Nurses' creative writing, while still for the most part under utilized within nursing education (and here let me recognize and thank Thomas Long and the many other educators who do value nurses' writing and fight to include it in their courses), is becoming more and more visible, as Long also points out, in the "secular" literary world. Rattle, an excellent and widely read literary journal, featured a "Tribute to Nurses" in the winter 2007 issue, publishing poems and essays by 24 nurses. Many of the poetry volumes, novels and essay collections by nurse-writers have been published by literary presses-among them the University of Iowa Press, Calyx Books, Beacon Press, Random House, and Kent State University Press-rather than by nursing presses. Many nurse-writers have won impressive literary awards-including National Endowment for the Arts Fellowships-which have no connection to nursing or medicine. It seems to me that nurses who write are finding new and exciting outlets and are being recognized not as nurse-writers but as writers.

Yet, within the halls of nursing and medical education, until we move beyond myth and presumption and accept that nurses and doctors are co-workers in the same mysterious and amazing world of caregiving; that we all long to find ways to deal with the complicated emotions our work engenders; that we all want to know what others like us are thinking and feeling; and that we all have essential stories and important contributions to make to students and to the humanities canon-well, until then, we nurses who write, although literary equals to physicians who write, will not enjoy equal recognition.

Remember The Nurses

December 30, 2009 at 5:01 pm

Remember the Nurses - Lithograph 1939 - 1945, Wellcome Library, LondonCommentary by Thomas Lawrence Long, Associate Professor-in-Residence, School of Nursing, University of Connecticut

Name three popular physician writers working today.
Atul Gawande. Pauline Chen. Oliver Sacks. Jill Bolte Taylor. Jerome Groopman. Rafael Campo. Deepak Chopra. Edward de Bono. Andrew Weil.

Well, that was easy.
Now name three physician authors who are part of the Western literary canon.
Hippocrates. Galen. The author of the Gospel According to Luke and of Acts of the Apostles. Hildegard of Bingen. Charles Eastman. Arthur Conan Doyle. Anton Chekhov. William Carlos Williams. Oliver Goldsmith. Thomas Browne. John Polidori. Oliver Wendell Holmes, Sr. Lewis Thomas. Thomas Bowdler (unfortunately).

An embarrassment of riches. That was easier still.
Now name three nurse authors, who are either writing today or are part of the literary canon.
All right, I'll give you twenty-four hours to get back to me.

Where Are the Nurse Writers?

Paradoxically, the healthcare professional field established by a prolific Victorian English author, Florence Nightingale (whose 1859 Notes on Nursing: What Nursing Is, What Nursing is Not has never gone out of print), finds few of its writers on the tips of our tongues. And even at the origins of professional nursing in the United States during the Civil War, one of America's most beloved authors, Louisa May Alcott, started her literary career with Hospital Sketches, an account of her experiences as a nurse in a military hospital.

Why are there so few well known nurse authors? And what nurse writers are ready to be discovered by a larger audience?

When I have asked nurse editors and scholars the first question, the answers have centered on two points. First, nursing has often been viewed (and until recently nurses viewed themselves) as ancillary, literally ancilla, handmaiden, a feminized, subservient profession deferring to the physician. Not only was the nurse not expected to have insights into the human condition; she (and the nurse usually was female) did not have the "room of one's own" to enable reflection and literary productivity. The physician had his (and the physician usually was a man) office as a retreat, while nurses just had . . . the nurses station-a public location at the hub of medical care and utterly lacking in privacy or solitude.

Second, nurses often were not educated for their profession in the tradition of the liberal arts and sciences. Instead they were frequently trained in hospital nursing programs, or since the second half of the twentieth century at community colleges in two-year associate of science degree programs. Baccalaureate programs in nursing have been a feature of the nursing curriculum since earlier in the twentieth century, but many nurses even today are not the products of that broadly general education.

Nursing Writing

Nurses seem uniquely equipped, however, to comprehend the whole person of the patient, spending considerably more time with the sick than physicians do and aware of the entire psychological, social, and spiritual inflections of their patients. Nurses have historically been encouraged to keep journals and diaries of their clinical experiences, so the raw material for memoir is in fact at hand. As Jane E. Schultz observes of the contrast between clinical accounts by Civil War military physicians and those by their nurses:

Though nurses' styles of self-expression differed widely, they wrote about their patients with a singular degree of material specificity, and they resisted surgeons' tendency to blur patients' individual characteristics. In their letters and diaries, they referred to patients by name, frequently mentioning hometowns, culinary tastes, or other distinguishing details. Often they quoted their conversations with soldiers, which surgeons who kept diaries rarely did. . . Surgeons' diaries do not show nearly the same individualization of suffering. They were more likely to refer to their patients in the abstract or to refer to the clinical details of a particular treatment without mentioning the soldier's name at all. (378-379)

Civil War nurse diaries are among the more vivid and moving accounts of the war, whether from the hand of the domestic Louisa May Alcott, or the sensationalist S. Emma E. Edmonds, author of the memoir Nurse and Spy in the Union Army. Moreover, feminist critic and literary scholar Elaine Showalter in an introduction to Florence Nightingale has characterized Nightingale as a major literary figure in English feminism, bridging Mary Wollstonecraft in the eighteenth century and Virginia Woolf in the twentieth.

Who are Nightingale's literary descendants working today? They are men and women, and they are many. They are working in a variety of genres, and their work has earned frequent anthologizing. Cortney Davis and Judy Schaefer's two collections, Between the Heartbeats: Poetry and Prose by Nurses (1995) and Intensive Care: More Poetry and Prose by Nurses (2003), have brought nurse writers to a wider audience. Schaefer's more recent anthology, The Poetry of Nursing: Poems and Commentaries of Leading Nurse-Poets, gives 15 nurse poets the space to present and to comment on three or four of their own poems, an unusual and engaging meta-analysis. An accomplished poet, Davis is also a talented essayist, whose recently published The Heart's Truth: Essays on the Art of Nursing encapsulates the relationship between clinical practice and writing:

. . . I find that when I'm not seeing patients, it's a struggle for me to write. It seems that for me, nursing and writing have become, over the years, inextricably bound. That intimate connection that links us, human to human, is essential both to my vocation and my avocation. (98)

Writers like Davis and Schaefer, Jeanne Bryner, Theodore Deppe, Veneta Masson, have published their work in distinguished literary journals, such as Minnesota Review, Prairie Schooner, Hudson Review, Poetry, The Sun, and Kenyon Review, as well as in their own books published by respected presses.

These nurse writers join an eclectic canon. Katherine Prescott Wormeley (1830-1908), an American nurse in the Civil War, was a highly respected literary translator, who turned works by Balzac, Daudet, and Dumas to English. Sarah Chauncey Woolsey (1835-1905), an American children’s author and editor, wrote under the pen name Susan Coolidge. Lillian D. Wald (1867-1940) was a community health activist and author of two memoirs, The House on Henry Street (1911) and Windows on Henry Street (1934). Ellen LaMotte (1873-1961) published several books, including travel and wartime nursing narratives. In addition, today nurse scholars publish their research in over 100 journals of nursing science and professional practice.

Florence Nightingale, whose collected works now runs to thirteen volumes in the edition published by the Canadian University of Guelph's Wilfrid Laurier University Press, put pen to paper in the service of a variety causes, not all of them related to health care. As Lytton Strachey observes in his profile of her in Eminent Victorians, Nightingale's dedication to spirituality led her to write a tract on the spiritual wellbeing of working-class artisans:

Then, suddenly, in the very midst of the ramifying generalities of her metaphysical disquisitions there is an unexpected turn, and the reader is plunged all at once into something particular, something personal, something impregnated with intense experienceaa virulent invective upon the position of women in the upper ranks of society. Forgetful alike of her high argument and of the artisans, [she] rails through a hundred pages of close print at the falsities of family life, the ineptitudes of marriage, the emptinesses of convention, in the spirit of an Ibsen or a Samuel Butler. Her fierce pen, shaking with intimate anger, depicts in biting sentences the fearful fate of an unmarried girl in a wealthy household. It is a cri du coeur . . .

The best of nursing writing shares this passion, a thirst for justice, an advocacy of vulnerable populations. Nightingale did not suffer fools gladly, and her view of the role of nurses went well beyond the ancillary, for as she wrote, "No man, not even a doctor, ever gives any other definition of what a nurse should be than this — ‘devoted and obedient.’ This definition would do just as well for a porter. It might even do for a horse. It would not do for a policeman."

Works Cited

Alcott, Louisa May. Hospital Sketches. Boston: J. Redpath, 1863.

Davis, Cortney. The Heart's Truth: Essays on the Art of Nursing. Kent, OH: Kent State University Press, 2009.

Davis, Cortney, and Judy Schaefer, eds. Between the Heartbeats: Poetry and Prose by Nurses. Iowa City: University of Iowa Press, 1995.

—. Intensive Care: More Poetry and Prose by Nurses. Iowa City: University of Iowa Press, 2003.

Edmonds, S. Emma E. Nurse and Spy in the Union Army. Hartford, CT: W. S. Williams & Co., 1865.

Nightingale, Florence. Notes on Nursing: What Nursing Is, What Nursing is Not. London: Duckworth, 1859.

Schaefer, Judy, ed. The Poetry of Nursing: Poems and Commentaries of Leading Nurse-Poets. Kent, OH: Kent State University Press, 2006.

Schultz, Jane E. "The Inhospitable Hospital: Gender and Professionalism in Civil War Medicine." Signs, 17.2 (Winter, 1992), pp. 363-392.

Showalter, Elaine. "Florence Nightingale." Sandra M. Gilbert and Susan Gubar. The Norton Anthology of Literature by Women: The Traditions in English. New York: W.W. Norton, 1996. 836-837.

Strachey, Lytton. Eminent Victorians. New York: Putnam, 1918. Retrieved from http://www.bartleby.com/189/204.html

Wald, Lillian D. The House on Henry Street. New York: Holt, 1915.

—. Windows on Henry Street. Boston: Little, Brown, 1934.

Rescuing Sympathy

November 30, 2009 at 2:24 pm

Female doctor talks to female patient

Commentary by Jack Coulehan, M.D. M.P.H., Professor Emeritus of Preventive Medicine and Fellow, Center for Medical Humanities and Bioethics, Stony Brook University, New York

Many authors who write about empathy in medicine are careful to draw a bright line between sympathy and empathy. For example, Hojat in his excellent survey of research on Empathy in Patient Care, considers the two concepts as almost dichotomous, albeit with a small area of overlap. (1) In this categorization, empathy is a cognitive attribute that allows us to understand the selfhood of another person, or, as Hojat puts it, "the kind and quality of the patient's experiences." (1, p. 12) Alternatively, sympathy is an affective or emotional attribute that plays a somewhat ambiguous, if not detrimental, role in medical practice. The bottom line message is that experiencing too much sympathy for patients distorts the clinician's medical judgment, thus harming the patient; and at the same time causes the clinician to "absorb" too much suffering, thus leading to professional burn-out. Interestingly, these authors seem unconcerned about the question of too little sympathy. Presumably, they agree that clinicians ought to care for their patients, i.e. feel-for or have compassion. Therefore, they must believe that a modest amount of sympathy is essential for patient care, but they never discuss how to develop or maintain sympathy. Their main concern is that it not be confused with empathy.

Empathy

Empathy is a hard nut to crack because it challenges the conventional medical opinion that thinking is thinking and feeling is feeling and never the twain shall meet. Empathy is a process by which we try to understand other people's experience: how they feel, where they are coming from. To the extent that we accomplish this, we are considered empathic and should score highly on a reliable test of this quality. Thus, empathy is a cognitive process, but the content (the known) includes emotions. To "know" emotions we have to feel them. Jodi Halpern uses the term resonance emotions to describe these feelings generated in the clinician as she practices empathy. (2) She writes, "The special professional skill of clinical empathy is distinguished by the use of this subjective, experiential input for specific, cognitive aims. Empathy has as its goal imagining how it feels to be in another person’s situation." (3)

I speak of "practicing," rather than "having," empathy because I want to focus on the professional skill component, rather than the natural endowment (i.e. more or less hardwired) component. In Howard Spiro's famous essay "What is empathy and can it be taught?" he answers the second question with a qualified "yes." He writes that "a better question might be, 'Can we recover the empathy we once had?'" (4) Arguing that the process of medical education tends to diminish our openness to others' feelings and experience, Spiro believes that enhancing clinical empathy is more of a restoration project, rather than a pedagogical one. Perhaps he overstates the case, but it is clear that medical education tends to narrowly focus students' attention on patients-as-objects, thus down-regulating their receptors for experiencing patients-as-subjects. It can be argued that concepts like detachment, detached concern, and clinical distance describe an unfortunate situation that needs to be remedied, rather than a professional ideal.

Sympathy

What does this have to do with sympathy? I take sympathy to mean an emotional state in which we desire to "feel another person's emotions better" (Hojat's language, 1, p. 11). In clinical medicine this translates to "connect with" another person's suffering. In other words, to have sympathy for a patient is to have genuine care or compassion for that patient. Perhaps it is useful to warn students against submerging themselves in excessive sympathy, but I doubt it. After many years of observing medical students, residents, and senior physicians in practice, I don't believe that over-identification with patients is much of a problem. Some doctors seem not to connect with their patients as persons. In other words, patients don't engage much of a sympathetic response. I suspect these non-sympathetic doctors would also score poorly if they were subjected to an accurate test of clinical empathy. another group of doctors seem genuinely to care for their patients. They have a great deal of sympathy for patients. However, these clinicians appear to have the emotional resilience that allows them to experience sympathetic feelings, but also maintain a clinical perspective. I suspect these sympathizers would also score highly if they were subjected to an accurate test of clinical empathy.

Empathy and Sympathy

This brings me back to the original distinction between empathy and sympathy. I agree that a distinction exists, but I submit that the relationship is more complicated than most writers portray it. In many ways sympathy and empathy parallel one another: sympathetic clinicians tend to work harder at being empathic; unsympathetic doctors tend not to devote much effort to empathy. At the same time, empathy is clearly a cognitive process by which we may approximate an understanding of another's situation and feelings, while sympathy is an emotional state of affirming the other person while experiencing something of his or her suffering.

Concluding Thoughts

Let me conclude with the following observations:
1. Empathy precedes sympathy. I can't sympathize with a person unless I have some understanding of how he or she feels.
2. Sympathy feeds empathy. My feeling-for a person's suffering makes me more likely to engage that person empathically.
3. Clinicians are more likely to be compromised by having insufficient sympathy than by having excessive sympathy.
4. My use of the term "sympathy" may be somewhat at variance with the way Hojat and others define it. However, I believe that, insofar as the versions are different, my version corresponds better with common usage, while their version, in which sympathy is considered egoistic as opposed to altruistic (1), is somewhat confusing and perhaps a straw man.

References
1. Hojat M. Empathy in Patient Care. New York, Springer, 2009, pp. 10-15
2. Halpern J. Empathy: Using resonance emotions in the service of curiosity. In: Spiro H et al (Eds.) Empathy and the Practice of Medicine, New Haven, Yale University Press, 1992, pp. 160-73.
3. Halpern J. What is clinical empathy? J Gen Intern Med. 2003; 18: 670-674
4. Spiro H. What is empathy and can it be taught? In: Spiro H et al (Eds.) Empathy and the Practice of Medicine, New Haven, Yale University Press, 1992

 

Creating And Maintaining Participant Interest In The Medical Humanities

October 28, 2009 at 3:39 pm

Everest region: Living in harmony with nature. Photograph

Commentary by P. Ravi Shankar, M.D., Department of Medical Education, KIST Medical College, Imadol, Lalitpur, Nepal

In previous blog articles I looked at medical humanities teaching in Nepal, explored the link between trekking and the medical humanities in a Nepalese context, and discussed the benefits and disadvantages of English as the language of medical humanities teaching. In this article I will share my experiences of creating and maintaining interest in the medical humanities (MH) among student and faculty participants in two Nepalese medical schools.

The voluntary module at Pokhara

At the Manipal College of Medical Sciences (MCOMS), Pokhara, Nepal a voluntary module was conducted for interested students and faculty members. (1, 2) Students from the third semester (basic sciences) and the fifth and sixth semester (clinical sciences) participated. Interested faculty members also joined the module.

Interest about the module was created through interactions at individual and group level with students and through posters and notices put up on the notice boards and prominent places on campus. (3) Students were invited to 'try out' the module for one or two sessions. If they found the module interesting they could continue- otherwise they could opt out.

Sessions for basic science students at Pokhara

The sessions for the third semester students were conducted during the afternoon lunch break. Each session was of 30 minutes duration. The number of students was small, not more than eight and they were highly motivated. Due to various problems sometimes students could not attend the sessions. I decided to be flexible over attendance. The module used small group, activity based learning strategies. Literature and art excerpts, case scenarios and role plays were used to explore the subject. The students were particularly interested in using role plays to explore various scenarios.

Creating a sense of belonging among the group of students was important. On occasions I distributed 'Thank You' notes to the students which had a photograph of a particular location in Nepal, very scenic country. Periodic assessments of the participants were carried out by the facilitator and constructive suggestions for improvement provided where required. We had a get together over tea and snacks at the end of the module. Group photographs were taken and the students were given a letter signed by the Dean of the institution and myself stating the various skills they had acquired during the module, as well as a certificate of module completion. The specific skills acquired were an appreciation of the patient perspective on sickness and health, awareness of the effect of sickness of a loved one on the caregiver, ability to break bad news gently and humanely, understanding of the patient-doctor relationship and recent developments on this topic, knowledge of the process of obtaining informed consent from the patient/patient's legal representative, and knowledge of the complex issues underlying abortion among others. Students were informed that they and their seniors on the clinical side were the first MH students in Nepal and their inputs and feedback would be useful for conducting future modules.

Sessions for clinical students at Pokhara

The sessions for the fifth and sixth semester students were held two days a week after 7.30 pm. Extra sessions were conducted when required. My colleague, Mr. P. Subish was kind enough to offer the meeting hall of the Drug Information Center (DIC) for holding the sessions. The place was comfortable and quiet and offered a relaxed and protected environment for the participants. The participants were interested in using role plays to explore issues in MH. They were also interested in using debates to explore controversial topics. The inputs and knowledge of the faculty participants was useful. Tea was served during the sessions. The discussions were free and frank and the teacher-student relationship was friendly. With the passage of time, the sessions became an intellectually stimulating get together of friends and colleagues. We had fun while learning!

'Thank you' notes and regular constructive feedback were provided to the participants. The participants also assessed the facilitator periodically. The sessions were conducted using a small group format. All the participants were staying on campus or nearby and the sessions could go on till late at night (around 10 pm). Pokhara is a small city and shuts down early except at the tourist hub of Lakeside. Though the module was not included in the formal curriculum and had no marks allotted to it in the examinations, the participants were beginning to understand the importance of the subject for their future practice.

Students who participated had an understanding of what sickness meant to the sick person and his/her family. They were able to consider sickness in the context of social, economic, cultural and family background of the sick person. In the hospital they witnessed the process of obtaining consent for various procedures and as they had already designed an informed consent form and discussed various aspects of the process of obtaining informed consent they were better able to understand and appreciate the importance of the procedure. During their Psychiatry posting they were more comfortable dealing with mentally ill persons and obtaining a psychiatric history. They had developed a historical background regarding improvements in the management of the mentally ill in Western countries and strongly felt the management of the mentally ill in health institutions and in Nepalese society as a whole should improve.

In Nepal for a long time abortion was illegal except in certain circumstances. Recently abortion has been legalized and women occasionally visit the Gynecology OPD at Manipal Teaching Hospital seeking abortion. Students who had taken the module were better able to understand various issues underlying abortion and the far reaching psychological effects it can have on the women and their families. Following the module students were more comfortable discussing issues of human sexuality. Nepal is a conservative society and these issues are not generally discussed; there is a great deal of secrecy and embarrassment associated with sexuality. Students who completed the module were able to discuss these aspects during history taking with patients and were able to put the patient at ease about these 'sensitive' topics.

Module for faculty members at KISTMC

KIST Medical College (KISTMC) is a new medical school in Lalitpur district of Kathmandu valley, Nepal. The management was interested in further developing humanistic qualities among doctors and faculty members of the institution. An Internal Medicine specialist, Dr. Piryani, was interested in MH and joined me as a co-facilitator. . The experience of the MCOMS module was useful in developing a module. The module was conducted during Sunday afternoons. (Sunday is a working day in Nepal where Saturday is the weekly day off.) The sessions were held in the 'Doctor's room'. We used PowerPoint slides to link together various activities and different aspects of the presentation.

I was apprehensive about dealing with faculty participants. The group was very diverse with basic science faculty, physicians, surgeons, dentists and medical and dental officers. Initially the module was conducted in a similar fashion to the pioneering one at MCOMS. However, the faculty members were not comfortable with role plays and felt it was childish. They were uncomfortable openly discussing issues of human sexuality. (4) They wanted the sessions to more closely reflect various issues and problems they encounter in practice. Regular participant feedback was obtained at the end of each session and informal feedback through interaction with participants.

Based on their feedback we decided to change the nature of the sessions. The number of role plays was reduced and group work and presentations were used to explore MH. During the session on 'Dealing with the HIV-positive patient' an example of group work given was 'Should HIV-testing be made mandatory before surgery in KIST Medical College? Should other patients in the ward be told that a particular patient is HIV-positive? Should commercial sex workers be registered and HIV testing be made mandatory for Commercial Sex Workers?'

KIST Medical College at the time had just started hospital operations and we wanted to obtain guidelines and standard operating procedures for the hospital also. Certain protocols linked to topics covered during the module were developed for further discussion. The group work and the activities were designed keeping in mind that participants were clinicians and faculty members. Another activity was as follows: 'An HIV-positive patient has been admitted in KIST Medical College. A batch of first year students has come to your unit for their weekly clinical posting. Chalk out a plan of action regarding how you will use the patient to teach students about dealing with the HIV-positive'. The presentations were about various procedures and mnemonics developed for 'Breaking bad news' and their applicability in Nepal, the effect of modern psychiatric medicines on the management of the mentally ill, and the effect of the prolonged conflict in Nepal on access to health facilities among others. Presentations were on medical humanities topics of importance in daily practice.

The literature excerpts were felt to be difficult by the participants and were discontinued. Each session concluded with a summing up by the facilitators regarding why the particular topic was important to practicing clinicians and medical educators.

Module for students at KISTMC

The author gave a presentation about MH to various faculty members (especially new members) and the college management. A case was made for teaching MH to medical students. The management was supportive and a MH module was started for the undergraduate MBBS students of the institution in February 2009. The module was planned using the experience gained at MCOMS and at KISTMC. Valuable inputs were offered by international experts like Dr. Johanna Shapiro and Dr. Huw Morgan. Dr. Morgan was a cofacilitator for certain sessions.

The module is held every Wednesday from 8 am to 9.30 am. A big room at the top floor of the hospital is used for the sessions. The room gives us the flexibility to arrange seating according to our requirements. Mikes and speakers and a central area for conducting role plays are present. Flip charts and the LCD projector are used. The students are divided into various groups. Considering previous feedback literature excerpts are not used. To explore MH, paintings-which do not have the cultural and linguistic barriers associated with literature-are used, as well as group work, case scenarios, and debates.

The module is activity-based and all 75 first year students attend. Considering the large student number and the need to develop new facilitators for this and future modules, six clinical and basic science faculty members were selected as cofacilitators. Various innovations have been carried out during the module to maintain participant interest. Music I feel is a powerful means for exploring MH so songs and music are part of the session these days. We have devised an activity where the student group sign a song or recite a poem about a scene depicted in a painting. The facilitators often join in! Most sessions have an 'Open Space' (Khula Manch in Nepali) were the participants recite poems and sing songs on various topics.

Thus I have used a variety of approaches to maintain interest in Medical Humanities among both student and faculty participants. It has been a challenge to maintain interest in a subject which is not a formal part of the curriculum and which is not assessed. However, I have relished taking up the challenge!

References:
1. Shankar PR. A voluntary Medical Humanities module at the Manipal College of Medical Sciences, Pokhara, Nepal. Family Medicine 2008; 40:468-70.

2. Shankar PR. A Voluntary Medical Humanities Module in a Medical College in Western Nepal: Participant feedback. Teaching and Learning in Medicine. 2009;21:248-53.

3. Shankar PR. Running a voluntary module - Personal experiences. Journal of Medical Sciences Research. 2007;2:55-58.

4. Shankar PR. Design the shoe according to the foot! The Clinical Teacher 2009; 6:67-8.

Disease Causality

October 12, 2009 at 9:55 am

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

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

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

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

Causation

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).

 

Dr. Fleischmann Draws Dr. Munk In Terezin

September 28, 2009 at 10:21 am

Portrait of Dr. Erich Munk, by Dr. Karel Fleischmann. Collection of the Art Museum at Yad Vashem.

Commentary by Michael Nevins, M.D., author of Jewish Medicine: What it is and Why it Matters and A Tale of Two "Villages": Vineland and Skillman, NJ. This commentary written in conjunction with an exhibit at New York University School of Medicine, Sept. 24-Oct.19: Art and Medicine in Terezin.

All of us felt a sense of sliding helplessness, again and again, day after day, night after night, you descended toward the abyss whose bottom was unfathomable….you felt only the downward movement, the fear, what next?

These chilling words, reminiscent of an earlier Prague resident Franz Kafka, were written in April, 1942 by Bohemian dermatologist Karel Fleischmann. With the Nazi takeover of Czechoslovakia in 1939 the situation for Jews had deteriorated and anti-Semitic racial laws restricted the doctor's ability to practice. Now at age forty-five, Dr. Fleischmann (b. 1897) awaited deportation to Terezin, the recently established ghetto town some forty miles to the north.

The morning of our deportation was pitilessly cold. The clouds as black as ink, the rising sun blood red in the background…darkness on earth, darkness in our souls…a nightmare. We arrived in Terezin in the evening. Really, you did not arrive, you were consigned. Someone managed for us for we no longer were we - we had become an object, a number, a ground substance, a kneaded mix of humans….Tired to the bones, sick, longing for quiet and sleep, we came into the cellars and dark holes of the barrack…still the mass was mixed, kicked and reduced to nothing, dirtied, put on the floor, kneaded and rolled till we became a formless porridge, a heap of rubbish….poisoned with the taste of the stable.

Dr. Fleischmann had been advised that upon arrival in Terezin he should look up the head of the ghetto's Health Department Dr. Erich Munk, but making contact was difficult. Known for his scrupulous integrity and organizational ability, the thirty-eight year old radiologist Munk (b. 1904) had been selected by Zionist leaders to direct what would become a massive medical apparatus.

Whereas Karel Fleischmann was prolific with more than a thousand of his diary notes, poems and art work surviving the war, only a few fragments of Dr. Munk's words remain. The following probably written during his first year at Terezin describes his first unpleasant impressions:

We had not yet freed ourselves from the needs of comfort, social norms, social stratas, prejudices…We had not yet realized that we have been set apart for an unknown length of time into an uncertain future. The impressions are as damp as the weather had been. Muddy like the mood of us all. Was I desperate? No. I was only deeply touched. I needed two nights and two days to overcome my deep depression, to be able to overcome my own self. I was unable to concentrate my thoughts on work….It was at noon of the third day that I suddenly succeeded in breaking through and submerged myself straight into work. Work saved me…ever since then I haven't stopped working.

As they endured their personal metamorphoses, Drs.Fleischmann and Munk learned a crucial survival technique - they could help themselves best by helping others.

Terezin

In 1780 Emperor Franz Josef, the emperor of Austria, built a garrison town in Bohemia which he named Theresienstadt - the city of Theresa, after his mother Queen Maria Theresa. After the formation of Czechoslovakia in 1918 the town was called in Czech Terezin. Then with German occupation during World War II, again it was officially designated as Theresienstadt. In later years both names were used depending upon the perspective of the speaker or writer. English language references tend to prefer the shorter Czech version which is used in this essay.

The Terezin ghetto was euphemistically described by the Nazis as "a city of refuge" or sometimes as "Hitler's gift to the Jews." In truth it was an assemblage camp where Jews were concentrated for varying periods until they were deported to "the East" - another euphemism for death camps, particularly Auschwitz-Birkenau. At first,Terezin was intended for Czech Jews but, before long others mainly from central Europe were shipped there - affluent, privileged, older people — rabbis, scientists, war veterans, musicians, artists — as many as 58,491 in September, 1942, all sharing space with rats, lice and fleas. Few of them suspected what lay ahead; many felt fortunate to be in this safe haven - some even paid for the privilege. Famously, in June, 1944, a delegation from the International Red Cross visited and couldn't, or wouldn't, appreciate the masquerade. They reported favorably to the world on conditions in what Nazi called the "model city" — in truth it was a Potemkin's Village - a place of false facades.

Terezin is often remembered as the concentration camp where guards turned a blind eye to cultural activities that were put on by the prisoners. Perhaps these were permitted for the purpose of propaganda or to temporarily appease the doomed inmates. There was a cabaret of sorts with a jazz band and performances of Verdi's Requiem and the children's opera Brundibar were sung by doomed choruses. Hundreds of lectures were given by famous scholars. Why did they do it? For some it may have been an escape into a semblance of normalcy; for others it represented a proud act of defiance - of being able to act human in the midst of depravity. Yet, few prisoners actually could attend the cultural events - most were too exhausted from work or were literally starving. Although technically Terezin was not a death camp, between November 1941 and May 1945 of nearly 160,000 people sent there, some 36,000 died of illness or starvation; the rest, about 88,000, were deported to extermination or work camps with only a few thousand of these surviving the ordeal. When the Russians liberated Terezin in May 1945, there were only about 30,000 survivors, more dead than alive. Within weeks many more died of a typhus epidemic. Of more than 12,000 children who passed through Terezin, only 325 survived.

Health Care in the Ghetto

Terezin's main hospital was located in a large barrack which had been built in 1780 to service military and civilian populations of about 7,000 people. It was ill-suited to care for the needs of 40 or 50,000 prisoners at a time and although solidly built with high vaulted wards and a huge attic, it was a hospital with no beds or bandages, no sterilizing equipment or instruments. Nevertheless, there was an abundance of knowledge and resourcefulness among the physicians. Dr. Munk's Health Department was able to collect some antiquated or broken equipment; glasses, orthopedic shoes and trusses were fitted and repaired, test tubes were manufactured and eventually a central pharmacy was stocked from medicines confiscated from new arrivals. Later this was supplemented by supplies brought in from the defunct Jewish hospitals and clinics of Europe. And so, gradually, a semblance of a functional hospital emerged.

Fleischmann's Portrait of Dr. Munk

Concerning his art work at Terezin, Dr. Fleischmann once wrote "I wanted to see the world differently and I could perceive it by making many hundreds of drawings." His subject matter frequently was mundane while at other times his art hauntingly depicted life in the ghetto. He was especially intrigued by the thought of drawing "the Munk." Here Fleischmann considers how he might develop the boss's portrait in geometrical terms according to Cezanne's cubist style:

I have repeatedly tried to draw him. It's not easy. ..I made a whole lot of drawings with little success. Dr. Munk says about himself that he does not have a photogenic face. Maybe he is right. [But] from a painter's point of view his face is not only most interesting, but his entire stature and movements which are like counterpoint in a subconscious composed symphony movement

I'll have to set up two, slightly upstanding but beautifully formed ears, above the ears a wreath of shining dark brown hair on the crown of the head something that once had been a bushy mane - without being impertinent…[now] a head which can be called bald.. It should not be [overemphasized] because this is a weak point of the otherwise brave Maccabee…The head, although small is proportional to the upper part of the body [and] establishes symmetry and almost a monumental impression. Yet the most remarkable are the eyes - dark, deep, seemingly with no transition from the pupils to the iris, shadowed by the sleeplessness of long nights, supported by some striking crossbeams under the sunken cheeks.

The center is marked by an aristocratic finely-cut nose betraying a strong spirit, a proud person; it is a brave man who is facing you. In the physically small head lies a mighty brain. This small head is not the way a puppet's head is put on. It is a real organic entity, an integral part of the rest of the body. It's also the hands that impress you so. They are big, much too big for the small face but not malformed or clumsy, quite the contrary. They are strong and betray knowledge and feeling for what they hold… These are the hands of an energetic, yet gently touching surgeon.

When you see the gaunt man with his inflamed eyelids and tired mouth, how relentlessly he works for the welfare of the Ghetto inmates… then you can't lag behind him. For me personally, Dr. Munk has become a real experience. Rarely have I met people of his stature. It will be an honor for us all to be able to say that commissioned by the Health Department of Ghetto Terezin we were permitted to work together with Dr. Munk.

(Karrel Fleischmann's drawing of Dr. Munk is in the collection of the Art Museum at Yad Vashem.)

Remembering Karel Fleischmann

Karel Fleischmann began one of his last poems with these words:

Nobody will hear my song
The world of my time ends behind these walls.

But the doctor was mistaken. After the war's end, more than a thousand of Fleischmann's drawings, written notes and poems were found and collected in archives in Czechoslovakia and Israel. They provided valuable testimony because as doctor-artist-writer he was able to see and record the entire panorama of suffering including hunger, fear, overcrowding, sickness and brutality. Gradually the world became aware of Karel Fleischmann's unique contribution but only a small amount of written material was translated into English. Then in 2004 an article appeared in the International Journal of Dermatology which described the doctor's life. The authors Leonard Hoenig of Florida and Tomas Spenser and Anita Tarsi of Israel concluded their review by noting that although Karel Fleischmann perished, his dream for a better future endured, declaring that it is up to each of us to help make it a reality.

This blog essay has been adapted from a longer paper.

References and Acknowledgements

Primary material that has been reproduced here in italics was extracted from unpublished documents found in files of the Theresienstadt Martyrs Remembrance Association, Beit Theresienstadt (BT) at Kibbutz Givat Haim-Ihud in Israel. These had been translated by others into English and, in turn, I have slightly edited or resequenced portions for the sake of coherence. If in the process, factual errors may have inadvertently occurred, they are my own responsibility. Lydia Shmolka of BT translated some documents into English from their Health, Altestenrat and Erich Munk files. Several of Dr. Fleischmann's journals and poems which depicted the doctor-writer-artist's prewar work were translated into English by Hana Houskova and reproduced an unpublished biography Rack of Time (BT Karel Fleischmann File No. 601.) Other useful sources were Vera Schiff's memoir Theresienstadt: The Town the Nazis Gave to the Jews (Toronto: Lugus, 1996) and Ruth Bondy's Jakob Edelstein. Elder of the Jews (New York: Grove Press, 1981.) The best English language biography of Dr. Fleischmann is the reminiscence Dr. Karel Fleischmann: The story of an artist and physician in Ghetto Terezin by Leonard J. Hoenig, MD, Tomas Spenser, FRCGP and Anita Tarsi of Beit Theresienstadt (International Journal of Dermatology 2004: 43. 129-135) and the accompanying Commentary by A. Bernard Ackerman, MD The Importance of Remembering Karel Fleischmann. I wish to acknowledge Oded Breda, the manager of Beit Theresienstadt, and historian Dr. Margalit Shlain for their constructive suggestions.