English Departments and Healthcare

May 5, 2010 at 12:05 pm

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.

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

January 15, 2010 at 5:56 pm

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

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

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

Breast Milk as Medicine

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

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

Cultures of Breastfeeding/Breastfeeding in Culture

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

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

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

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

Scientific Motherhood

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

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

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

Breast Milk as Virus

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

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

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

Choice, Breastfeeding, and Modern Motherhood

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

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

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

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

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

January 6, 2010 at 4:32 pm

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

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

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

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

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

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

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

Remember The Nurses

December 30, 2009 at 5:01 pm

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

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

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

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

Where Are the Nurse Writers?

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

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

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

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

Nursing Writing

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

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

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

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

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

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

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

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

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

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

Works Cited

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

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

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

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

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

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

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

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

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

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

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

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

Rescuing Sympathy

November 30, 2009 at 2:24 pm

Female doctor talks to female patient

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

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

Empathy

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

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

Sympathy

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

Empathy and Sympathy

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

Concluding Thoughts

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

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

 

Disease Causality

October 12, 2009 at 9:55 am

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

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

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

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

Causation

Causation is one of those fecund topics whose enormous importance seems to surpass disciplines. A favored subject of antiquity, it remained central to Thomas Aquinas, Maimonides, and many of the other medieval scholars, to the early modern greats like David Hume and Immanuel Kant, and remains a critical subject in contemporary philosophy of science. Kant, whose epistemology is in my view often shamefully relegated to the background of his moral philosophy, was convinced that causation is a category of understanding, such that we cannot make sense of the phenomenal world without the concept.

But not only philosophers treat of the importance of causation, especially in context of medicine and illness. Medical anthropologists, for example, have long since pointed out that comprehending how a given community understands disease causality provides critical insight into the meaning of illness, suffering, life, and death. Anne Fadiman's well-used book, The Spirit Catches You and You Fall Down [1], is a nice instrument for teaching this point, as it seems inescapable that greater understanding (if not acceptance) of the Lee family's beliefs about Lia's illness experience would have greatly improved the family's medical experience.

As a self-identifying public health ethicist, my particular focus right now in thinking about disease causality is in the context of stigma. The history of stigma in context of illness can, to my mind, be traced back virtually as far as one wishes in Western civilization. (I believe it is reasonably prevalent in non-Western cultures as well, though I admit to a shameful level of ignorance on the specifics here). The reasons why stigma is so common in illness scenarios are multi-faceted, complex, and in my view have powerful explanatory capacity in conceptualizing health, illness, and disability. Fortunately for the able readers, as I have some work in review on the subject, I shall not be discussing it here (though some general thoughts on the subject are available on Medical Humanities Blog.

Disease Causality and Stigma: The Case of Fatness

What I want to suggest here are the connections between a particular notion of disease causality and stigma. One of the most obvious examples is the relationship between fatness and illness. As Gard and Wright [2] painstakingly documented in their fabulous 2005 book, the connections between fatness and disease are typically taken to be virtually certain among both lay and professional communities. And what are the consequences? That is, what results if we assert that type II diabetes, coronary artery disease, and cardiovascular disease, among others, are caused by fatness?

Of course, responding to the question of "what causes diabetes" by answering "fatness" is really a set of additional questions masquerading as an answer. Many of these questions turn on the differences between causes and risk factors, but to approach the issue of stigma, one must ask what causes fatness? (Naturally, to even speak of singular causes of intricate, nonlinear systems like disease in populations is absurdly oversimplified; one of the problems with causal attributions of illness in both lay and professional discourse is our general reduction of these complex systems to single, discrete variables. This is of course a hallmark of the Western scientific method, and the history of how we came to do so is, I think, quite important. But that is another post altogether.)

Life-style Model of Disease

In any case, what causes fatness? The usual answer turns on some fairly innocuous-sounding mishmash of genetics and environment, but the so-called model of disease causality here is often referred to as the "lifestyle" model. And lifestyle-type thinking is, particularly in American culture, deeply ingrained with notions of choice. We choose whether to pursue this lifestyle or that one; and so, in a very real sense, we choose whether to be fat. If fatness causes illness, it follows that we choose whether to be sick (with diabetes, coronary artery disease, etc.). This is in part why breathless reports of genetic linkages with fatness incite so much controversy - one of the perceived implications of such linkages is that individuals are not responsible for their fatness.

Of course, as I have noted on Medical Humanities Blog (see "On the Genetics of Jewishness"" and "On Genes & Diabetes Disparities", our discourses of genetic causation are problematic in a great number of ways, not least of which is the notion that "genes" actually cause anything at all in a linear sense. Genes do have causal effects, of course, but those causal effects are only produced through a complex system in which social, economic, cultural, and environmental factors profoundly shape expression. As Jeremy Freese has noted, the idea that the causality of an illness can be divvied up into x% - genes and 1-x% - environment is deeply mistaken [3]. Thus mere genetic linkages themselves are, from a causal perspective, not very interesting separate and apart from the inordinately complex systems through which they express (or do not).

Critique

One of the most compelling criticisms of the lifestyle model of disease is not that it is false; but rather, it is incomplete inasmuch as it pays no attention to the ways in which social and economic conditions substantially determine one's lifestyle choices. Even if we were to grant the exceedingly dubious proposition that fatness causes diabetes, drilling the causation down to individual lifestyle choices ignores, in my and many others' views, the robust evidence that lifestyles are primarily the product of social and economic conditions (the social determinants of health).

And of course, our model of disease causality is frequently embodied in how we regulate behaviors thought to cause illness. If one sees society as what Robert Jay Lifton termed a "biocracy" [4] as prevailed in the early 20th century in both Europe and the U.S., then the solution to the inherited "degenerate" behavior that produced diseases like insanity, mental retardation, and syphilis was to enact laws which precluded such inheritance. Alternatively, one could also support laws that precluded the "amalgamation" of "racial stocks" in which such degeneracy proliferated.

Similarly, if the cause of diabetes and CAD is perceived to be fatness, and the causes of fatness are unhealthy lifestyles, the perceived public health solution is to regulate such lifestyles, by, for example, strictly regulating the food available in school cafeterias, or requiring restaurants to print calorie information on their menus and web sites. In contrast, if the cause of fatness is perceived to be social and economic conditions, policy solutions would seem to fall much closer to ameliorating the conditions which seem to promote unhealthy lifestyles. (I hasten to remind readers that I am quite skeptical of the causal links between fatness and illness, but I assumed the validity of the attribution to take the point further).

In any case, disease causality is an important, and, in my view, understudied concept in the medical humanities, one that ties in quite deeply to notions of stigma, disability, and moral culpability for illness.

References
1. Anne Fadiman. The Spirit Catches You and You Fall Down (New York: Farrar, Straus & Giroux, 1997).
2. Michael Gard and Jan Wright. The Obesity Epidemic: Science, Morality, and Ideology (New York: Routledge, 2005).
3. Jeremy Freese. "The Analysis of Variance and the Social Complexities of Genetic Causation," International Journal of Epidemiology 35, no. 3 (2004): 534-36.
4. Robert Jay Lifton. The Nazi Doctors: Medical Killing and the Psychology of Genocide (New York: Basic Books, 2000).

 

Is Medical Uncertainty Necessary?

August 31, 2009 at 9:40 am

Artist: Neil Leslie

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

Medical uncertainty is all around us

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

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

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

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

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

Uncertainty and temperament

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

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

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

Comfort with uncertainty drives specialty choice

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

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

Uncertainty invites [other] answers

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

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

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

Your tests show

the numbers 73, 90, 119 and 2.5,

the letter A,

the color yellow,

a straight line interrupted by a repeating pattern

of steeples and languid waves

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

Normal’s a shell game you seldom win.

Take my advice. Enjoy good health

not as your due but the blessing it is

like Spring, laughter,

death.

Conclusion

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

Summer Blogging: Traveller’s Joy

July 20, 2009 at 3:58 pm

Traveler's Joy

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

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

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

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

The Family Portrait Project

June 29, 2009 at 10:57 am

deformities.jpg

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

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

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

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

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

Of Current Interest

June 8, 2009 at 3:09 pm

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

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

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

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

Felice Aull