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

Interesting Lectures Online

May 27, 2009 at 12:28 pm

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

Felice Aull

Let The Living Teach Physicians About Healing

April 12, 2009 at 8:59 pm

A physician watching over a sick child.
Commentary by Felice Aull, Ph.D., M.A.; Adjunct Associate Curator, New York University School of Medicine; Editor in Chief, Literature, Arts, and Medicine Database

In a recent op-ed piece in the New York Times ("Dead Body of Knowledge") Christine Montross made a plea to continue the long tradition of cadaver dissection in medical education.A Montross, a physician and author of the thoughtful book, Body of Work: Meditations on Mortality from the Human Anatomy Lab, argues that anatomy courses based on human dissection offer "a safe and . . . gradual initiation into the emotional strain that doctoring demands." She is concerned that recent trends to incorporate advanced imaging techniques into the anatomy lab may even replace dissection completely and believes that medical students will miss out on the emotional conditioning that human dissection provides. A few days later the New York Times published six letters to the editor responding to Montross’s essay — all of them written by medical professionals or medical students. Five of the six letter writers supported Montross’s position, but a Stanford University professor disagreed, stating that "teaching anatomy cannot be couched in an either or framework; instead, technology and cadavers should enhance each other." I agree with the Stanford professor and here argue that dissection of a preserved cadaver, while it has much to offer for medical education, is not a teaching tool to help physicians and other health professionals "cope" with the emotional demands of working with sick and dying human beings. It has, to the contrary, been noted that the inevitable objectification of the body that takes place as the cadaver is dissected during months of anatomy teaching, marks the beginning of the developing physician’s professional detachment — a detachment that needs to be unlearned and guarded against so that it does not interfere with appropriate care for patients.

Writes one student during her anatomy course, "I can see how easy it is for health professionals to focus on the body and not on the person" (p. 38, Anatomy of Anatomy in Images and Words, by Meryl Levin). And another writes, "I suppose I have become comfortable, or at least reconciled to the reality of the next 10 weeks. I don’t like that. I don’t like that I have stopped truly thinking about the experience, because there is still a lot to think about. These cadavers did once live, breathe, eat, and sleep before they so graciously donated their bodies to medicine" (p. 58, Anatomy of Anatomy). These thoughtful comments were written by anatomy students who volunteered to participate in a project that photojournalist Meryl Levin initiated several years ago, culminating in her book, Anatomy of Anatomy in Images and Words. The students wrote journal entries during their anatomy course, which forced them to reflect on their experience. Most medical students do not participate in such ongoing reflective exercises while they take gross anatomy, or even after they complete the course. Even the memorial services that are often held at the end of anatomy classes do not address the problem of professional detachment and certainly do not address questions of how to interact with dying patients and their families. Following such a memorial service, one student noted that "I found it hard to become very emotional about these prosections, these bodies, these individuals, these first patients of mine. Maybe I am on my way to acquiring some of the tools I will need to become a physician — a scary thought though, because that is not the kind of physician that I would like to become. . . . must we have a memorial service each time we encounter death in some form or another? It worries me a little that we (or I) needed the service to step back for this all-important reflection, something so many of us could not or would not have done on our own, individually. Hopefully dealing with death will be different — not easier, just different — the next time around" (p. 124, Anatomy of Anatomy).

There are, it is true, some medical schools that nowadays recognize the problem of professional detachment and its early beginnings in the experience of intensive cadaver dissection in the gross anatomy lab. Most notable among them is the University of Massachusetts Medical School, which, under the guidance of anatomy instructors and thanatologist, Sandra Bertman, work with students to help them recognize and articulate (verbally and in drawings) their own fear of sickness and death and other implications of working on the dead-see annotations of Facing Death: Images, Insights and Interventions, and One Breath Apart: Facing Dissection, Bertman’s books detailing this approach.

But what will dealing with death be like when it happens to a person the physician has been treating? The artificially preserved cadaver of the anatomy lab cannot be equated with the complex physiologic and emotional processes of becoming sick and of dying, and its dissection cannot be equated to working with suffering or dying patients and those who love them. The cadaver is a static entity, a representation of what once was, not a process that the student has witnessed as it was unfolding. Newer imaging techniques at least allow observation of some body processes, even if they do not provide the emotional substrate for that body and its interactions with others. Although students may project their fears onto the cadaver, the cadaver cannot help them to negotiate the needs of unpredictable and changeable human beings-human beings who, as physicians, they will come to know, however fleetingly. That negotiation can only be learned about and confronted by working with the living and continually reflecting on that work. Generations of medical students have, after all, learned anatomy from cadaver dissection, but physicians have been criticized for failing to engage with dying patients and their families. It is the incorporation of a medical humanities perspective into all phases of medical education, not cadaver dissection per se, that attempts to address such problems.

References
Bertman, Sandra L. One Breath Apart: Facing Dissection (Newton, Mass: Ward Street Studio) 2007

Bertman, Sandra L. Facing Death: Images, Insights, and Interventions (Washington, Philadelphia, London: Hemisphere) 1991

Levin, Meryl. Anatomy of Anatomy in Images and Words (Third Rail Press

Ethics and Aesthetics: Photographing Patients

February 5, 2009 at 1:12 pm

Arthur, 2007

Commentary by Ana Blohm, M.D., Assistant Professor of Medicine, Mount Sinai School of Medicine; physician in Mount Sinai’s Visiting Doctors Program; co-director, Humanities and Medicine Program in the Division of General Internal Medicine

"Is it OK if I take your picture?"
"Of course Doc, you can do anything you want."

For almost five years I have been taking care of homebound persons in upper Manhattan. The majority of my patients are elderly and frail, the rest are disabled by the advanced stages of chronic or terminal medical illness. A small minority suffers from psychiatric illness that prevents them from leaving the home. At any one time, I care for approximately ninety patients and I see them at regular intervals in their homes. If it weren't for our Visiting Doctors Program, these people would mainly be getting medical care through the ER, often when it is too late to affect the outcome of the acute event that brought them there.

Also for five years, I have been photographing many of these patients. It is impossible for me to clearly articulate why I started to document my visits, except to say that for me it seems more inexplicable not to photograph the world my patients live in.

From Chart to Art

At first, I started taking Polaroids to help inform the medical history. We are a group practice and often care for each other's patients over the phone, and in such a setting a photograph can be an invaluable aide in medical decision-making. The photos also helped me recall my patients when I was new on the job. I didn't think twice about the propriety of taking these pictures, they were an invaluable part of the medical record and were only used as such. The consent form was signed as a bureaucratic formality.

Almost immediately, I started to appreciate the Polaroids aesthetically. There was something touching in my patient's expression, something timeless in the corners of the room that were visible in the background. I found myself composing the images deliberately; I tried to include a colorful quilt, a glowing Christmas tree, a stuffed animal collection.

On my end, this still implied no conflict. Despite the fact that I was taking some artistic liberties, the photos of my patients remained destined for the chart as a useful part of the medical record; I was just having more fun at it. And again, the consent form was completed and never thought about again.

The Polaroid project ended when our practice adopted an electronic medical record, and at around the same time I upgraded to a digital camera. It would not be entirely truthful to say that this was just to continue to get images into the medical chart; by this time I had been overcome with a compulsion to photograph my patients and their home environment.

I took my camera along with my doctor bag, and after completing the medical visit I would sometimes ask for permission to photograph. Often, the patient caught unaware would say "next time" and I would return to find them dressed up with a wig and make-up, the bed perfectly made, and the apartment cleaned and dusted. This often altered what I had liked about the scene initially, but at least it validated for me that my patient had understood the far-reaching implications of my request. So I photographed sometimes for them, and sometimes for myself. But clearly, a line was drawn, and these pictures were no longer for the chart.

Some of the portraits became teaching slides for students and residents, figures in journal articles, illustrations for our program's brochure, and images that helped in raising funds needed to help maintain our program. One photograph was reproduced and used by the family of a patient as the picture for her funeral service; another one became a Christmas card. On my end, I hesitantly began to show the images of my homebound patients in my photography classes, and started to wonder if I would ever find it acceptable to myself to publish them in entirely non-medical and non-academic arenas.

My Patient/My Muse

Over the years I have cared for hundreds of patients and photographed less than thirty of them. I limit my portraits only to those patients that I judge can give informed consent in the truest possible sense, and I only ask patients that appear to be extroverts and empowered enough to say "no" to me. I make it clear that I am taking a picture because I like what I see: the person, their room, or their belongings, and that it might be shown to others outside Mount Sinai. I do not ask surrogate decision makers for permission; if my patient is incapacitated I can't allow myself to make their portrait, period.

I discard photos that are unflattering, and all that seem to be ironic, sensationalistic, or morbid. I am vigilant about avoiding "illness pornography." Occasionally I will open the blinds or move something out of the camera's way, but I do not compose scenes, direct my patient to pose, or place anything in the photo that is not there. After I photograph, I bring a copy of the photo as a gift and again ask for permission to share it with others. Finally, I embrace my institutional subjugation by asking my obliging patient to sign (originally two, now three) HIPAA forms.

My consent standards are higher than those of the average photojournalist or fine art photographer, and yet, I get butterflies every time I think about what I am doing. Why is that?

I suppose the answer lies in the fact that I feel that it is easy to be "ethical" in the trivial sense: ensuring informed consent, respecting confidentiality, signing forms, etc, etc. But ethically speaking this is low-hanging fruit, and being satisfied with this level of compliance is a sign that one is missing the actual moral issues inherent in patient photography.

My patients are often surprised about the way in which I ask to take their picture. The majority seems to feel that all my explanations are unnecessary… after all: "it's just a picture not a blood draw." And often enough, for most of them, that is all it is: "just a picture." The reality is that most of them have more important things going on in their lives than to care about pleasing their doctor, about whether an image of them will be floating around the world, or about the subtleties of whether their consent is truly informed. But there are a few patients that deeply desire to be "good" for me and they probably feel that this includes being agreeable to my eccentricities. Despite the power differential, although plausible, I don't think this is an issue of them feeling that if they were to object they would loose me as their doctor or that it would affect the quality of the care I will provide. It is simply that they value our relationship and genuinely wish to help me. But by placing them in this situation I may be overstepping my boundaries as their doctor.

Ethics and Aesthetics: What Now?

How should I approach this dual role as a physician and a photographer? Are the ethical standards higher for me than they are for a healthcare provider taking a teaching photo (say, documenting the medical care in an underdeveloped country)? Are they higher for me than for a photojournalist illustrating a story on healthcare? (1) And interestingly, is there something inherent in photography that makes it a more "objectionable" artistic pursuit for a physician than writing about a patient, or even sketching, painting, and sculpting the likeness of a patient? The answers are yes, yes, and yes.

A physician that photographs a patient for illustrating a journal article is first and foremost a healthcare provider; a journalist reporting in healthcare is first and foremost a journalist. The roles in these cases are clear, and there are no expectations beyond the obvious ones associated with the interaction. Doctors involved in the arts do grapple, consciously or unconsciously, with competing and sometimes opposing drives: a situation that is approached medically is often experienced aesthetically and vice versa.

More has been written about ethical and moral principles to guide physician-writers than to guide any other physician-artist. Rita Charon argues that patients own their story and we must seek their approval before we publish any literature in which they might be recognizable, even if only to themselves or to close relatives. (2) This may not be applicable to all types of medical stories (for example medical errors) or to all patients (the "difficult" patient, the psychiatrically ill, or those for whom disclosure may be distressing), but it is a good general rule. Dr. Charon states there can be a therapeutic value in sharing a story with the patient that inspired it, and I find a similar value for patients and their caregivers when I bring photographs into the home.

The ethical question in writing fiction, non-fiction, and creative non-fiction, is not necessarily about the propriety of using your patients as inspiration for artistic work-it has more to do with the subsequent dissemination of your aesthetic output. The issue becomes one of privacy and of authorship. If privacy is protected by changing recognizable facts, then at what point are the particulars altered so much that the distinction between fiction and non-fiction becomes absurd? If the fiction is tinted with the hue of a real interaction, then is the physician-writer guilty of thieving (3) from her patients for the benefit of her characters?

Photography by its very nature multiplies the issues privacy, confidentiality, and authorship. More than a sketch or a painting, a photographic image implicitly tends to be equated with reality. What can be more real than what we see with our own eyes? Some practitioners of the art even gave photography the power of being more "authentic" than reality itself. Photographer Edward Weston spoke of achieving "the stark beauty that a lens can so exactly render… without interference of artistic effect." (4) But the whole reason photographs are powerful and bewitching is precisely due to this "artistic effect" coupled with the cultural and social contexts in which the picture is made and subsequently viewed.

In photographing my patients and their home environment, I am harnessing their aesthetic to fuel my own. They arranged their clothes, their bed, their couch, and their paintings a certain way, and all I do is respond to the scene visually by composing a photograph in a way that was interesting to me.A Again, I am facing an issue of authorship akin to that of the thieving physician-writer.A And even worse, in terms of confidentiality, what can be more sacred than a patient-physician interaction in the privacy of the patient's own home?

Embracing the Gray Areas: Incorporating Ethical Conflict into the Work

All these issues are troubling to me, and yet I continue to photograph. My thinking is precisely that if I ever cease to be troubled by what I do, then I will have reached the point at which it would be morally wrong from me to continue the project.A I try to navigate this ethically grey area by choosing my subjects carefully, by seeing my patient as my collaborator, and by being candid about my motives.A Transparency is key for achieving what I would call "artistic" informed consent (there is no form to sign for this one.)

I enjoy showing my patients and their caregivers the images we make. Overwhelmingly, the response is one of amusement, and the snapshots tend to get a lot more attention than the "serious" work. But occasionally there is a deep appreciation of being shown their own environments in a different way: "I didn't know it looked like that!" "Who would have thought my room looks so nice?" They may never enjoy the print for the same reasons I do, but at least we will have reached an understanding that there is some meaningful value in it for both of us.

Ultimately, the validation comes from seeing the growing Ana Blohm collection of photographs on the walls of my patients' homes.

References
(1)See for example the work of Eugene Richards and Nicholas Nixon
(2)Charon, Rita. Narrative Medicine: form, function, and ethics. Annals of Internal Medicine. 134:83-7 (2001).
(3)Baruch, Jay. The Story Always Comes First. Commentary in Literature, Arts, and Medicine Blog. October 17, 2008.
(4)Weston, Edward, In Newhall, Nancy, ed. The Daybooks of Edward Weston, Volume II, p. 147. (New York:Aperture) 1973.

Editor’s note: For a video of the work of The Visiting Doctors Program, featuring Dr. Blohm, see: www.aarp.org/family/caregiving/articles/doctor_in_the_house.html

Thoughts For The Season

December 14, 2008 at 4:01 pm

Fireworks exploding in the night sky over Newcastle

Commentary by Felice Aull, Ph.D., M.A., editor of this blog and of the Literature, Arts, and Medicine Database.

A few thoughts as this blog editor takes a holiday break until after the New Year:

In honor of the season, we post an image of celebration, yet we do this with some ambivalence. When so many in this world are suffering it seems unseemly to engage in celebration. If we are lucky, we have family and friends to provide emotional support in difficult times, and live under governmental systems that are reasonably responsive to the needs of their constituents, but many do not have that luxury. It is the task of medical humanities endeavors to draw attention to injustice and to debate solutions to the persistent problem of man’s inhumanity to man.

APeace.

Narrative Genetics: Following the Trail of Spit

October 30, 2008 at 2:51 pm

Genetic Modification -  Swirl of DNA fragments suggesting the mixing of genes in genetically modified organisms.   Photograph 2003. Guy Tear, Wellcome Library, London

Commentary by Marsha Hurst, Ph.D., Narrative Medicine Program,; faculty member and Research Scholar at the Institute for Social and Economic Research and Policy, Columbia University; co-editor with Sayantani DasGupta of Stories of Illness and Healing: Women Write Their Bodies (Kent State University Press, 2007)

 

"When in Doubt, Spit it Out." (1) It was fashion week in New York City, and the DNA testing company 23andMe was taking advantage of the party mood to promote its spit-based DNA testing product, now being offered at a discounted rate of $399.A Normal business at 23andMe is not conducted at celebrity spitting parties but online, where you can order a test kit, send in your saliva, and a month later get the pieces of an 89-gene DNA puzzle, that can be building blocks for family ancestry stories and future illness narratives.A In addition to connecting with past and future, this 2.0 version of the narrative, situates you as part of a current social network so that your story can be shared with others in multiple configurations of family and genetic connectivity.A The company "democratizes" your personal results by making them invitations to network, as in "You are invited to join the group Slow Caffeine Metabolizers."

I am fascinated by this story of the 23andMe spitting party and its place in an area of study, research, and analysis some now term "narrative genetics": the exploration of how genetic understanding and belief are expressed through story, and of the impact of those narratives on our person, our society, and our culture.A In order to better understand narrative genetics, I have organized, with the help of Sayantani DasGupta, and our colleagues in the Narrative Medicine Program at Columbia an interdisciplinary faculty seminar on Narrative Genetics. The seminar, open to the public, is sponsored by ISERP-the Institute for Social and Economic Research and Policy at Columbia University Topics include genetic narratives in film, reproduction, advocacy, clinical practice, family narratives, disease narratives, and genetic narratives of race.

What are the stories we tell about ourselves, our identities, our families, our communities, our society, and how have these stories become "geneticized."?A Narrative genetics is about how and why we use genes to tell these stories.A And what these genetic narratives then, in turn, can teach us about the way our society explains health and illness, personhood and community.A Certainly for much of this new millennium we have, as anthropologist Kaja Finkler had already noted in 2001, "seen an explosion of research in genetics and on genetic inheritance," and with that an explosion of popular interest-and popular expression. (2)A Amy Harmon’s series on "The DNA Age" in the New York Times only confirms a mainstream fascination with genetic stories, and with the essentializing "me-ness" of these reports.A These stories about genes are about our uniqueness-but also connect us with our commonness in ways that appear to be reassuring, even if they are surprising.A Searching for who we are through genetic testing has become a construction for the American "roots" narrative.

Narrative Genetics as Recreation

AA year ago, prominent scholars published an article in Science on "The Science and Business of Genetic Testing," addressing a concern that ancestry genetic testing was treated recreationally-and promoted as such commercially. (3)A Testing results told a genetic family story that was not only simplistic, incomplete and inaccurate, but also had important personal and policy implications.A "Recreational genetics" came to mind again as I sat down to write this blog about narrative genetics and was diverted by that 23adMe spitting party headline.

Aside from the fascinating frivolity, the contextualizing of personal genetics in recreational and social space, the party report also tells a familiar story of health commerce and medical marketing.A Imbed a product in the world of celebrity, of glamour, of wealth, and it will sell to those who aspire to this world.A And because both celebrity and marketing are about making private lives public, it reverses much of the focus of genetic public policy, which has been on the privacy of genetic information and the protection of that privacy. (4)

Besides commercial use, public genetic narratives have been widely used for advocacy purposes-particularly to generate funding for research into genetic conditions.A In the 23andMe narrative entrepreneurial success and genetic disease advocacy are intertwined. Sergey Brin, a co-founder of Google and the husband of Anne Wojcicki, co-founder of 23andMe, has not only had his DNA tested by 23andMe, but took his results a step further than the party or the company’s social network:A Brin announced on his personal blog, "Too," (Sept. 18, 2008) Athat he had a mutation of the gene LRRK2 gene, known as G2019S, which increases his risk of getting Parkinson’s disease, a condition from which his mother, who also carries the gene, suffers.

Brin tells his family story as a narrative of personal genetic risk, of family caring, and of genetic disease advocacy.A It is also a familiar American narrative in which great wealth drives medical research.A The family has already endowed a professorship to support research into Parkinson’s and Brin has framed the personal knowledge he gained through 23andMe testing as an "opportunity" to support advocacy and research into Parkinson’s.A In fact the company 23andMe also supports research into genetic conditions by encouraging non-moneyed contributions:A Spitting parties are encouraged to gather "anonymized" saliva samples for genetic research purposes.

Genetic Narratives as a Public Good

A parallel project to the 23andMe corporate enterprise -the Harvard-based, but privately funded, Personal Genomes Project -also constructs personal genomic stories as public information, but for the larger "good of the general public" (see Mission Statement). As an "experiment in public access" (5), volunteers are recruited to share their "genome sequences, related health and physical information, and [to report] their experiences as a participant of the project" (PGP Mission Statement). The first results of this Project were recently released. (6) Celebrity in the non-profit academic world is constituted somewhat differently: The PGP-10 — the first 10 volunteers-include a mix of mainly science and medicine entrepreneurs, academics, and investors, led by George Church, a Harvard professor of Genetics. AAMembers of the PGP-10, like the celebrities at 23andMe parties, are expected to inspire by example. In keeping with the academic and public responsibility narrative, however, the 100,000 volunteers accepted into the PGP must go through a complicated informed consent process, including a test of basic genetic knowledge. Is there is a hint of an old "positive eugenics" narrative here? Is there a challenge to the concept of informed consent when consent is given to a social experiment where risks can barely be enumerated?

Both the for-profit and the not-for-profit versions of making the personal genome story public beg the complex question of whether, in this genomic age, anonymity is even possible. Our body parts and bodily fluids scream out our identity in any disembodied state. The Personal Genome Project openly questions whether "guarantees of genome anonymity" are even "realistic." As a society we then must consider the implications of constructed genomic narratives, in the same way as the constructed narratives of race, gender, and disability in America are being critiqued.

Genetic Narratives as Advocacy

ATo the extent that genetic stories are personal, familial, entrepreneurial, or even activities of individual choice and private financial means-they are in the "private" sector, although personal genome stories are both privatized commercially and publicized in social and socially "responsible" spaces.A Genetic narratives that empower the private funding of scientific research enter a kind of private-public realm with unclear and easily transgressed borders. His Brother’s Keeper, the story of how Jamie Heywood directed an all-out war of "guerilla science" to save his brother from the lethal ravages of amyotrophic lateral sclerosis (ALS), illustrates the power of a family genetic narrative that drives an extraordinary research effort.

In our Narrative Genetics seminar, we will hear a very different story: Huntington’s disease as a family narrative of illness and risk.A Alice and Nancy Wexler’s work combines writing, research, and advocacy in a narrative of families and communities that has guided scientific genetic research; and, as an integral part of that work, they have told the stories of the meaning of this disease for families and communities in vastly different places, cultures, and times.(7)

As a health advocacy educator I am keenly aware of the power of personal stories to drive public policy, and stories of the impact of genetic disease on families and communities have been a compelling engine for organizing and action. Some have advised caution as we take public action based on private narratives (8), but we also know that our personal stories can compel us to public beneficence. Rachel Grob, who has elicited the stories of parents of children with cystic fibrosis, will discuss in our Narrative Genetics seminar how parent advocacy-and narratives of "urgency"-can impact policies like newborn screening that have become public "health" mandates.A Gaining thoughtful perspective and understanding of these genetic stories and their impact will be increasingly important-and increasingly difficult-as the genetic explanatoryA paradigm gains force through genetic knowledge and power through use.

The tension between narratives that tell a story of the centrality of the individual in society and narratives that tell a story of the centrality of the public interest is present-if not explicit-in the 23andMe story. AThe states of New York and California have told 23andMe and other biotech companies-including Navigenics and deCode Genetics -that sell genetic tests to the public (13 companies in California and 31 in New York) to "cease and desist" these direct sales. (9) The move to regulate commercial genetic testing is countered by a growing biotech industry that argues genetic information is part of an individual’s right to her own personal information. Do genetic tests disclose medical information or personal information, and is there a meaningful line between the two?A The public policy challenges to private commerce in genetic testing cross that infinitely contestable American frontier between private enterprise and public responsibility in health care.

Family Stories

AOne of the presentations in our Narrative Genetics seminar will be by a research group with which I have been working. (10) We have been asking pregnant women to tell us their family stories:A What does heritability mean to them?A What do they think is passed on to their children, and how? Our primary purpose is to develop ways to educate genetic counselors in "narrative genetics," teaching them to elicit and honor the stories their clients tell about inheritance in their families and their cultures. But our findings also remind all of us who are sometimes overwhelmed by the power of the genetic paradigm-and the potential of genetic science- that when we tell our own stories they may be more complex and nuanced cultural stories, stories about heritability in which genetics plays a very narrow role.A When the women we interviewed told their own family stories, they clearly connected with ethnic, racial, religious, geo-cultural,and socio-economic groups but their stories of community were not told through a genetic lens.

So I will end this blog entry with a family story.A When I was eight, and my mother eight months pregnant, a family friend in the medical profession convinced her that if she spit into a test tube, and the saliva looked brown under a microscope, she would give birth to a son-a much-valued outcome for a family with two daughters. My new sibling was, indeed, male, and the saliva had, indeed, been brown-but so, confessed my mother, had the Hershey chocolate bar she secretly consumed before spitting. It has become a family story that evokes an entire "photo album" of my young parents, happy and healthy in post-War America, and expecting ever more of the same. The story is set in a climate so optimistic that they could believe in a Stevenson presidency. Spitting into the test tube was part of the fun-and part of the hope of a post-war America.A We take for granted today the ability of genetic science to tell us the sex of a fetus, but in 1954 it was part of a narrative of scientific promise, a story in which science is put to work as commercial technology, making every home hum with appliances.A It was also, of course, a story of gender and family, imbedded very much within the world of the Feminine Mystique, a world in which a family without sons was an incomplete tale.

References

1. Allen Salkin, New York Times, Sept 14, 2008
2. Kaja Finkler, "The Kin in the Gene: The Medicalization of Family and Kinship in American Society," Current Anthropology, Vol 4, No 2 (April 2001), p. 235.
3. Deborah A. Bolnick, Duana Fullfiley, Troy Duster et al., "The Science and Business of Genetic Ancestry Testing," Science, Vol 318 (19 October 2007) [accessed October 18, 2007].
4. For example, the Genetic Information Nondiscrimination Act, signed into law last May after over 12 years of unsuccessful attempts at passage.
5. George Church. Genomes for All, Scientific American , January 2006, p.53 [accessed 10-22-08].
6. Amy Harmon, "Taking a Peek at the Experts' Genetic Secrets," New York Times, October 19, 2008.
7. See, for example, Alice Wexler's books, Mapping Fate (University of California, 1995) and The Woman Who Walked into the Sea (Yale University Press, 2008), and her article "Chorea and Community in a Nineteenth-Century Town," Bulletin of the History of Medicine - Volume 76, Number 3, Fall 2002, pp. 495-527.
8. See also Rebecca Dresser's book, When Science Offers Salvation: Patient Advocacy and Research Ethics (Oxford, 2001) as well as John McDonough's classic article in Health Affairs, "Using and Misusing Anecdote in Policy Making".
9. Andrew Pollack, "Gene Testing Questioned by Regulators," New York Times, June 26, 2008.
10. This group is based at Sarah Lawrence College and funded by a Jane Engelberg Memorial Fellowship award.

The Story Always Comes First

October 17, 2008 at 1:00 pm

A pair of round glasses on a sheet of writing, Wellcome Library, London, Photograph 2004

Commentary by Jay Baruch, author of Fourteen Stories: Doctors, Patients and Other Strangers (Kent State University Press, 2007). Assistant Professor of Emergency Medicine and Director, Ethics Curriculum, at the Warren Alpert Medical School at Brown University


Question: What do you call physicians who write?

Answer: Physicians.

This particular quip rings funny to me-and perhaps only to me. It riffs off of Kurt Vonnegut, who swathed this gem in toilet tissue in his book Timequake.

Question: What is the white stuff in bird poop?

Answer: That’s bird poop too. (1)

Like a skilled physician who distracts the patient to minimize the pain of injection, Vonnegut knows how to bury sharp insights in silliness so the reader never feels a prick.

Regardless of the color, whether it lands on your head or windshield, its still bird poop. That’s how I feel about being a physician/writer. One part cannot be extracted from the other. There are no smooth fascial planes along which to dissect, no separate and distinct blood supplies. Principles and moral values guiding my bedside responsibilities and behavior somehow feed into the slow meandering act of writing about them. I have trouble finding a physical and emotional distance that is far enough from this moral tug.

How does this commingling manifest itself?

When I write doctor stories, I write fiction. Over the years, this unconscious decision has nonetheless been buttressed by three dominant justifications: patient privacy, trust and potential abuse of the physician/patient relationship, and my belief that the story always comes first.

Thieving and the Physician/Writer

I’m very uncomfortable writing non-fiction or creative non-fiction (a genre I’m still trying to understand). Writing about "real events" and "real people" from my role as a physician makes me feel like a thief. For me, you can dress up real patients, bend and twist them like balloon animals to alter identifiable details, and yet fail to alter enough core narrative slivers. It’s not only what’s changed, but what remains that’s concerning. The female in life becomes a male on the page, the Latino kid on crutches is now a Korean in wheelchair, the bald guy preens about with a Mohawk. But too much faithfulness to the real, protection of the factual, the writer risks missing dustings of critical evidence, like fingerprints, or hair and skin spiraling with DNA.

Why this thieving feeling?

The physician-patient relationship is tender and complex, charged with issues of vulnerability and power. Privacy and confidentiality are ambiguous and complicated values in today’s society, especially in a time of media overexposure, reality TV, and the "Wild" Wild Web. The house of medicine is one arena where foundational values and laws from Hippocrates through HIPAA have clearly drawn the lines around privacy and confidentiality.

Question: What do you call patients in medical narratives?

Answer: Patients.

The Emergency Department: Writing and Rapid Trust

I often wonder if my specialty and sphere of medical practice deepens my sensitivity to the moral issues at play in the physician-patient relationship when I’m writing. Part of the demands of emergency medicine involves caring for sick strangers. A large part of that challenge involves building rapid trust. Not many people know about my creative work, but local reputations develop. I don’t want to risk the perception from patients that I might use them for personal purposes. I don’t want patients to guard sensitive medical information valuable to their care out of fear the physician/writer is listening with different ears. Patients must feel like the subjects of my gaze and attention, not as objects.

After all, I’m billed as a physician, someone bound by the Hippocratic Oath (or at least a less misogynist version of it), someone duty-bound to place patients first. The ID hanging from pocket reads MD, not PRESS. A stethoscope hangs over the back of my neck. I don’t carry a long, skinny reporters’ notebook. I don’t wear a coffee-stained sport coat. I wear a coffee-stained white coat.

Jack Coulehan and Anne Hawkins have written cogently about the ethical considerations facing physicians who write about their patients and the potential impact on the physician-patient relationship. (2) How would the patient react if he or she learned they were written about? Rita Charon has argued passionately that patients own their stories. Respect for patients demand they give consent for use of their stories. (3) I’ve beenA rereading their profound work and those of other health care providers and scholars the past few months as part of a project on the ethics of medical blogs. I recently lectured to medical students on this subject, and grappled to find a closing nugget for them to chew: The best I could do was this: Physicians must care for patients on the page, too.

The acute, short-lived, compressed form of my physician/patient relationship poses certain challenges to obtain permission. So I try to avoid the need for permission altogether.

The Medical Story as a Black Box

But more than the many moral concerns stated above, my decision to write fiction is dictated by the demands of the particular stories I’m trying to write. Fiction permits me imaginative freedom to plunge into confusion and discomfort, to ask questions that typically pull me far away from the real in attempts to pin down certain truths.

What is driving my desire to tell this story? Whose story is this? What’s at the heart of this story? How much and what part of this story earns space on the page, and what lives above the words, a past and present only I’m privy to. Once I make these decisions, write drafts, change my mind and kill more trees, I ask these questions again. Why am I writing this story?

George Saunders, fiction writer and essayist, describes art as a black box into which the reader enters in one state of mind and exits in another. The reader should exit a story altered somehow, feeling that something "undeniable and nontrivial" had happened. (4) The writer doesn’t get points for accuracy, for filling the box with facts and details. The writer must aspire for a more transformative experience. The poet Tess Gallagher alluded to this when describing the purpose of language in poetry. "To enter emotional spaces on terms that are original." (5)

Emotions pull me into a story, as well the desire to understand particular human behavior and to effectively communicate that which surprises and disturbs me. The medicine practiced in my stories must be accurate. But the characters and events, the narrative bones, aspire to a "story truth," more than a "happening truth." (6)A Tim O’Brien, in his stunning book, The Things They Carried, argues that if the reader identifies with the plight of the characters, it shouldn’t matter whether events are true. The truth is felt in the reader’s gut. Sometimes invention is necessary to clarify and explain. (7) It might be the contradictions between what happens, what is expected to happen, and perhaps, what should happen. I set off on unexplained and unexplainable detours. The factual details fall away. What remains are inventions, people and conflicts and histories absent at the beginning, fueled by tension and emotional engines.

The Importance of Wandering Far From Where I Started

I play with points of view, which removes any pretension of veracity. An example: many versions of my short story, "Road Test," were written through each character’s eyes, only to come to life when I realized this ER story belonged to the janitor. Only through his eyes was the conflict between the homeless drunk and the young doctor drawn most acutely, permitting the reader the most intimate and unbiased access to the complicated and often ugly thoughts and emotions that compelled me to write this story. It reads as a "real" event. The doctor and the homeless man weren’t drawn from particular people, but their actions and feelings and fears are painfully real.

Recruiting different voices in medical situations opens the story to moral opportunities. When the writer is a physician, the patient’s experience is channeled through, and controlled by, the physician. The narrative choices belong to the one with a stethoscope and a pen. One of my great challenges in the writing craft is developing the empathy, the curiosity and confidence to inhabit lives most unlike my own. Should I fail to create convincing characters, it’s not for lack of interest or desire, and I hope my respect for these persons seeps through.

Fiction gives me room to wonder and wander. I’m allowed to shape a medical situation, hold it up to the light and twirl from side to side. Take the man dying of cirrhosis, his domineering wife hot with disdain for doctors and demanding narcotics for her husband’s pain. These two individuals are at the center of my story, "Thin Walls."

Even the most unlikable people harbor a measure of kindness, and finding it is my mandate as a writer. Many difficult patients and family are sympathetic, calm and reasonable people who become unhinged or uncontainable only when they encounter the health care system, or the person in the white coat. Maybe every test I run brings them one step closer to bankruptcy. Maybe the wife’s scared to lose the love of her life. Maybe her pushiness is the only semblance of control left to her. Maybe she and her husband share an unhappy marriage. Now he’s dying, ramping up the misery?

The start of any medical story, at the bedside or on the page, always begins elsewhere. The "real" medical incident that set me off writing this story happened almost two decades ago, a moment that somehow, in the discovery of writing, led me to the two people mentioned above. I was an intern, holding a young child brought to the hospital for neglect. I don’t remember the details of the case. I remember the child’s empty eyes, the way his inert body slipped through my arms, his frail body awkward and surprisingly heavy.

I imagine what my invented characters would say if they read about themselves. I don’t necessarily want their approval-I’m often hard on them-only their acknowledgment that I had been fair and honest, that due diligence had been done to understand as completely as I could unflattering and embarrassing behavior.

Fiction and the Physician/Writer: A Weak Crutch?

There are limitations in writing fiction. Making up experiences might fail the reality test, be viewed by some as lacking validity. Physicians who write in non-fiction genres often become central characters in their work. That takes a great deal of honesty, courage, and skill to compose such narratives. I respect and admire many physicians who have created books that glow with compassion and insight. Perhaps I open myself up for criticism by removing myself from the action, by dispersing dark moments and emotions onto other characters, and making these fictional others bear my burdens.

Critics might also argue that writing fiction doesn’t absolve me entirely from accusations of feeding off my physician-patient relationships in my creative work. Henry James wrote of the "perfect dependence of the 'moral" sense of a work of art on the amount of felt life concerned in producing it," and the "kind and degree of the artists’ primary sensitivity which is the soul out of which its subject springs." (8) The intensity of a clinician’s work, the consuming, unshakable nature of the interactions, contributes to my "felt life."

In Conclusion: The Physician/Writer is Still a Physician

I want my characters, and my work, to resonate with readers, because they are all potential patients. Should readers come to my emergency department, I hope they will be comforted to learn that this writer will be caring for them, and they will trust the physician.

The process of writing fiction allows me to discover emotional truths about characters and myself that would have remained unearthed had I obeyed a chronological or factual accounting of events. Referring back to Saunders’ metaphorical black box, I aspire for readers to enter a story and emerge altered in some way. For me, that can only happen in the work of writing drafts, and remaining open to possibilities. The journey takes me to an unexpected territory far from where I began, from the place where words are chosen with great care, from my pressed white coat, my hospital ID hanging for all to see.

Endnotes


1. Vonnegut K. Timequake New York: G.P Putnam’s Sons, 1997 p.142

2. Coulehan J, Hawkins AH. Keeping Faith: Ethics and the Physician-Writer. Annals of Internal Medicine 2003;139: 307-311.

3. Charon R. Narrative Medicine: Form, Function, and Ethics. Annals of Internal Medicine 134;2001: 83-87.

4. Saunders G. "Mr. Vonnegut in Sumatra" in The Braindead Megaphone. New York: Riverhead Books, 2007. P.78

5.A A Piece of Work: Five Writers Discuss Their Revisions, ed. Jay Woodruff.A Iowa City: University of Iowa Press,1993. p.68

6. O’Brien, Tim. The Things They Carried New York: Penguin Books, 1990.p.203

7.A Ibid, p. 180.

8. James, Henry. Preface, The Portrait of a Lady. New York: Modern Library Paperback Edition, 2002: p. xxiii.