Literature, Arts and Medicine Blog

Commentary, art, and poetry by Eliette Markhbein, M.S., M.A. Founder, The Therapeutic Arts Program, Department of Rehabilitation Medicine, The Mount Sinai Medical Center, New York City

Drawing and writing came naturally to me while in rehabilitation after sustaining a traumatic brain injury and injuries to my spine, the result of being struck by a speeding car. They eased the physical, emotional and mental pain that were my constant companions and helped me find answers within.

Though complementary, the drawings and poems originated from different perspectives of the topics explored, emphasized other aspects and fulfilled separate quests. For example, "Braced-up" addresses in words issues of self concept and acceptance while the illustration was a life drawing, part of a series of sketches exploring femininity and searching for my own femininity after the accident. As a whole the series illustrate with candor and immediacy universal aspects of disability and rehabilitation, focusing on three periods: succumbing-hoping-coping, roughly a year each.

Succumbing

2005-2006 was the year of reckoning: reckoning with the extent of my cognitive impairments and contending with a person I did not know, could not count on and did not like-in other words the new me in all her splendor. Poems of that year (Writing; Alone; I so miss us) articulate the emotional distress and existential anguish I felt, the physical pain which became chronic, the depression that ensued and the unbearable loneliness, despair and isolation I experienced. I wrestled against drowning forces such as mental chaos, fatigue, lability and fear that was invisible to others.

WRITING Write, write, always write write when you have nothing to say write when you don't feel like it write anyway write like you breathe write nonsense but always write. Write to escape, to soar to feel free, to feel whole to feel peace, to feel love. Write to shut up pain the anguish, the fear the edge of the precipice the void, the despair. Write to learn another respiration to let the night cradle you to let your guts expode your thoughts liquefy to let FEAR exit.

ALONE Tears weigh the air you breathe. You hear yet do not look. Despair dims the light you cross you see yet do not reach. Crouched - a shadow shakes frightened alone.

I SO MISS US Where have the playfulness passionate discussion sense of strength and unity gone? We walk on glass shards afraid of each other’s and our own explosions locked away in pain silently crying alone grieving the light and graceful dancers we were not so long ago. Where have the laughs tumbling freedom gentle touch, teasing kisses as we cook gone? My body is a casket dark from fear tight from despair frigid from pain.

Your time is spent away from home away from me. Where have the rejoicing in Fall sun-filled mornings, the lazy afternoon readings the comforting arms gone? You are lost and so am I in the maze of my emotions in the dread of your weariness. Burnt out, listless we proceed to where? to what?

Hoping

2006-2007 was the year of discoveries: poems of that year (Displaced; Braced-up; Rays) express a shattered sense of self, the discovery and the need to prevail over panic attacks and other dirty tricks my injured brain played on me, and the unearthing of new sources of peace, strength and clarity.

DISPLACED Pink antique tiles bear my wieght night air from the window brushes my face. White linen drapes sweep the floor a tablecloth covers the table empty but for a glass bowl, reflecting moonshine. Leaning on the wall a tall mirror sends my image inwards, hurting. And I stand in the middle of the kitchen, recognizant of the place the light, the sounds yet not knowing where I am not knowing my way suspended, scared, displaced.

BRACED UP I have become a Frankenstein, patched up high and low and in between. From neck to feet braces, braces, braces holding me up reshaping me. Each set of heard shells, Velcro straps and metal hooks, cutting me tearing me. Yet, when I disrobe and shed my carcasses your eyes rest on my curves and you call be beautiful.

RAYS Rays of something better to come flash my conscience like headlights in the night. A heightened sense of expectation lightens my soul frees my spirit. Seeds of hope and wonder a sense of joy and purpose a trepidation for a new beginning flows vibrant in my veins. A new strength sourced in peace and acceptance rich in possibilities reveals itself slowly. What shape, what color will my new life be?

Coping

2007-2008 was the year of growth and fruition: poems of that year (Travel; Florida Summer; Attending) speak of acceptance and integration of my disability; group identification and advocacy; achieving a healthy balance between dependence, interdependence and independence; recapturing a sense of pleasure and playfulness; and reclaiming a social and professional place.

The last poem "Attending" talks about my caring for a locked-in syndrome patient as a Therapeutic Arts Practitioner, a metamorphosis from patient identity towards becoming a healer. As a final note I would like to emphasize that while the series of poems clearly indicate progress and resolution, the issues they describe do not disappear- with time, help and the application of compensatory techniques and strategies one becomes better at dealing with them.

TRAVEL Hello, your destination is Gainesville? Atlanta flight is delayed heavy weather down there. Connections will be missed layovers will be long fatigue and despair will settle in. The wheelchair waits at the counter, parked by my side let’s go before I explode in tears. Your hand clutches mine as we zip through the airport sobs build up and flood my face. Panic sets in, stomach, heart shoulders, down my legs Thirty second cycles of hell. You say people will think I am sad to leave you- I smile, I am. Three loops of 30 seconds already. I kiss your face lightly your lips softly you disappear behind security. Hi, I wear a brace need to be checked by a female officer. Yeah, yeah. Go through. I ring loud and clear. Take off your watch sure, it’s not the watch, it’s the brace.

Mam, do as you are told. No watch- I ring loud and clear Do you have any metal on you? Huh…a brace? Please remove it Can’t- why not? Ok… Step to the sidevoices criss in the walkie talkie "female officer to…" Now the wait bare feet exposed to incredulous suspicious looks I am not normal I am disabled I am not a security threat. Wheelchairs with gray haired ladies zoom by I am not gray haired. My attendant huffs and puffs impatience, disapproval annoyance, boredom. No curtains, no privacy I am frisked- humiliated I want to flee. I cry. And the sun shines and the breeze blows and the trees sway I will break away my spirit will heal I will feel whole again.

FLORIDA SUMMER Nickel size water drops percolate on the burning tar, evaporting at once. Steam rises fast volutes of pearly upward mist soaking the wind easing my skin curlng my hair. Lemony scent of magnolias infuse the heat tall grasses and leaves green and earthy smells lay thick to the ground Oh no! my flip flops float away go go little boats.

ATTENDING Mute? Not so, not by the farthest stretch of imagination. Your lips shape silent words. I hear them. They stretch and lift a smile: happy. They round, soft and gentle: kid. They pout and tighten: upset. Your eyes lovely and deep shape silent thoughts. I hear them. They reflect deep in their pool variant colors and tones telling me your surprise your sadness your resolve your hopes.

Your hands shape silent emotions I hear them. They hold each other close and tender listening to the book we read. They beat to the music light and free telling me your joy in the rhythm. I hear loud and clear the richness of your soul the sharpness of your mind the strength of your will. Your smile your thumbs up when I leave fill me with gratitude to share your life a moment.

Additional information about Eliette Markhbein and examples of her work can be found on an ABC-TV interview, and in the online journal, Hektoen: "Trauma on Canvas".

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.

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.

Commentary 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:

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:

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:

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.

Commentary by Erika Goldman, Editorial Director, Bellevue Literary Press

Our mission at Bellevue Literary Press is to publish books at the nexus of the arts and the sciencesawith a special focus on medicine. What counts for us is high-quality, authoritative writing, which might take the form of well-crafted history of medicine or science, or a novel where illness is a theme, though not necessarily a central one. Some of our authors are physicians, others, full-time writers.

The fun has been in exploring the variety of directions in which we can go while fulfilling our mission. While we focus on narrative nonfiction and literary fiction, we've also done photo essays, creative nonfiction, and a literary anthology. Our first books appeared in the spring of 2007, but we're lucky enough to have already received some major media coverage, including feature pieces in the New York Times and the Associated Press. Even as newspaper and magazine book review sections are shrinking or disappearing, our books are getting significant review attention.

We publish on average six non-fiction and two fiction titles a year. And we're the only trade book publisher (as opposed to academic or professional press) to be directly connected to a major medical centeraNew York University Langone Medical Center. We're proud to have published The Best of the Bellevue Literary Review, which we've been promoting to medical schools across the country. Danielle Ofri and her team have created an extensive companion study guide that makes it ideal for course adoption in medical humanities programs.

Our biggest nonfiction success to date has been The Lives They Left Behind: Suitcases from a State Hospital Attic, a history of American psychiatric institutionalization, which was written up in the New York Times, USA Today, Newsweek, Newsday and the Washington Post. After selling through several printings of the original hardcover, we reissued the book a year later as a paperback.

The work of fiction for which we've gotten the most attention to date is Tinkers by Paul Harding. Recently short-listed for the Center for Fiction's 2009 First Novel Prize, it explores the impact of illness on families and the bonds that link generations. Marilynne Robinson called it "truly remarkable," Publishers Weekly and Library Journal both gave it starred reviews, and it has an avid following among prominent independent booksellers who hand sell it to their customers.

At a time when mainstream publishers are cutting back their lists and staff, we're nicely positioned because we publish well-written, accessible books on subjects that people care about, including medicine and illness. Our material comes to us in a variety of waysavia literary agents or other industry contacts (including our own authors), our friends at the BLR, or "over the transom" (writers contacting us directly)aand our criteria for selection involve an assessment of the style and quality of the writing, how the finished book would serve our mission, and its marketability. We have a relatively small overhead so we don't have to sell tens of thousands of copies to make our business work. We want our books to be read and to carry their costs but as a nonprofit we're not subject to the same intense bottom line pressure that's made the blockbuster mentality dominant in the commercial publishing business.

So while this may be a particularly challenging economic environment for the book business, it's a fascinating moment to be a small press publisher. We're lucky enough to have attracted extraordinary authors, and our distributor, Consortium, has been wonderful, giving us the encouragement and support we need to flourish. If you think you may have a project for us, don't hesitate to be in touch.

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

Commentary by Allan Peterkin, MD., Associate Professor of Psychiatry and Family Medicine, University of Toronto; Head of The Program in Narrative and Healthcare Humanities; founding editor, ARS MEDICA: A Journal of Medicine, The Arts and Humanities

Most medical schools in North America have Bioethics divisions but not all have humanities programs. In the current climate of funding cutbacks and loss of investments for establishing new university Chairs, many academics assume that they will never have the resources to develop a new humanities program for their students in healthcare.A In this essay educators are encouraged to move forward all the same. By growing a grass-roots program and building a vibrant humanities community on their campus, they can have impact on the culture of learning at their institution and become a vital resource for their university. Administrators may then be persuaded to pay heed to the results and to offer administrative, institutional and financial support. Here are fifteen steps that were employed at the University of Toronto medical school and led to the granting of official status to the author's program and to pledges of funding from multiple sources.

1) Start with a hospital-based initiative and make sure colleagues and administrators know about your work. Hold monthly, inter-disciplinary lunchtime meetings with engaging speakers tackling "out of the box" subject matter. We've had sessions given by a family doctor studying to be a professional buffo clown, a toxicologist discussing poisons in opera, a nurse-dancer addressing the need for movement for children in hospital and how that might impact hospital design and a social worker offering `on the spot Atraining` for mindfulness in the hospital setting. Cast a broad net. Invite students and faculty from both health and arts disciplines. Advertise events in your university newspaper and hospital bulletin. Serve snacks (if you can!) Ask participants to fill out evaluations of the sessions . Keep these in orderAto demonstrate impact and for fine-tune your programming.

2) Choose a name for your program and be inclusive. We called our initiative "The Program in Narrative and Healthcare Humanities" in order to have appeal across disciplines. Some non-physician colleagues and other clinicians may object to (or feel excluded by) a "medical" humanities nomenclature.

3) Consider starting a newsletter, blog or print/online journal. We started "ARS Medica: A Journal of Medicine, The Arts and Humanities" 5 years ago with a small start-up fund from our very supportive Department Head and established a voluntary editorial board. The journal was/is a labor of love and has become the voice of our emerging discipline. Government arts grants have followed and the journal hit the radar of the university administration when we introduced a study guide with questions for reflection and study. The journal is now offered free of charge to all first year medical students in an innovative pilot research initiative.

4) Form partnerships with non-medical colleagues. Contact the heads of the English, History, Philosophy and Film Studies Departments and invite them and their colleagues/students to your monthly meetings. Find out who has a particular interest in health/disability/illness/narrative studies and ask them to present or to be a discussant.

5) Form partnerships with other healthcare humanities organizations nationally and internationally to obtain further guidance in establishing your local program. Join list-serves. (For example both the NYU Literature, Arts, and Medicine Database and the Literature and Medicine affinity group of the American Society of Bioethics and Humanities have been extremely helpful in assisting us to choose literary content for teaching students and for canvassing what's being done in the field.)

6) Form writing and research alliances with local, national and international colleagues. Publications and presentations are hard to ignore by funders and Deans.

7) Infuse your own department/faculty with humanities projects and seize opportunities to introduce arts-based content into existing curricula and lecture content. Ask to give a Grand Rounds on an art-based theme. Organize a student art exhibit in the lobby of your hospital or a yearly humanities essay contest. Introduce a poem or short text into morning rounds and link it to the subject matter or diagnosis at hand. Submit a workshop to a faculty development/ CME conference. (We offered three narrative-based medicine workshops to the Department of Family Medicine which were highly rated and subsequently increased the demand for training on reflection which incorporated writing and reading tasks). Make sure your offerings appear on your Departmental and Hospital websites.

8.) Form a list-serve and build a virtual humanities community for students and faculty. You'll discover that many of your colleagues (including those in non-clinical fields like research) are using arts-based teaching innovations but believe that they are working in complete isolation. They will be delighted to find like-minded educators and scholars at their own university and will also support future, more formal initiatives and funding requests. Build a website outlining the history of your program, listing affiliated faculty and summarizing presentations, initiatives and publications. Provide links to other healthcare humanities websites and organizations and ask to be listed on their websites as well. Post narratives and educational resources (like lists of films/texts useful in teaching). Become a "Go To" resource for colleagues in curriculum design and interprofessional learning.

9) As you build links with colleagues, prepare a list of possible electives which can be offered to students and residents. We have offered electives in guided reading on specific topics, creative writing and editing (working with Ars Medica editors) and have facilitated links with non-medical faculties. Make sure these electives meet the standards of your school and ensure that they are included on your website and in the syllabi of offerings for students and residents. Keep evaluations as evidence of your impact.

10) Hold evening events in the homes of your humanities faculty several times per year. A movie night for students and residents works well, as does the showing of episodes of specific TV series such as House or Nurse Jackie. Allow trainees to suggest content or to be a discussant.ASuch meetings build morale, foster community and help to advertise your other initiatives. Attendees may then volunteer to help you with specific tasks related to your program-building (publicity, research, writing letters of support etc.)

11) Organize an annual or bi-annual conference on a health humanities- based theme and hold it on campus. Last year we paired up with colleagues from the Department of English and offered a multi-disciplinary, international colloquium called Narrative Matters. One of our speakers was Dr Rita Charon, founder of the Narrative Medicine Program at Columbia University. Our Deputy Dean of the medical school was more than happy to introduce Dr Charon, but also took notice of the breadth of our initiative.

12) Offer to consult to your faculty on developing the potential links between the humanities and faculty wellbeing, professionalism, reflective capacity and interprofessionalism. Prepare/post resources of readings, films, writing exercises and websites which may be useful in teaching, personal learning or research. By offering our services, we were able to create 2 new courses on reflection and writing and to produce a humanities reader for first year medical students. We built the case that humanities-based initiatives needn't "steal" or compete with precious lecture time, but can be introduced organically at all levels of training from the pre-clinical years to Continuing Medical Education initiatives.

13) Hone your qualitative research skills and link with local, interested consultants. The impact of most humanities-based initiatives cannot be captured by standard bio-medical research protocols. Nonetheless your Dean will likely request proof for the relevance of your work, its impact on learning and for publications in peer-reviewed journals.

14) Act like an official program until you become one.AForm an official working group/program development committee. Keep minutes of your meetings. Prepare an annual report and then request to share it with/present it to your hospital Chief, Departmental Chair, Dean and other educational Deans at your faculty.

15) Choose your moment to request more official status (ie to be identified as a University program/resource rather than a local, hospital or specialty-based one) Be aware of trends in curriculum development within your Faculty (ie the introduction of a new portfolio for teaching, increasing demand for narrative-based interprofessionalAseminars.) as these may offer opportunities for enhancing the profile of your work. List affiliations/partnerships with other departments at your school to show that you have the support of key players on campus. Prepare a three year budget. Your start-up year should be at least 20% more than years two and three. Prepare a dream list for future development. (We hope to have a writer in residence and a fully endowed Chair at our university within 5 years). Explore all funding options including existing competitions for innovation in course design or inter-professional teaching. Your Dean may be more willing to match funds from your department, hospital or outside sources, rather than to fund your program in its entirety.

Readers of this blog are invited to share practical strategies of what has been successful (or less so) in their own settings. Let the dialogue begin!

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.

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).