Literature, Arts and Medicine Blog

Editor's Note: This is the third of four installments from guest blogger Dwai Banerjee, a doctoral candidate in NYU’s department of social anthropology. Images illustrated by Amy Potter, courtesy of Cansupport.

Part III

In a later visit with the homecare teams, I met Rajesh - a 29-year-old man who has been battling cancer since his teenage years. The walls of his room in a dense middle-class neighborhood were bare but for two pictures - one of a Hindu deity and another of his parents who had passed away in an accident when he was still young. Rajesh had contracted cancer while working in a chemical factory in his late teens. The cost of his treatment led him to lose the little property that his parents had left him when they had died. The relatives that he lived with now took him in, but refused to extend any form of empathy or care. The stigma of the diagnosis of 'cancer' along with fears of its communicability saw to his isolation in the small verandah of the house. Yet, Rajesh's will to live was strong; on his own, he would travel to the All India Institute for Medical Sciences (AIIMS) early in the morning, negotiate the intricacies of the bureaucratic processes and make himself available for treatment.

As it stands, effective public health insurance is by and large absent in the Indian health scenario. In its place, the only financial respite for the poor comes in the form of subsidized treatment at government facilities. The bureaucratic procedures involved in procuring these government grants are daunting at best; very few cancer patients are able to transact the opaque bureaucratic process within the time allowed by rapidly progressive malignancies. Fortunately in Rajesh's case, where kinship had failed, a local network of knowledge and care stepped in. Cansupport and a sympathetic AIIMS doctor collaborated together to procure both a part-time nurse to care for Rajesh, while also taking him through the process of applying for a set of government grants.

In my conversations with Rajesh, it became clear that the years battling both the disease and the public health system and spent him. Time and again, his upbeat demeanor would collapse; at the end of one of our conversations as I made to leave, he stated baldly that if the disease returned he would not fight it again. It had deprived him of years of income and left him at the mercy of a family that had not cared for him at his most vulnerable. He had become the errand boy of the locality, earning his room's monthly rent by doing chores for his family and neighbors. His resentment towards his family was something that he had been forced to learn to hide; working for them allowed him to transact the complicated business of 'living on' with the disease. Over the next few weeks, Cansupport would try and work with its funders to set Rajesh up with a food-cart, to gain him the monetary security and independence he needed. While the biology of the disease was now in remission, the collapse of the infectious life of cancer had spread outside the body, jeopardizing his will and ability to carry on.

Dwaipayan Banerjee is a doctoral candidate at the department of social anthropology at New York University. Prior to his doctoral candidacy at NYU, he graduated with an M.A. and an M.Phil in sociology from the Delhi School of Economics, India. He has recently completed ethnographic work concerning the experience of cancer, pain and end-of-life care in India. His research follows the circulations of these experiences across different registers - language, medicine, law and politics. His broader interests includes working at the intersection of philosophy and anthropology, as well producing and studying ethnographic film and media.

Editor’s Note: This is the second of four installments from guest blogger Dwai Banerjee, a doctoral candidate in NYU's department of social anthropology. Images illustrated by Amy Potter, courtesy of Cansupport.

Part II

However, at this point, Shambu and Rohini's story took a sharp turn. The palliative care team I was visiting with discovered that, partly because of not collectively acknowledging the extent of the disease, Shambu and Rohini had started visiting a new neighborhood private 'ayurvedic hospital.' This hospital claimed to be able to completely cure cancer, provided that the patients pay whatever was the breaking limit of their financial ability. Perfectly aware that it was not her place to recommend or dissuade a line of treatment, the counselor restrained her own opinions. As the family talked, it became clear that to avail this therapy, they were considering risking their son's future as well as their ability to remain in their home. Shambu had been the sole breadwinner in the family, and given the imminent possibility of his passing, such decisions could have catastrophic consequences. The counselor still remained non-committal on the viability of this promise of cure, but skillfully urged Shambu and his wife to talk and think through what they were doing.

Soon, as they talked about their options for the first time, Shambu and Rohini started complaining bitterly about the treatment they had received at this hospital. The self-purported physician had refused to come into contact with the patient, or even take a medical history. Instead, their conversation had revolved around the staff ascertaining what the family could afford. (The counselor was to later tell me that many such 'alternative' hospitals had sprung up around lower-income neighborhoods, and for the urban poor at the margins of an overcrowded public health system, these were unsurprisingly seductive lures.) Soon afterwards, Shambu began to narrate his own life, telling the story of how he had planned his own insurance policies based on an astrological prediction that he would contract cancer, but how that prediction had fallen short by two years and wrecked havoc with his plans.

To my surprise, I began to see how the counselor's decision to listen patiently had allowed the space for these narratives to develop, and how the family now began the slow process of coming to terms with the prognosis. This would certainly not be the last word on the matter, but the team's skilful handling of the sensitive ways in which illness knowledge circulates ensured two vital things. On the one hand, they were careful not to heavy-handedly tear the web of careful ruses that continued to bolster the family and the relations between them and the social worlds around them. But at the same time, they laid the groundwork so that these partial denials would not financially ruin the family in the near future. Thus, the team facilitated the process through which Shambu and Rohini could place the illness within a comprehensible narrative of their lives, while beginning to prepare for what was to come.

Dwaipayan Banerjee is a doctoral candidate at the department of social anthropology at New York University. Prior to his doctoral candidacy at NYU, he graduated with an M.A. and an M.Phil in sociology from the Delhi School of Economics, India. He has recently completed ethnographic work concerning the experience of cancer, pain and end-of-life care in India. His research follows the circulations of these experiences across different registers - language, medicine, law and politics. His broader interests includes working at the intersection of philosophy and anthropology, as well producing and studying ethnographic film and media.

Editor’s Note: This is the first of four installments from guest blogger Dwai Banerjee, a doctoral candidate in NYU’s department of social anthropology. Images illustrated by Amy Potter, courtesy of Cansupport.

Introduction

The contemporary landscape of healthcare in Delhi inspires very little confidence. The lack of public insurance, scarcity of resources and rising cost of care in the vast network of private hospitals has ensured that for much of the city's poor, the diagnosis of cancer comes without any hope of treatment. Even at the best public health institutions, waiting lines for chemotherapy extend for months, compounded by the fact that over 80% of patients present at incurable stages. In the four-part entry that follows, I show that palliative care -far beyond its commonplace association with comfort at the end of life - is an urgent, irreplaceable and imaginative intervention that seeks to both diagnose and treat the social costs of the disease amongst the urban poor in India. I show that in its understanding of the form of the worlds that both collapse around and emerge through the disease, palliative care is really the condition and prerequisite of therapy, rather than its failure.

The anecdotes here come from a year of ethnographic fieldwork following intensive care, public health and oncology in India. Specifically, I describe some of my experiences working with and studying Cansupport, a pioneering palliative care organization in Delhi that provides home-based psychological and physical support to lower-income advanced stage cancer patients.

Part I

One of the first things that came to light when exploring cancer care in India was that knowledge of the prognosis was an extremely convoluted matter. From my first days in working with home-care teams, I was told to never mention the word 'cancer': the understanding was that patients hardly ever 'know' that they have the disease. Needless to say, this came as quite a surprise. Later on, analyzing the intake forms of about 2000 patients while working as a consultant at India's largest public hospital, I realized that about 85% of cancer patients were indeed recorded as 'not aware' of either their diagnosis or their prognosis. Delving into the emergent literature on 'psycho-oncology' in India, I began to realize this was a well-recognized problem within the emergent discipline. But it took several weeks of ethnographic work in the homes and neighborhoods of patients before the meaning of "awareness" and "denial became clearer to me.

In one of the early days of the Delhi winter, I accompanied a team on a visit to the far eastern borders of the region. We were greeted by the patient's wife - Rohini - and taken inside a room with two beds. On one lay Shambu, a former life-insurance salesman who presented with an advanced stage of the disease. In a pattern that often repeated itself, once Shambu's initial physical discomfort was taken care of, the counselor turned her attention to the question of the family's 'awareness' of the diagnosis. It was during interactions such as these that I realized the stakes of 'knowledge' around cancer. First, in a public health system in which oncologists see over a hundred patients in the space of a few hours, the communication of a diagnosis and prognosis - often across barriers of class and language - is often a half-achieved ideal at best. Second, even if a sense of the diagnosis is communicated and therapies undertaken, I realized that beyond the space of the hospital, just the hint of the word 'cancer' has the powerful potential to ostracize the patient from social life. Landlords would evict cancer-marked families, neighbors would suspend social interaction, marriages in the family would be jeopardized, and cremators would refuse the body.

Shambu and Rohini's case captured this double elision. The counselor's tactful conversation with Rohini elicited that she had a hazy but more-or-less accurate picture of the bleak prognosis, but that Shambu himself had not been explicitly 'told'. A separate conversation with Shambu revealed that he too was not as much in the dark as Rohini imagined. In a situation that recurred almost inevitably, both partners had tried to keep each other in the dark, firm in their conviction that putting the diagnosis into words would collapse the world of their loved one. They each recognized not only the power of the diagnosis to inflict psychic harm on the self of the patient, but also the threat of being marginalized and isolated from their extended family, their neighborhood and their friends. The world they had built around cancer, a world they had lived in for almost two years, had no place for its acknowledgement in language. To label this complicated work of living together as living in ignorance or denial would do it a great disservice. The work of home-care that took shape recognized this and often pulled back from pushing the disease blindly onto the surface of words.

Dwaipayan Banerjee is a doctoral candidate at the department of social anthropology at New York University. Prior to his doctoral candidacy at NYU, he graduated with an M.A. and an M.Phil in sociology from the Delhi School of Economics, India. He has recently completed ethnographic work concerning the experience of cancer, pain and end-of-life care in India. His research follows the circulations of these experiences across different registers - language, medicine, law and politics. His broader interests includes working at the intersection of philosophy and anthropology, as well producing and studying ethnographic film and media.

As one might expect, much of medical training occurs in the inpatient setting. Teaching hospitals, brimming with an elaborate hierarchy of trainees and supervisors, offer a critical mass of patients and pathology. Typically these patients present with exceptionally complex histories and comorbidities enriching the substrate of the teaching environment. Counter-intuitively, most doctors do not work in inpatient settings. This is especially true for psychiatry wherein the great majority of practitioners work in the outpatient setting, practicing various forms of psychotherapy.

Unlike in other fields of medicine, residents in psychiatry experience virtually no outpatient psychiatry until their third year (PGY-3). Most psychiatry residents therefore spend a minimum of six years of training before they venture beyond the frontier of outpatient psychiatry, into a wilderness they will eventually call home. For many, this is the moment they have been waiting for since deciding to become a doctor: their first therapy session.

Angst is perhaps the most suitable name for the escalating feeling leading to that first 45-minute office visit. Beyond simple anxiety or worry, there are existential elements implicating one's life, career, and purpose in the world. Additionally, there is both hope and dread- hope that salvation will eventually come (the patient will get better), and dread that you will be unable to bring it. Unlike the inpatient setting, befit with teams of providers embedded in elaborate systems of care (however under-funded and uncoordinated), the outpatient office can be a shockingly lonely venue, a small island where you sit naked waiting to be eaten by a large animal.

From one perspective, there is not much difference between a typical 20-30 minute encounter or "therapy session" on an inpatient unit and a 45-minute office based session. Yet there is an irrational pressure put upon oneself to make the most of an outpatient visit and a simultaneous intense fear that 45 minutes will be way too long (never in the hospital does one have time to worry about running out of things to say). Undoubtedly connected to the well-intentioned (and yet grandiose) identity as healer, this pressure suggests you alone will be in charge of saving your patient's life. Adding to this self-conscious uncertainty is the loss of anonymity afforded to inpatient providers. No longer able to hide behind the tribal masks and dress of the hospital ward treatment team, one's nakedness is more viewable in the outpatient setting.

Most concerning is the realization that, unlike inpatients who often draw from a more familiar cast of acutely ill characters (the demented elderly woman who screams all night after a recent infection, the manic psychotic young man from another state off his meds, the chronically homeless schizophrenic with a recent decompensation…), outpatients can come from anywhere. Fresh off the inpatient unit, I remember once thinking in early July, "Who is this stranger?" I was sitting opposed to a fashionably-dressed middle-aged man on a single antidepressant discussing his upcoming trips for business and summer vacations. Several years since a recent major depressive episode and suicide attempt, it was as though we sat chatting, comfortable by a campfire, the specter of his disease far from our minds.

It wasn't until I returned to the hospital that I appreciated the outpatient setting for what it truly is. Amidst the reverse culture shock of a long call night in the emergency room, I found myself between three newly admitted and screaming patients; one in withdrawal begging for more benzos, another acutely manic and irritable, the third demanding discharge despite a near-lethal overdose just hours afore. I missed my verdant, tranquil island.

It was at this point that I could look back at the thick, threatening, overgrown paths I had traversed and appreciate the open air of my surroundings. It was a few weeks later until I realized who else had been through those woods, lived even deeper in the dark recesses of the forest.

Now sitting in my office I strategize with patients on how to maximize their island time. I wonder how to keep the campfire burning so that we may "talk" as long as possible. And most importantly I try to mentally prepare for the day when a patient must return to those deep dark woods and how I can best make that journey with them.

-Arthur Robinson Williams

Arthur Robinson Williams is a PGY-3 Resident in the Department of Psychiatry at New York University specializing in addiction psychiatry, ethics, and research. He earned his M.D. and a Master in Bioethics at the Perelman School of Medicine at the University of Pennsylvania and the Penn Center for Bioethics.

For those living in or near New York City, there are unusual opportunities to attend plays that bear directly on individual experiences of illness, altered bodily states, and the cultural and social context in which those alterations occur.

Still playing is Tony Kushner’s Angels in America at the Signature Theater Company."This play explores "the state of the nation"-the sexual, racial, religious, political and social issues confronting the country during the Reagan years, as the AIDS epidemic spreads. .. Characters in the play struggle to find meaning in a world apparently abandoned by God."
See annotation

Through December 19 is Harold Pinter’s A Kind of Alaska, together with The Collection at the Classic Stage Company. The play is partly based on Oliver Sacks’s book, Awakenings.

Recently closed: Wings, by Arthur Kopit: See annotation; Three Women, by Sylvia Plath: See annotation; Photograph 51, by Anna Ziegler (The race to understand the structure of DNA, with scientist Rosalind Franklin as a central character).

Posted by Felice Aull, Ph.D., M.A.

Commentary by Felice Aull, Ph.D, M.A., Editor, Literature, Arts, and Medicine Database. Now that summer is upon us, I hope you have access to a cool, restful place where you can burrow into a book and get lost in it. Here are some books I read during the past year or so that I found particularly absorbing, listed in no particular order. Perhaps some will appeal to you as well.

Novel, Await Your Reply, by Dan Chaon. A suspenseful, dark story of identity in which three parallel narratives eventually find each other. (Now available in paperback)

Nonfiction, Zeitoun, by Dave Eggers. A harrowing story, told simply and directly but with growing menace, of what happened to one Muslim American family during Hurricane Katrina in New Orleans. The hurricane was the least of their traumas. (Now available in paperback)

Novel, A Gate at the Stairs, by Lorrie Moore "Ms. Moore has written her most powerful book yet, a book that gives us an indelible portrait of a young woman coming of age in the Midwest in the year after 9/11 and her initiation into the adult world of loss and grief." Michiko Kakutani, New York Times book review. (Now available in paperback)

Novel, A Person of Interest, by Susan Choi. "…say[s] something about what it means to live in a society that is simultaneously tolerant and suspicious, inclusive and all too ready to punish its citizens for the crime of being their authentic selves . . . making us feel deeply for characters who are profoundly flawed. . . . beautifully written. Choi's precise, cadenced prose alternates between plain-spokenness and lyrical dazzle." Francine Prose, New York Times book review. (Available in paperback)

Short Story Collection by Jhumpa Lahiri, Unaccustomed Earth. "Most of Lahiri’s insightful writings concern the betwixt and between challenges associated with immigration and with generational shifts. This collection of engaging and beautifully written stories examines both challenges." Lois LaCivita Nixon, Literature, Arts, and Medicine Database. (Available in paperback)

Novel, Then Came the Evening, by Brian Hart. The author’s first novel is a story of people living harsh lives in the harshly beautiful landscape of Idaho. "Quietly exceptional". . . short review in the New Yorker.

Poetry: Unincorporated Persons in the Late Honda Dynasty, by Tony Hoagland. Hoagland is witty and observant as he focuses relentlessly on contemporary American culture.

Poetry: My Life As a Doll, by Elizabeth Kirschner. The speaker spins out "a narrative of embattled childhood" and its long-range effects.

Commentary by Maureen Rappaport MD, FCCFP, Assistant Professor of Medicine, St Mary’s Hospital Center, and McGill University, Montreal, Canada

I am trained as a family physician but one third of my practice is as a clinical supervisor and teacher of residents in a family medicine teaching unit. I am based at St. Mary’s Hospital, a small community hospital in the heart of urban Montreal. Our residents have to do a "research" project as part of their training. Like most of our clinicians, I am not a trained researcher but I have had extra training as an educator (McGill Scholar in Medical Education 2004). A research project was a requirement of that program and through the courses I took in the Department of Education I discovered academic researchers were exploring different theories of knowledge and research (Barone and Eisner, Clandinin and Connelly, Cole and Knowles, and Patton)): i.e. Qualitative Inquiry, Interdisciplinary Artistic Inquiry, and Reflexive Inquiry. I used these methods in my own research project and although I initially met with skepticism, in the end my project was well received.

Past resident projects at St. Mary’s Hospital were mostly literature reviews and chart audits and, though interesting, the topics tended to repeat themselves year after year. My experiences in the Scholar’s program gave me the idea to propose an "Interdisciplinary Art Project" stream to my colleagues. I was excited about this new development, other staff members became inspired to develop other projects, and best of all, the residents engaged wholeheartedly with this new project paradigm.

I developed the guidelines for the Interdisciplinary Art Project based on work done by Dr. Ruth Martin, at University of British Columbia Family Medicine, who was generous enough to send me her documents. (Draft guidelines for Interdisciplinary Art Resident Project,Version #7, September 2005).

Interdisciplinary Art Project Stream Guidelines

Goals:

To integrate an artistic activity that includes photography, painting, sculpture, music, poetry, drama, film, or creative writing in a project that contributes to the existing knowledge base of Family Medicine

1. To increase clinician self-understanding and/or understanding about the physician patient relationship
2. To produce an oral/visual/audio/performance presentation which consists of the work of art itself AND
3. To produce an abstract and a report written in a format similar to scientific research, however, you may write this report in the first person like a personal diary or field notes

Objectives:

1. Demonstrate an academic understanding of the integration of the chosen artistic discipline with the discipline of family medicine
2. To produce a scholarly work that attempts to understand, explain, and/or interpret a clinical question or enigma and to explain your motivation for choosing an artistic medium
3. To include a historical and contemporary overview citing past examples of interdisciplinary work
4. To explain how your project relates existing interdisciplinary knowledge or published literature
5. To outline the ethical considerations encountered. ( Physician artistic activity can lead to ethical conflicts between what is research, art, or journalism, or when artistic activity interfaces with clinical care)
6. To fully explain your methods ie. why, when and what materials/medium were used and if other participants were involved what consent process was used and did they have input in editing
7. To present your results (the work of art) and a summary of the written report on resident day
8. To have a full discussion about the impact and limitations of your project
9. To demonstrate how the process of completing an interdisciplinary art project resulted in your personal growth or increased understanding

Preliminary Project Excerpts for Research Day June 16, 2010

Four projects are in the Interdisciplinary Arts Project stream this year:

1. The Exploration of a Patient’s Experience with Injury, Illness and Healthcare in Montreal -A short documentary film (Dr. Isaac Berman)

2. Poetry Therapy (Dr. Anne-Marie Leblanc)

3. Narrative Medicine, A Reflection (Dr. Tara McCarty)

4. Life-casting Project of Pregnant Woman and Her Partner (Dr. Tim Lussier)

Below are excerpts of three projects in their preliminary form:

Poetry Therapy: Anne-Marie LeBlanc

"As [Arthur] Lerner [is reputed to have] said, ‘poetry has the potential to help you be your best possible self… it brings us back to our own humanity’. I think I could say this is exactly what poetry brings me: humanity."

Outline of Project

1. Intro
2. Development
   1. History of Poetry Therapy
   2. Poetry and humanity
      1. Presentation of poems
   3. Research Method
   4. Four beneficial effects
      1. "Finding the Words to Say It"
      2. "It Takes a Whole Doctor to Treat a Whole Patient"
      3. "Paying Witness to the Unfolding Occurence of Life Itself"
      4. "Becoming a Better Professional"
3. Conclusion

"The poem named ‘Une Femme Morte’ was written during my palliative care rotation."

Une femme. Morte.

Et moi qui entre

Devant elle

Un regard, en fait deux

L’un eteint et l’autre en peine

Deux coeurs

Qui ont aime… et cesseAd’aimer.

Trop difficile cette vie

La-haut ce sera plus calme…

Et la musique quiAla transporte

Je souffle sur son ame

Et reviens sur Terre

Lui ouvre les yeux…

Rien.

Que du vide. Que du vitreux

De l’ordinaire extraordinaire

Incroyablement effrayant.

Saisissant.

Le rideau derriere moi

Je le saisis. Un dernier regard

Trite, livide.

Je la laisse

Et je marche hors de moi.

Narrative Medicine, A Reflection: Tara McCarty

"This is a little piece I wrote in the call room last week after a particularly difficult night. Small reflections such as these are known as narrative medicine. AThe doctors, nurses and staff who care for the ill are exploding with stories of beauty, sadness, and unique information that they are privileged to know about their patients’ lives. Narrative medicine, as described by Rita Charon, internist and writer, is a way of practicing medicine that enables the physician to practice it with empathy, reflection, professionalism and trustworthiness. It can be conceived as a model for a new way to practice medicine, a way that perhaps is a form of reincarnation from the old."

It’s late in the evening and I’ve been paged by the attending who asked me to see Mr McDonald. He hadn’t been doing well and the attending wanted me to check on him and re evaluate his pain control later on tonight. Actually, I knew this patient from a couple months ago when I was on call- a sweet 91 year old man who still had all his mental capacities and a great photo of his nine grandchildren by his bedside. He came with pancreatic cancer and a CVA, and when I saw him, he was desatting and short of breath from a likely aspiration pneumonia. On top of that, he had gone into fast a fib at around 160, and at 4 am, alone on the eighth floor, I put him on a monitor and pushed some IV metoprolol until he slowed down.

Once my heart rate and his were both down to the double digits, he smiled at me, amused. "It’s Ok, my dear", he said, "You don’t have to look so worried anymore". When I left later that morning he was satting well, had a heart rate of 70-90 and he patted my hand gently when I left.

Tonight, I go in to check on him. Much has changed. He has had two more CVAs, and he is now Level 5 care, existing on that lovely trifecta of nasal prong O2, morphine and scopo. I walk into his room, introduce myself, explaining that we have met before. He is breathing at about six during the minute that I count but seems to be focusing on my eyes. I realize the sound that is coming from his throat is what we doctors so eloquently call "the death rattle". I am holding his hand and with my free one press the call bell to ask the nurse to phone his family, but once she answers, the only one left breathing in the room is me. Mr McDonald, the sweet man who only a couple months ago had told me to "stop being worried", had just died, here in front of me, his hand in mine.

In a haze, I did the usual, the exam needed to pronounce, the papers, the signatures, the call to the family, helped the nurses clean him up, take out the IVs, take out the foley, take off the EKG stickers. I left his peaceful body in his room, waiting for his family. But his spirit stayed with me for a while. I left his room and walked down the dark hall, Mr McDonald’s ghost floating beside me, calm. And so he walked beside me, holding my hand, all the way from 5 main to 5 south, and then he let me off at the elevators. I pushed the down button for me, and the up button for him. His elevator came first, and he waved softly and smiled as the doors closed, his eyes once again telling me that everything was OK.

Life Casting of a Pregnant Woman’s and Her Partner’s Hands

Resting on Her Belly: Timothy Lussier

Introduction: The bond between a family and the unborn fetus is not very well discussed in the medical profession as the pregnancy is quickly reduced to a checklist of symptoms and signs. Art can help to capture this relationship in a way that is informative and powerful for the observer whether it be a patient, passerby or the responsible physician. Objective: Use sculpture to help capture the bond between the mother, partner, and the unborn fetus. Design/Method: Research aspect-to explore what is known concerning the bond between the mother/family and the developing fetus; Creative arts aspect-life-casting project of a pregnant woman and her partner symbolically representing the connected union. This will be followed by a survey of observers to verify the art assists in the intended purpose. Results: 1) Written report 2) Sculpture 3) SurveyADiscussion: Art can be a transforming experience and has shaped minds and history through time. It is our way of expressing complex ideas or emotions and communicating this to others. The nine months of pregnancy is a powerful experience for the family not formally recognized by the mother’s interaction with the medical profession. A life-cast sculpture of this bond may help us to better understand this experience and promote this experience within the family.

The above excerpts are just tastes of what these projects hold. I can’t wait for research day, to hear my residents present these works to their peers and my colleagues, to see poetry, stories, and art next to evidence- based searches. Medical Humanities has taken yet another place in the Academy.

Note: Although the projects are in various stages of development the residents have generously agreed to share their work so far.

References

Barone, T.E. & Eisner, E. (1997). Arts-based educational research. In R.M. Jaegar (Ed), Complementary methods for research in education. (2^nd Ed.) (pp.73-116). Washington, D.C.: AERA.

Clandinin, D.J. & Connelly, F.M. (2000). Narrative inquiry: Experience and story in qualitative research. San Francisco: Jossey-Bass.

Coles, A. & Knowles, G.J. (2000). Researching teaching: Exploring teacher development through reflexive inquiry. Boston: Allyn and Bacon.

Lerner, Arthur. Cited by McARDLE, S. and BYRT, R., in Journal of Psychiatric & Mental Health Nursing. 8(6):517-524, December 2001. p. 521.

Patton, M.Q. (2002) Qualitative research and evaluation methods. Sage Publications: California

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

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

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

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

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

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.

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.