Walking The Dog: Incorporating Poetry To Help Learners Connect With Relationship-Centered Care

April 30, 2009 at 10:06 am

Satirical scene with doctor diagnosing well to-do man with Diabetes
Commentary by Johanna Shapiro, Ph.D., Professor, Department of Family Medicine and Director, Program in Medical Humanities & Arts, University of California Irvine School of Medicine

Theories of relationship-centered care

The concept of relationship-centered care (RCC) (1) and the related theory of human interaction designated Complex Responsive Processes of Relating (2) remain exceptionally fruitful ways of thinking about doctors and patients. Relationship-centered care includes attention to the personhood of both doctor and patient, as well as their respective roles; awareness of the importance of emotions in both the patient and the doctor; and recognition of the reciprocity of influences from both doctor and patient (and from the wider healthcare system and society itself) on the relationship itself (1,3,4). RCC challenges the notion of compassionate detachment and instead explores connection and engagement with patients as the most appropriate and moral foundation for relationship.

The theory of Complex Responsive Processes of Relating (2) highlights the nonlinear, reciprocal, and self-organizing nature of human interaction. It specifies that patterns of meaning and relating are co-created continuously throughout the communicative encounter; and that such patterns may repeat themselves, or due to the introduction of "novelty," may develop spontaneously in new directions. As Suchman writes, "the development of new patterns depends upon the diversity and the responsiveness in the interaction." (p. S42). In other words, encounters between doctors and patients that allow, even invite, variety and divergence from unprofitable patterns are most likely to evolve into more meaningful and more authentic ways of being in relationship, which ultimately serves patient well-being. This view acknowledges that patients as well as physicians exercise continually shifting power in the encounter; and therefore physicians have limited control in terms of outcomes.

Implications of RCC/CRPR for "noncompliance"

Although RCC and CRPR have implications for all aspects of the patient-doctor encounter, they are especially relevant in situations of perceived patient "noncompliance." Advances in social science research have helped challenge simplistic conceptualizations of adherence and compliance, in which doctor-patient communication consists of the doctor prescribing medication and the patient taking it. More recently scholars have introduced the term "concordance" to indicate the complex processes that must occur between physicians and patients in order to result in patient cooperation with the prescribed treatment regimen (5). For example, concordance implies an open exchange of ideas, rather than top-down orders, and focuses on both physician and patient values and priorities, rather than on those of the patient alone.

Nevertheless, walking the corridors of a contemporary hospital of clinic, one rarely hears reference to "lack of concordance." Chart notes still read, "Patient noncompliant with medication," with all the frustration and patient blame this term has come to imply (6). Neither do we often hear clinicians contemplating the implications of their diabetic patients' - or their own - emotional responses to their disease for the meaningfulness of future patient encounters; nor the applications of complexity theory to patient compliance. On these significant dimensions of interaction around diabetes care, as in so many other aspects of medical education, the gap between the formal and the hidden curriculum remains pronounced (7). In my comments below I will focus specifically on current attitudes of physicians and students toward the management of diabetic patients; and how the use of a poem can help learners clarify principles of RCC and CRPR that are pertinent to adherence/compliance dilemmas.

The frustrating case of diabetes

In the diabetic patient population, noncompliance is a widespread (and ill-defined) problem, with estimated rates ranging from 30-80%. The inability to "control" the patient, and therefore "control" the patient's blood sugar, is a source of substantial exasperation, even despair, among physicians. Yet one study (6) found that, despite physicians' awareness of the complex constellation of psychological and social factors that constitute obstacles to treatment, they routinely failed to address these issues in clinical encounters, relying on directive, one-way communications about numerical monitoring and outcomes. In other words, these physicians persisted in a linear, cause-and-effect, power-down communication model that ignored the complexity, emotionality (in themselves or their patients), spontaneity, and power fluctuations that occur continuously between doctor and patient. In another study of physician attitudes toward poor compliance in patients with diabetes, it appeared that doctors relied primarily on shock, pressure, and the threat of hospitalization to influence patients toward improved compliance, as defined by the physician (8).

Medical students as well can cling to the straightforward, linear models of communication that are often mistaken for patient education in the management of diabetes. Their focus (understandably, from their perspective as learners), is on diagnosis of the physical ailment. Once this is achieved, the rest seems easy to them: the doctor tells the patient what to do; and the patient, who naturally wants to recover, does it (9). One study noted that, in actual encounters with patients with diabetes, the most frequently reported challenge to student worldviews was how to achieve patient compliance (10). It does not require a great leap to expect that these students will likely become patronizing, directive, yet also despondent and frustrated physicians.

Poetry to the rescue?

While it is obviously crucial to help students rethink their assumptions about and gain insight into the relational foundation of medicine and the complex nature of communication, especially around the issue of compliance, the methods for doing so remain unsettled. By definition, RCC and CRPR are intricate, multifaceted constructs at variance with more simplistic mechanistic models of doctor-patient interaction, and this suggests that the ways of developing conversations addressing them must be versatile as well. Under these conditions, literature and poetry may well have a role to play in helping students develop more critical, self-aware thinking about relationship in general, and in particular about the process through which patients and physicians achieve concordance regarding drug and lifestyle regimens. To illustrate this point, I would like to consider John Wright's wonderful poem "Walking the Dog," (11) and how it clarifies and concretizes aspects of both RCC and CRPR, as well as complexifies students' thinking about patient compliance.

Walking the dog

In "Walking the Dog," a doctor looks at an old problem - an overweight patient with diabetes - in a new way. The doctor is frustrated - obesity and high blood sugars are killing his patient. He turns the problem over and over in his mind. What can he do? At last he has an epiphany - he will give his patient a little dog that she can walk, thereby providing her with much-needed exercise, that will in turn lower her weight and her sugars, and prolong her life. And, like the conscientious physician he is, he prescribes the puppy in a precise dosage: the animal must be walked twice a day!

At this point in the poem, the author (himself a physician) has already caught our attention. Prescribing a pet! This unusual approach helps students think outside the box in terms of innovative therapies. It also is an excellent illustration of the CRPR principle that patterns of meaning and relating are continuously created, and that while they may exhibit stability, sometimes new patterns arise spontaneously (novelty). At this point the students think they "get the message": treatment can involve something more than medication. Be bold, be daring! They can "tell" their patients to take a walk! They admire the physician for being so creative. But the author provides an additional twist (yet more novelty). To their chagrin, the students discover that the treatment doesn't work, at least not in the way the doctor thought it would. As it turns out, while the patient is delighted with her little puppy and cuddles it affectionately, it is her "lean" husband who "faithfully" complies with the prescription of twice-a-day dog walking. Twelve years later, happy but presumably still obese and still diabetic, the patient dies.

The narrative arc of the poem is so unexpected that it inevitably provokes a chuckle. Nonetheless, it is troubling to students on several counts. First it turns the concept of compliance on its head by showing that, in the poem, the compliance achieved is perfect but meaningless because the wrong person is doing it. This nonsensical take suggests that compliance is only one aspect of the encounter between patient and doctor and should not always be regarded as the only measure of success. Both the narrator (and we, the readers) have to grapple with the fact that patients don't always do what doctors tell them to do. In CRPR terms, students learn that doctors do not have omnipotent control over their patients. In discussing why the patient may have been unable to or uninterested in walking her puppy, students realize that following "what the doctor says" is influenced by many factors; and that while the physician's power may be rooted in expertise, in this case the patient has her own power, and exercises it by choosing a relationship with the puppy that is very different than the one the doctor envisioned, but one that nevertheless brings her joy.

In one final twist, the poem's artistry offers an additional puzzle. Somehow, despite the physician's initial frustration, despite the failed prescription, despite the ultimate demise of the patient, this is a gentle, bemused, and humble poem that effectively conveys the value of the doctor's caring and concern for his patient. From an RCC perspective, the poem shows us a doctor, patient, (and spouse) who are not simply roles, but people with emotions, idiosyncracies, frustrations, and affections. The narrator, for example, is well aware of both his own emotions, and those of his patient, and he is not afraid to introduce novelty to attempt to create new patterns in the situation.

Perhaps one of the most important lines occurs early in the poem, when the doctor realizes that his patient's health is deteriorating and that, so far, he hasn't been able to save her. At this point the narrator says, "So/I thought." This line illustrates the self and situational awareness that CRPR and RCC both advocate. By reflecting on his own and his patient's limitations, and the exasperation he feels at these constraints, the physician is able to develop empathy. Unwilling to give up or emotionally abandon his patient, he also resists giving in to his own annoyance and helplessness. Instead he keeps trying. In CRPR terms, the physician approaches his patient's "noncompliance" with curiosity, compassion, and more than a modicum of humor, rather than fear and defensiveness. Rather than burden himself with self-blame and guilt (the consequences of unrealistic control aspirations), he simply remains open to the possibility of change. And apparently he remains open for twelve years. Did he achieve better A1C numbers in his patient? Did he extend the patient's life? The poem is silent on these questions. But most students feel that doctor and patient shared a precious partnership, and that the physician's position in relation to the patient was fundamentally a moral one.

Conclusion

Prose and poetry have an important contribution to make in helping medical students engage with the abstractions of conceptual theories such as RCC and CRPR even as they wrestle with the challenges of issues such as adherence/compliance. Of course, the relational and communicative questions raised by RCC and CRPR play out daily between doctors, medical students, and patients, and obviously such encounters provide fertile soil for examination. Physician educators (12) have crucially advocated, and rightly so, for real-time, moment-by-moment awareness of actual clinical process. But just as Dr. Wright found value in retrospective reflection about himself and his patient, so too can students benefit from teaching experiences in which the priority is stimulating critical awareness, as well as the multi-tasking reflection that is required at the bedside. Through humanities teaching such as I have described above, the ways of perceiving and being that RCC and CRPR encourage become increasingly accessible and meaningful to students, and help create and sustain "attitudes of readiness" that, in turn, will seamlessly interface with and support their "real" lives as burgeoning physicians.

References
1. Beach MC, Inui T, and the Relationship-Centered Care Research Network. Relationship-centered care: a constructive reframing. Journal of General Internal Medicine, 2006;21:S3-8.

2. Suchman AL. A new theoretical foundation for relationship-centered care: complex responsive processes of relating. Journal of General Internal Medicine, 2006;21:S40-45.

3. Frankel RM, Inui TS. Re-forming relationships in health care. Journal of General Internal Medicine, 2006;21:S1-2.

4. Duffy FD. Complexity and healing relationships. Journal of General Internal Medicine, 2006;21:S45-46.

5. Chatterjee JS. From compliance to concordance in diabetes. Journal of Medical Ethics, 2006;32:507-510.

6. Wens J, Vermeire E, Van Royen P, Sabbe B, Denekens J. GP's perspectives of type 2 diabetes patients' adherence to treatment: a qualitative analysis of barriers and solutions. BMC Family Practice, 2005;6:20

7. Hafferty F, Franks R. The hidden curriculum, ethics teaching, and the structure of medical education. Academic Medicine, 1994;69:861-71.

8. Freeman J, Loewe M. Barriers to communication about diabetes mellitus. Patients' and physicians different views of the disease. Journal of Family Practice, 2000;49:507-12.

9. Anderson RM, Robins LS: How do we know? Reflections on qualitative research in diabetes. Diabetes Care, 1998;21:1387-1388.

10. Mitchell A, Paul TJ, LaGrenade J, McCaw-Binns A, Williams-Green P. Assumptions about disease treatment challenged in a family health clerkship: views of first clinical year medical students. Education Health, 2005;18:14-21.

11. Wright JC. Walking the dog. In Belli A, Coulehan J (eds). Blood & Bone: Poems by Physicians. (Iowa City: University of Iowa Press) 1998, p. 55.

12. Weissmann PF, Branch WT, Gracey CF, Haidet P, Frankel RM. Role modeling humanistic behavior: learning bedside manner from the experts. Acadamic Medicine, 2006;81:661-7..

English As The Language Of Medical Humanities Learning In Nepal: Our Experiences

April 22, 2009 at 9:17 am


Commentary by P. Ravi Shankar, M.D. and Rano Mal Piryani, M.D., Department of Medical Education, KIST Medical College, Lalitpur, Nepal

A previous blog (Shankar R., Medical Humanities: Sowing the Seeds in the Himalayan Country of Nepal). and journal articles (1, 2) described medical humanities modules at two Nepalese medical schools. Here we discuss some aspects of language choice when teaching medical humanities to participants.

Language is a touchy issue among students. Many Nepalese medical schools admit students from Nepal, India, Sri Lanka and few students from other countries. Most Nepalese students have Nepali or Nepal Bhasa (Newari) as their mother tongue. The Indian students speak a variety of languages; however, Hindi is the national language of India. Neither group is favorably disposed towards the other's language. English is the medium of instruction and is accepted by all (students and teachers).

Multiplicity of languages

The multiplicity of languages spoken in South Asia creates its own set of problems. Often the language of the dominant ethnic or religious group or of the majority of people is selected as the national language. However, the minority groups are often decidedly lukewarm towards this 'national language' and feel they may be at a disadvantage compared to 'native speakers' with regard to the national language. English often steps in as a compromise language. Due to the British legacy English is a familiar tongue and is also not the 'mother tongue' of South Asia's various ethnic groups. Only a very small minority have English as their native language. So all groups have an equal status as regards English and the issue of language can be resolved amicably at least for a certain period.

Language of higher education

English is the language of higher education in Nepal. Classes are conducted in English in universities and colleges. The language of interaction in the classroom may be Nepali or other languages. Also often the slides and other audiovisual materials are written in English while the subject matter is explained and discussed in a mixture of English and Nepali. Certain posh English medium schools in South Asia insist that students use only English within the campus to ensure that they become more familiar with English, especially the spoken language.

Language of teaching the Medical Humanities

A voluntary Medical Humanities module was conducted at the Manipal College of Medical Sciences, Pokhara, Nepal (1, 2). The majority of student participants were from two countries, Nepal and India. Literature and art, case scenarios, group work, debates and role plays were used to explore various aspects of the humanities. The debates and role-plays were conducted in English and language did not seem to act as a barrier to communication. The only problem noted was with literature excerpts. The English was felt to be tough on occasions by the participants and they had difficulty identifying with the situation depicted in certain excerpts.

The authors had conducted a module for faculty members and medical/dental officers at KIST Medical College, Imadol, Lalitpur, Nepal which also used English as the language of learning. The difference from MCOMS was that most of the participants were Nepalese. The authors used 'different' literature excerpts keeping in mind feedback from the participants of the Pokhara module. The excerpts were simplified. However, again the participants had problems with certain of the literature excerpts. Language difficulty and inability to identify with the situation depicted were again cited. The role-plays were conducted in Nepali and the group work was presented using a mixture of Nepali and English. As is common, the writing was in English but the presentation often in Nepali!

Art as a substitute for literature

At present, the authors are conducting a module for medical students at KIST Medical College. Six of the faculty participants of the previous module have joined as facilitators for the student module. The module again uses English as the language of learning. Keeping in mind previous experiences, the authors are not using literature excerpts in the module. It has been our consistent observation that painting and art has the ability to overcome linguistic, cultural, social and other barriers. We are using paintings for various sessions and the feedback has been positive. The role-plays are usually conducted in Nepali and the group work presentations are carried out in English and Nepali.

Jekyll & Hyde

We feel that being exposed to English right from childhood, students in South Asia accept it as a working language. Most however, speak a different language at home and this causes a dichotomy. May be we develop a split personality, a kind of Jekyll and Hyde phenomenon. English describing common place events and household and social activities may be especially difficult as these events are often described using local languages in our setting. Fruits, vegetables, flowers, common implements and religious and other customs and ceremonies common in the west are often difficult for South Asians to understand and comprehend.

Disadvantages and Advantages of English

Using English has the disadvantage of excluding patients from deliberations and decisions about their condition in many cases and may preserve and perpetuate an elite, snobbish image of the medical profession. Does thinking in the western language westernize our thoughts and our outlook? Do we loose the ability to think and understand the native perspective? Do we become 'brown sahibs'? Could this be one of the reasons behind the massive brain drain and migration to the English speaking west? Are we becoming strangers in our own countries?

English also has many advantages. South Asians have easy access to the vast amount of medical and non-medical literature written in English. In the case of the Medical Humanities we were and are fortunate to be able to access and use material in English. Also we can more easily communicate our findings and observations to other workers in the field. Western teachers also find it easier to help and contribute to a course using English as the language of learning.

Language and literature

We wonder, sometimes whether language is the only factor behind this lack of identification with and difficulty in understanding literature. In South Asia, after completing ten years of schooling students diverge into three streams, arts (humanities), commerce, and science. The top ranking students usually go for science. For getting admission to medical school it is mandatory that the student takes the science stream and studies Physics, Chemistry and Biology during the last two years of schooling. A study conducted at MCOMS had shown that preclinical students read widely beyond their course and were interested in literature. (3) However, information on reading habits of doctors is lacking. Could it be possible that doctors have not developed the ability and the aptitude to understand and appreciate literature? A demanding professional career may have prevented them from developing interests beyond medicine. Could the teaching of arts in schools, or the lack of it, have been partly responsible for this lack of interest? Certain aspects of arts and crafts teaching in South Asian schools and the language of instruction at school have been covered in a recent blog article (Shankar R.A Arts and humanities: a neglected aspect of education in South Asia, British Medical Journal: Medical Humanities blog).

Our experience with using English for humanities modules has been largely positive. But as English is the medium of instruction in medical school we are conditioned to the language and the viewpoint and thinking framework it imposes. Most of us are comfortable with English and will have difficulty dealing with technical medical terms in native languages. I think we will continue to use English as the language for Medical Humanities modules as long as it remains the medium of instruction. We have accepted its advantages and disadvantages and at present are unable to look beyond English. Eventually English may become more localized and accepted as a South Asian language or the region will develop another link language and medium of instruction. Which one of these two scenarios will come to pass only time will tell but considering past and present experience we think the former may be more likely!

References:
1. Shankar PR. A Voluntary Medical Humanities Module in a Medical College in Western Nepal: Participant feedback. Teaching and Learning in Medicine (in press)
2. Shankar PR. A Voluntary Medical Humanities Module at the Manipal College of Medical Sciences, Pokhara, Nepal. Family Medicine 2008; 40:468-470.
3. Shankar PR; Dubey AK; Mishra P; Upadhyay DK. Reading Habits and Attitude Toward Medical Humanities of Basic Science Students in a Medical College in Western Nepal. Teaching and Learning in Medicine 2008; 20:308-13.

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

Nurturing Reflection and Humanistic Practice: Growing Humanities Programs at a Suburban Community Hospital

February 22, 2009 at 12:40 pm

Commentary by Nancy Gross, MMH, MA, Palliative Care Community Liaison andAFacilitator/Scholar of Humanities Programs,A Overlook Hospital/Atlantic Health, Summit, New Jersey

"The humanities are the hormones…to infect with the spirit of the Humanities is the greatest single gift in education."A

Williams Osler, The Old Humanities and the New Science (1)

AAAAAAAAA Humanities Programs at Overlook Hospital

Since 2005, Overlook Hospital has promoted programs in the humanities. This was not part of an institutional plan, but rather at the initiation of several humanities proponents and some willing administrators.A These programs are stealthily flourishing in the midst of explicit campus, clinical and technological development.

1/2005-ongoing

A monthly two-hour seminar series running from January to June with twenty hospital employees as participants. Overlook is one of seven New Jersey hospitals participating in the program which is supported in over twenty-five states. Participants include both clinical and non clinical health care professionals. Literary works evoking medical themes are read and discussed; books and a meal are provided. The goals of this national program are to increase caregiver empathy for patients, to improve patient-physician communication skills, to stimulate cross cultural awareness, to enhance job satisfaction, and to create community among professionals. Evaluative data are available for the national, state and Overlook cohorts. As of the 2008-09 academic year, the hospital’s division of Academic Affairs has assumed support of this program.

  • Literature and Medicine: A Community Dialogue

9/2007-ongoing

A community based program modeled after the national hospital Literature and Medicine program. The program reaches 15-20+ participants per six month session, totaling four sessions during the grant period. The focus of this program is on educating participants around issues of aging, care giving, palliative care, medical decision-making, and end-of-life. Community response has been positive. The program has proven to be a powerful way to reach out to the community members in order to educate and empower them about the present day reality of medical institutions and end-of-life scenarios. This program has been generously supported by the Blanche and Irving Laurie Foundation.

  • Narrative Medicine/Medical Humanities Conferences

10/2007-ongoing

A ninety-minute monthly conference for Internal Medicine residents in which a short literary work is presented. Residents and faculty read and discuss the work in light of their own daily practice as physicians.A A short reflective writing session follows the discussion. Physicians share their work orally, and subsequently all edited writing is shared electronically. Physicians are encouraged to continue working on their pieces and to deposit their writing into their professional portfolios. Resident writing has appeared in hospital publications and research events.

  • Conversations

9/2008-ongoing

A ninety-minute monthly conference with 3rd and 4th year medical students during their hospital clerkships. Students are introduced to the concept of narrative medicine and medical humanities philosophy and practice. They are presented with a short published piece written by other medical students. They discuss the piece, and relate it to their own experience as emerging physicians. Students write reflectively and share their writing, which is subsequently distributed to the group electronically.

  • Film Night

9/2008-ongoing

A monthly film screening and discussion for residents and other hospital professionals that provides a relaxed and collegial atmosphere to de-stress. Classic and contemporary films that portray physicians and medical themes are shown. A discussion follows the screening.

  • Literary Readings and Special Events

5/2008-ongoing

  • Danielle Ofri, MD, PhD, physician/author read from her work Incidental Findings. Clinicians and community members attended
  • Paul Gross, MD, physician/author /founding editor of PulseMagazine.com presented a rationale for physician writing and elicited short pieces from family practice and internal medicine residents
  • Penny Harter, poet, read from Night Marsh to a mixed audience of health care professionals and community members
  • Stephen Kiernan, journalist/author conducted a conference call to discuss his work Last Rites with Literature and Medicine: A Community Dialogue participants
  • Rosemary McGee, poet, will read and discuss her work Spilling My Guts to Literature and Medicine at the Heart of Healthcare® participants

Proposed programs:

  • A Night at the Movies at Overlook

A pending grant proposal to have a monthly film screening at Overlook for the neighboring community. The focus of the films and discussions will be around aging, caregiving, medical-decision-making, palliative care and end-of-life.

  • Art Show and Lecture

Visit by Ana Blohm, MD to show her photographic work and talk to clinical staff and community members.

  • Patient /Family Story Project
  • In development

  • Partnering with Long Term Care Facilities to bring Literature and Medicine: A Community Dialogue to residents and families

A 'Infecting’ Hospital Culture with the 'Spirit of the Humanities’

Growing a culture of reflective practice that focuses on humanistic medicine has been a transformation that has taken place slowly, steadily and intentionally.A After just several years, I am happily seeing indications of change taking place.A It is hard to walk through the hallways of our 500 bed teaching hospital in northern New Jersey without someone stopping me to chat about a book we are reading, suggest a title, comment on a poet that has recently visited or offer an insight that surfaced at a reflective writing session. This is how doctors, clinical managers, nurses and other healthcare professionals often relate to me during their day of clinical work.A I consider this a clear measure of success. It indicates a hopeful shift in how the business of medicine is being done and how we are thinking of ourselves and the patients we care for. Taking even a moment in a day to connect with colleagues about the art, not the science, we see in our practice indicates an openness to explore what we are doing through the lens of the humanities. At a recent weekly clinical team meeting, the chief of medicine stopped mid sentence, ran out of the room, returning withAThe White Life by Michael Stein in hand. He went on to read a poignant passage about how physicians rarely experience the intimacy of caring for patients as nurses do. It was the perfect passage to get the meeting participants to recognize the essence of where our conversation was heading.

How Did This Growing Momentum of Humanities Mindfulness Begin at Our Hospital?

In 2005, I had the opportunity to participate in the first cohort of a literature and medicine seminar at the hospital. Overlook Hospital/Atlantic Health was among the first three New Jersey clinical sites invited to participate in the national Literature and Medicine: Humanities at the Heart of Health Care program supported by the Maine Humanities Council. AI was still a long time tenured faculty member in an NYC community college teaching in a department completely unrelated to the medical humanities and was concurrently enrolled in the graduate program in the medical humanities at Drew University. AI had extensive experience as a volunteer being with people at the end of their lives. When I was not teaching at the college I was interning with the hospital’s palliative care team.A AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA My goal was to explore palliative practices in an acute clinical care setting and transition from a long career in higher education into healthcare.

Participating in the monthly literary group especially resonated for me since I was already immersed in narrative expressions of illness through the graduate curriculum. Coming together with an interdisciplinary group of health care professionals to discuss text was a rich opportunity for me to understand the multiple voices heard within the healthcare environment. ASubsequently, I more fully appreciate how this gathering of clinical and non-clinical staff successfully debunked the customary hospital hierarchy and allowed space for individuals to think and express themselves outside of their perceived professional roles.

I had also begun to write stories of patients I had been with and had the occasion to read them at professional meetings within the medical humanities community. I was asked to write a series of stories voicing the experiences of healthcare professionals at the hospital. The collection was used for the centennial celebration of the hospital’s founding. The enthusiasm for the stories by the people whose voices they echoed, and hospital community at large, was an inspiration to me.A I was motivated to continue my discovery of the power of narratives and how they could be used to inform, provoke and empower people, especially as they navigated life-limiting illness and the end-of-life. This ultimately became the topic of my thesis research.

I retired from my faculty position at the college and was spending more time at the hospital. I was identifying mentors and wondering if I would ultimately find my own voice within this community of medical practitioners. By the third year of the hospital’s participation in the national literature and medicine program, I was invited to become the facilitator/scholar of the seminar. This challenged me to apply my skills as an educator in a new discipline.A The seminar series has been very successful, with a waiting list of applicants, and participants who protest when we break at the completion of the six month series.A We are currently contemplating to extend our current half year literature seminar throughout the academic year.

I thought it was crucial to find an effective vehicle to bring the message of palliative care to the lay community. If we were going to be effective in educating and empowering people to be advocates for the care they wanted for themselves and their loved ones at the end of life, we would have to do better than simply offering advance care planning workshops. The power, and beauty of stories and their ability to provoke change seemed clearly the way to begin opening the collective conversation about the end-of-life.A With the help of a grant, this became the community seminar series, Literature and Medicine: a Community Dialogue. The series has attracted a diverse community of participants and has motivated people to take action.

With the arrival of a new chief of medicine who understands the value of humanities education and practice, new opportunities have arisen. I was asked to develop programs for resident physicians, which have been successful and extended to medical students as well. Monthly film screenings and special events have also been successful, attracting sizable numbers in attendance. With the full integration and participation of the clinical faculty, young physicians witness behaviors and attitudes modeled by their seniors that instill respect and value for the power of story. A culture that recognizes, shares and values narrative is emerging.

Moving Forward

As we move forward with our humanities education, we see opportunity for refining programs that we already offer as well as developing new programs. We are looking closely at developing a program that will be directed at eliciting patient and family stories, using those stories both as mechanisms for healing and educating. AWe have begun to collect some elementary data to quantify the impact and efficacy of our humanities programs upon clinical practice. Thus far, the development and implementation of these programs, has utilized very little funding. It has essentially been a grassroots initiative based on the passions of a very few individuals.A However, hospital administrators have been noticing (and participating in) these activities, and there is a positive response to the work.A We are now preparing to make a formal proposal to the Division of Graduate Medical Education to garner financial and institutional support to grow our programs and to partner with our affiliated hospital to expand our humanities activities.

As the vision of our programs mature, so too do we as practitioners of medical humanities. I am proud to know that I have been an agent of change in the community hospital that I work. But I am humble as well, to know that I am just learning on the shoulders of the luminaries of the medical humanities. And I am grateful.

Reference

1. William Osler.AThe Old Humanities and the New Science.A Presidential address to the Classical Association, May 16, 1919. Online by Johns Hopkins Health System and University at http://www.medicalarchives.jhmi.edu/osler/oldhum.htm, p. 26 and p. 33.

A Time For Celebration And Contemplation: Inauguration Day, 2009

January 18, 2009 at 3:49 pm

Fireworks exploding in the night sky over Newcastle

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

It seems these next few days require a blog entry that digresses from our usual sequence of invited essays. The moment is of course historic. The moment is exhilarating. The moment is sobering.

In an earlier commentary, written just before Barack Obama was nominated to be the Democratic candidate for president of the United States, I invoked his candidacy and family background to draw attention to the fallacy of race as a biologic concept, and to problematize ongoing efforts toward race-based medicine. Now I invoke the onset of Obama’s presidency not only to celebrate his achievement and the barriers that have been broken, but also because he is an author, an educator, a thinker who does not see the world in Manichaean terms, and who counts among his friends a poet’s poet —Elizabeth Alexander, the scholar he asked to write an inauguration poem. I think I can even relate this moment to medical humanities!

I am now reading Obama’s autobiography, Dreams from My Father, published in 1995. I’m only up to chapter 5, but it is clear that this man, long before he sought the presidency, was self-reflective and could articulate the complexity of his personal feelings as well the complexity of the social dilemmas he was forced to confront. Aren’t these insights and skills what we in medical humanities are trying to encourage? How refreshing to have such a person heading our government.

How refreshing, also, that the President-elect chose a contemporary who is an award-winning poet, a scholar in African American and American studies (who will chair the department of African-American studies at Yale University later this year), and who has been honored by Yale for her teaching abilities. Here are the last few lines of one of her poems:

Poetry (and now my voice is rising)

is not all love, love, love,
and I’m sorry the dog died.

Poetry (here I hear myself loudest)
is the human voice,

and are we not of interest to each other?

from Ars Poetica #100: I Believe
In American Sublime

Are we not of interest to each other? Such also is the work of medical humanities-to be interested in, listen to, and hear the other.

The Seven Doctors Project: Creative Writing As Inspiration And Intervention

November 30, 2008 at 12:50 pm

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

Commentary by Steve Langan, author of a collection of poems, Freezing (New Issues Press, 2001) and a chapbook, Notes on Exile and Other Poems (Backwaters, 2005); executive director of ALS in the Heartland in Omaha, Nebraska; teaches in the University of Nebraska MFA in Writing Program and is working on a Ph.D. in literature and medicine.

A "Typical" Night

I just returned from a meeting of the Seven Doctors Project, a writing group I started at the University of Nebraska Medical Center to see what would happen if I encouraged mid-career physicians to begin, return to, or sustain projects in creative writing. I pair each willing doctor with a local writer who serves as his or her mentor and guide. Tonight, even I feel like writing. I usually come home from work, check e-mail, check it again, worry about stuff I couldn't finish at work, eat dinner, pitch in on the dishes, worry about not writing my dissertation, yell at my son for not getting his homework done, walk the dogs with my wife, watch The Daily Show, then crash. But not tonight. Dr. M., who works in the E.R. and tends the grapes in his small vineyard when he has time, presented two poems, a weak tamed-down narrative about being stuck for two long days on jury duty and a stunning lyric, his version of the Garden of Eden, which included an expected mention of the loss of innocence (though it had a "nice twist," another doctor mentioned, that made it "seem fresh").

"Have we lost our innocence?" his colleague, the internist Dr. K asked. "Is it because we know too much about the secrets of the body?"

We flowed into and through this conversation. Nothing is off limits in this space we've established. Trust has been developed. With the doctors in the room, we reviewed some of the stark facts of their specialized training, and one of the doctors said, "I think we are people who used to be more fun." We had a lot of laughs tonight, too. One of the participants admitted to having a crush on one of the writers! This is intimate work, revealing, potentially life changing. I've been trying to deny its power, but it's no use. The evidence has been collected. Even in our tucked away classroom on this undernourished campus in our middling state, the lives of many of the doctors have changed, it seems, as a result of being part of this writing project. That's what they keep telling me. And all I'm asking the doctors to do is to write poems and stories (their mentors help in a variety of ways, including emphasizing the need for revision) and submit them to the group during their designated week for all of us to discuss. We don't dismiss "reflective" work, but it's not our aim. We hold each other to trying to make the best poems and stories we canausing the aesthetic principles that are at the core of teaching and learning creative writing as our foundation and default. That's why the writers have been indispensable. Further, if "therapy" comes out of the writing project, that's not our fault. Whatever energy or therapy or good feelings the doctors receive from being part of the projectadoing this writing in earnest and turning it inashould be attributed to the rigor that the writers have helped enforce and the high standards that we seek and help maintain.

The Players

I've worked with a public health doctor who just earned her MFA in poetry, a convert; a plastic surgeon with a background in music composition who has become fearful of writing and so dedicated herself to writing poetryaand submitted a poem that included a stanza about how she only worries about her patients; an oncologist who loves the band Genesis and puts on his headphones once a week and jams on his Hammond organ; a transplant doctor who has completed one novel and has another in progress; a psychiatrist who wanted during college to be a poet…who wrote his first poems in many years, including a poem about his relationship with his powerful father; an OB/GYN who started by wishing to narrate incidents from his career…and began to consider some of the opportunities for metaphor that fiction allows and demands; the Chief of Infectious Diseases, who has dedicated about an hour during his workday to sitting in his office writing poems; the concerned internist, who taped a poem she loved onto the door of her officeathen, five minutes later, fearing being labeled "creative," tore it down; and the E.R. doc, who recalled for us when life used to be more fun. Their average age is 52. If we're not being generative in mid-life, Erik Erikson said, we may lapse into despair. I even invited a university lawyer, who in the early Sixties helped edit an avant-garde literary journal, to participate. We don't discriminate. These men and women have become as real to me as characters in an engrossing novelawhich means, to me, they have more roundness and substance than many of my acquaintances, family members, colleagues and neighbors. They've been telling us more. It seems, for the members of the Seven Doctors Project, a lot depends on, using a word coined by Samuel Beckett, saying and writing what is "ununsaid."

The Inner Voice

Through literature, and especially through the lyric poem, one gets to hear the "inner voice." It becomes necessary, even addictiveaan antidote for many of us to the language of the academy, politics, government…and church, school and the workplace. I've encouraged mid-career doctors to take time out of their busy lives ("Busy little me," one of the doctors referred to himself in his poem) to indulge the inner voice and work to place it on the page. They say writing makes them "happy" and gives them "energy"; they can't wait until next week. Confronted by the power of poems and storiesatheir own and othersathe doctors have been forced to pause to make a variety of evaluationsaabout themselves and their profession, primarily. They've developed friendships with their mentors and other members of the group. Some of the doctors say it's nice to have something to talk about other than work with colleagues. They see each other in the halls and chat about the poem they're working on for next week. Poetry has become a secret handshake. And it has resumed its original place, as agent of inspiration, for the doctors and the writers. Writers learn over time to achieve effects (which is not the same as being driven to make something new because you have to, because you have no other choice). So it has been inspiring to the writers to watch the doctors revel in the deep thrill of the new.

The Background; Mentorship

When I had the hunch and presented the idea to my advisor, I figured the doctors would hate the project and start squirming in their Gucci loafers. Distracted doctors, their beepers hemorrhaging, and all of them late for class because they couldn't resist billing one more hour. Even if they hung in there, I assumed they would present themselves as irritating showboats and know-it-alls unwilling to accept the writers' suggestions. Instead, I've developed deep affection for each one of the doctors, all of whom have worked hard to improve their work and participate in a conversation that has not always made sense to them. The subtext of creative writing theory and practice is "freedom." The quest for originality is necessary and a movement toward the sublime. Further, ambiguity has bearing in medical diagnosis, it seems, but is not something one frivolously rolls around in. Making the instant correct decision about a situation is king. After a long day, it was fun to watch the doctors start to delve into the text in front of them…and make an instant and simultaneous collective decision in response to the questions the writers began to ask them about what they were reading. Whoa! we frequently cautioned them. Let's take a little time here to think of all the possibilities, okay!

At this point, deep into phase two and assembling participants for phase three of the Seven Doctors Project, even I can't really deny its genuine effects. From observations, interviews with my subjects, responses to assessment questions and word of mouth, the project has helped and inspired my subjects at work and at home. We keep being congratulated for the project, and we keep congratulating ourselves. But maybe it's just a placebo, I keep thinking, or a niche that we could've filled with woodworking. Sure, the writers are wonderful, gifted and helpful, but I know all of them well enough to know some of their insecurities. They aren't publishing enough, they aren't smart enough, they'll never finish that story, collection of poems, novel. A writer's well-honed inner voice repeats, I'm a fraud, an imposter, a dilettante.

The project allows the writers to have a deadline for new work (the writers submit during the same week their "student" submits), but it's more than that, really. How often do any of us get to show doctors what we can do? The writers get to turn the tables on the doctors, and the doctors not only get to wonder what it's like to live more fully in the realm of the imagination, they get to practice doing this work, too, and play the role of the artist at least once a week and during time they squirrel away to work on their writing. Except for in one pairing, the writer-mentors have become heroes to the doctors. They wonder how the writers think. They've started to consider what the writers would say in response to the text they're working on…and revise accordingly. A recurring comment made by the doctors after their poems and stories have been workshopped is to give all the credit to their mentors.

In Conclusion

I'm not a social scientist or anthropologist or genuine medical humanities advocate or strict devotee. At this point, I'm not really an academic thinker at all. I've collected information and results on the study, but I'm just learning how to put it into serviceable academic order. And I'm certainly not a physician. As I shadow my subjects at work (partly as a way to learn more about the medical system but mostly to determine how they do their challenging work with such skill and creativity on a day to day basis), I'm sometimes asked if I want to become a doctor. My tongue in cheek response has been, "No, thanks. I have enough problems."

On the page and also in our conversations, I keep hearing, more than a minister or therapist or shrink might, the challenges of the doctorsathe mistakes they've made and witnessed, the things they wish they were able to accomplish, the holes in their lives. I feel privileged to have become their interlocutor, a role I've assumed, I think, because, really, what kind of threat is a poet to a doctor? Plus, as I said, I care about them. I really do. And I used to be afraid of doctors; I used to think, as a character in one of Denis Johnson's stories, says, that "Good health depends on the ability to fool doctors," I'm grateful to be able to present, along with my writer-colleagues, the practice of writing and the imagination as a kind of intervention in their lives. The doctors have taken the medicine; they keep following our orders. They continue to refer us to their colleagues, who call me to ask if they can join us at the next session.

Toward the end of class last night, I asked Dr. M. what it felt like to present his poems to the group. He told me he had been nervous all day. He was relieved, he said, after we finished talking about his poems. Which is a good outcome, because, though we admired his courage and the fact that he took a lot of time to do his work, one of the two poems wasn't very good at all. It needs a lot of work. He told us he'll try to revise it; his mentor reminded him that he's there for him. As we came to the end of our two hour gathering, time that members of the group keep telling me flies by, Dr. M. said, "You know what it felt like? I felt like one of my patients sitting on the table in a gown with my backside exposed." Oh, the joyato be that vulnerable again, even a little desperate and in need!

Borderlands: A Theme and Syllabus for Medical Humanities Teaching

November 14, 2008 at 3:48 pm

Hands reaching out

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

Now that I’m semi-retired, an elective course that I developed and taught for fourth-year medical students is retiring with me. I'm writing about it here, in the hope that other medical humanities educators might wish to adapt it for their teaching — it was very well received by participating students and, I think, served a useful function. (I believe Linda Raphael has introduced a version at George Washington University School of Medicine). I taught "Betwixt and Between: Borderlands and Medicine," for seven consecutive years at NYU School of Medicine, modifying it somewhat each year. The idea of adapting a borderlands theme to an examination of the medical profession came to me while studying the work of Edward Said and Gloria Anzaldua as I was working toward a master’s degree in humanities and social thought (35 years after getting a Ph.D. in medical science). Below I summarize my motivation for developing the four-week course and elaborate on the syllabus. References annotated in the Literature, Arts, and Medicine Database are linked. Full reading references are listed alphabetically.

Representation, the arbitrary, ambiguity

In his groundbreaking book, Orientalism, Said argues that European discourse constructed a stereotyped Arab identity-the Arab as Other-that was ideologically biased, "regularized," hegemonic, and that enabled the Western imperial project.A Said noted that boundaries are to a great extent arbitrary. Later, Said wrote more generically of stereotyping and subordinating representational practices that must be resisted; he recommended that we should think critically by positioning ourselves "contrapuntally" — from dual perspectives - imagining ourselves as geographic boundary crossers or exiles. Said noted that boundaries are to a great extent arbitrary. It struck me that these themes applied to certain aspects of the institution of medicine and patient-physician interaction, and Bradley Lewis and I co-authored a paper that discussed these analogies (Medical Intellectuals: Resisting Medical Orientalism. Journal of Medical Humanities, Vol. 25, No. 2 / June, 2004, pp. 87-108). We argued that like Orientalism, medical discourse is the cumulative effect of selecting and reconstructing "the patient" and "disease" through the lens of the medical expert. Like Orientalism, medical discourse essentializes and reduces the patient, making empathic communication between physicians and patients difficult. We described how, in contrast to "medical orientalism," several physician writers cross personal and professional boundaries and think contrapuntally in their writing and interaction with patients.

I hoped that a contrapuntal approach to considerations of medical practice and the representation of individuals as "patients" might stimulate medical students to think "outside the box" about the institution of medicine, their future professional roles and interactions. Gloria Anzaldua’s provocative book, Borderlands/La Frontera, provided an additional perspective on borderlands that intrigued me in its applicability to medical education and practice, namely, that borders are often areas of dispute, ambiguity, cultural mixing, and even danger. Students could consider borderland areas of ambiguity in medical practices and training- an exposure that is often missing in their education. Fourth year medical students, being on the border of official designation as doctors, and having a perspective on their medical school experiences, seemed particularly suited to such an approach.

 

Features of the elective:

  • Scheduled as a "full-time" month-long course in February, with no simultaneous clinical rotations or other electives permitted.
  • Meets for 2.5 hours each of three mornings per week, for four weeks. Extensive readings, and study of online art and other web materials between sessions fill out the students’ time.
  • Two short papers or creative work that responds to the course subject matter
  • View and discuss a film on the last day of class

Week 1 topics:
How does the transition from student to professional (professionalization) occur: objectification of the body, responsibility vs. inexperience, instruction in "professionalism" vs. the hidden curriculum

Interaction between professional and personal life

Week 2 topics:
Perspectives on personal-professional and patient-physician boundaries
Narrative and empathy

Week 3 topics:
What is "normal": defining disease; social construction of disability; race and race-based medicine
Difference, rejection, Otherness
Medical uncertainty

Week 4 topics:
Illness as exile
Socioeconomic marginalization and illness

Week 1 : student/professional, personal/professional

Session 1. Introductory session uses poetry and art to introduce topics of cultural ambiguity ("Day of the Refugios" by Alberto Rios, "Original Sin" by Sandra Cisneros), borders between physician and patient ("Talking to the Family" by John Stone, "Open You Up" by Richard Berlin) distancing of the sick from their own health ("Across the Border" by Karen Fiser), isolation (Edvard Munch’s paintings Death in the Sickroom, The Dead Mother).

Arbitrariness of borders, the Other: one-page excerpt from Edward Said’s Orientalism.

Session 2. Objectification of the body as students become acculturated while learning gross anatomy through dissection. Anatomy of Anatomy in Images and Words by photojournalist Meryl Levin traces this process with photographs and student journal entries. Secret knowledge not previously available to the lay public. But now this knowledge is public: Gunther von Hagens’s Body Worlds exhibit.

Student response to gross anatomy course: poem, "Apparition" by Gregg Chesney. Intern trains herself to be detached: poem, "Internship in Seattle" by Emily R. Transue.

Historical perspectives on objectifying and learning from the body:

the dead body — Rembrandt’s painting, The Anatomy Lecture of Dr. Nicolaes Tulp)

the living body-Eakins’s paintings, The Gross Clinic and The Agnew Clinic

development of technology ("Technology and Disease: The Stethoscope and Physical Diagnosis" by Jacalyn Duffin)

Compare representations (paintings) of physician-patient interaction: The Doctor by Sir Luke Fildes and Picasso’s Science and Charity.

Patient’s perspective of objectification and loss of personhood: poem, "The Coliseum" by Jim Ferris

"Professionalism": Jack Coulehan critiques current curricula in medical professionalism and discusses the hidden curriculum. "You Say Self Interest, I Say Altruism."

Difficult transition and ambiguous boundaries when medical student officially becomes an MD. Playing the role, assuming the role. Short story by Mikhail Bulgakov, "The Steel Windpipe"and Perri Klass’s introduction to Baby Doctor and essay from Baby Doctor, "Flip-flops." Klass’s essays include reflections on the interaction of personal and professional life and lead into Session 3.

Session 3. Physician perspectives on the overlap and conflict of personal and professional life; subjectivity, objectivity

Poem, "Falling Through" by Michael Jacobs.
Essay, "Language Barrier". Elspeth Cameron Ritchie.
Essay, "Heart Rhythms". Sandeep Jauhar.
Story, "Laundry". Susan Onthank Mates.
Poem, "Monday". Marc J. Straus.
Poem sequence, "The Distant Moon, I, II,III, IV". Rafael Campo.
Essay, "Fat Lady". Irvin D.Yalom

Week 2: personal/professional and patient/physician

Session 1. Discussion of The Tennis Partner by physician-author Abraham Verghese. A memoir of the author’s personal relationship with a medical student whom he is teaching. It is also a reflection on cultural marginalization and physician vulnerability.

Power relations and physical examination:
Poem, "Physical Exam". David Watts
Essay, "Naked". Atul Gawande
Story, "The Use of Force". William Carlos Williams

Session 2. Narrative and empathy

Rita Charon and Jody Halpern’s theoretical arguments that narrative competence and empathy are necessary skills for proper patient care.

Rita Charon. "The Patient, the Body, and the Self", chapter 5 in Narrative Medicine.
Jodi Halpern. "A Model of Clinical Empathy as Emotional Reasoning" (pp.85-94) and
"Cultivating Empathy in Medical Practice" (129-138) in From Detached Concern to Empathy.

Empathy versus sympathy: poem, "Save the Word". Thom Gunn

Physicians write empathy (crossing boundaries):
Poem, "I’m Gonna Slap Those Doctors". Jack Coulehan
Poem, "Red Polka Dot-Dress". Marc Straus
Essay, "Sleeping with the Fishes". Kate Scannell
Essay, "Learning to Care for Patients, in Truest Sense". Abigail Zuger

Session 3. Patient perspectives on empathy

[first paper due]

Memoir excerpt, "The Patient Examines the Doctor". Anatole Broyard. Broyard’s brilliant commentary argues for emotional engagement, however brief, as beneficial to both doctor and patient — written before the current discourse on narrative and empathy.

Story, "People Like That Are the Only People Here: Cannonical Babbling in Peed Onk." Lorrie Moore. Highlights the divide between medical policies and practices, and suffering patients and their families.

Essay, "Search for wholeness: the adventures of a doctor-patient." Tamara Dale Ball. Dual perspectives from a medical student who has diabetes.

Week 3: health/illness

Session1. Medical uncertainty
From physician perspective: Atull Gawande (essay). "The Case of The Red Leg."
Poem, "Gaudeamus Igitur". John Stone
from patient perspective:"What We Don’t Know" (essay). Gail R. Henningsen.
Poem, "Routine Mammogram". Linda Pastan

Problematizing normality

Essay, "The Meaning of Normal." Philip Davis and John Bradley.
Article, "Defining Disease in the Genomics Era". L.F.K. Temple, R.S McLeod,S. Gallinger, J.G. Wright
Essay, "What’s Making Us Sick Is an Epidemic of Diagnoses". H. Gilbert Welch, Lisa Schwartz, and Steven Woloshin. New York Times, Science Times, January 2, 2007.
Poem, "Much madness is divinest sense". Emily Dickinson. (No. 435)
Poem, "Monet Refuses the Operation". Lisel Mueller

Problematizing concept of race and race-based medicine

"How Culture and Science Make Race 'Genetic’: Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous" Celeste Condit.

Session 2. Social construction of disability
The Rejected Body: Feminist Philosophical Reflections on Disability. Susan Wendell.
Section from the Introduction: pp. 1-5.
Chapter 2. The Social Construction of Disability.

Poem, "The Magic Wand" by Lynn Manning.

Look at brief video ad online: What if the world had been designed exclusively for people with particular disabilities/impairments?

Turning the Disability Tide: The Importance of Definitions. JAMA, Jan 23, 2008. V.299, NO. 3, pp. 332-334. Lisa Iezzoni, MD and Vicki A. Freedman, Ph.D. (Iezzoni is a disabled MD on Harvard faculty)
"Medical Care Often Inaccessible to Disabled Patients." National Public Radio
"Blocked", by Lisa Iezzoni. Health Affairs, 27/1, 203-209 (Narrative Matters), 2008)

Session 3. Difference, rejection, "Otherness"
Susan Wendell. The Rejected Body, Chapter 3. "Disability as Difference."
Also, pp. 60-69 on Otherness
Optional: Chapter 4. "The Flight from the Rejected Body."

Artists represent physical difference
Matuschka Archive
Alice Neel self-portrait
Sculpture of a pregnant artist who lacks fully formed limbs: Alison Lappert Pregnant (by Marc Quinn)
Artist Laura Ferguson investigates and aestheticizes her own body, deformed by severe scoliosis.

Meaning and discussion of "neurodiversity"
Introduction to Songs of the Guerrilla Nation: My Journey through Autism, memoir by Dawn Prince- Hughes

Week 4: exile, illness, marginalization

Session 1: Exile and illness
Said, Edward W. "Reflections on Exile." Said’s classic essay on characteristics of exile and what can be learned from the exile condition.

Robert Pope. Illness and Healing: Images of Cancer. Artist Robert Pope chronicles the experience of cancer treatment, based on his own treatment for Hodgkin’s disease.

Poem, "Surgical Ward" by W. H. Auden. Inability of those who are well to imagine and identify with those who are ill or injured.
Poem, "Emigration" by Tony Hoagland. Illness as loss of country, a journey with no end in sight.

Online Frida Kahlo art that depicts her dual selves; her loneliness, isolation, stoicism, and resistance:
Self Portrait Between the Borderline of Mexico and the United States
Henry Ford Hospital
The Broken Column
Tree of Hope
Frida and the Miscarriage
Essay, "On Being a Cripple". Nancy Mairs. Incisive well-written essay about language, perception, attitudes surrounding disability-based on her early years with multiple sclerosis.

Essay, "Liv Ullman in Spring". Andre Dubus. Severely and permanently disabled in an automobile accident, Dubus gives a detailed and poetic account of his fears, loneliness, and the human connection provided by an empathetic listener.

Session 2. Marginalization
Story, "From the Journal of a Leper". John Updike. A sculptor who has psoriasis is obsessed with his physical appearance. As his condition responds to treatment, his art and relationships deteriorate.

Essay by Rafael Campo. "It Rhymes with ‘Answer’ ". Campo details how social and cultural marginalization became imprinted on his physical self.

Watch online video showing internalization of racism (3:25 - 5min): "A Girl Like Me."

Memoir by Jimmy Santiago Baca. Prologue, and chapter 8 from A Place to Stand: The Making of a Poet. Baca chronicles his alienation and despair, conditioned by a family history of social and racial marginalization, and how in prison he eventually was able to develop a sense of self-worth through self-education, cultural pride, and writing poetry.

Lee, Don. "About Gary Soto." Background of poet Gary Soto‘s early life in a poor working-class Mexican American community. Cultural loss and marginalization.
"The Levee." Gary Soto.
"Hand Washing". Gary Soto.

Story, "newborn thrown in trash and dies." John Edgar Wideman. Inevitability of a premature death.

Poem, "How to Write the Great American Indian Novel". Sherman Alexie. A clever satiric poem about how whites co-opted Indian culture, resulting in the metaphoric and actual disappearance of a people.

Susan Power. Short story, "First Fruits." Using actual history of the first Indian who was educated at Harvard University, this imaginative story by an author of American Indian heritage brings American Indian culture and contemporary American majority culture into harmony and preserves the cultural identity of the Indian protagonist.

Session 3. Film

[second paper due]

I’ve used several films over the years, most recently, The Station Agent.

Bibliography

Alexie, Sherman. "How to Write the Great American Indian Novel". In Native American Songs and Poems (NY: Dover) 1996, pp. 28-29.
Anzaldua, Gloria. Borderlands/La Frontera (San Francisco: Aunt Lute Books) 1987
Auden, W. H.."Surgical Ward". In The Collected Poems of W. H. Auden (Kingsport, TN: Random House, 1945)
Baca. Jimmy Santiago. A Place to Stand: The Making of a Poet (New York: Grove Press) 2001.
Ball, Tamara Dale. "Search for wholeness: the adventures of a doctor-patient." The Pharos. 54 (1): 28-31 (Winter, 1991).
Berlin, Richard. "Open You Up" by. In How JFK Killed My Father (Long Beach: Pearl Editions) 2004, p. 10
Broyard, Anatole. "The Patient Examines the Doctor". In Intoxicated by My Illness (New York: Clarkson Potter) 1992, pp. 33-58
Bulgakov, Mikhail. "The Steel Windpipe". In A Country Doctor’s Notebook (London: Collins and Harville Press) 1975, trsl. Michael Glenny
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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.

Health: Stories in the Service of Making a Better Doctor By PAULINE W. CHEN, M.D. Narrative medicine employs short stories, poems and essays to build empathy in young doctors.

October 25, 2008 at 11:20 am

Article on literature, narrative, and medicine, by physician author, Pauline Chen-withA a link to a "Well" blog that drew comments on the article.

My Story, Your Attention, Our Connection

September 25, 2008 at 4:10 pm

Patients waiting to see the doctor, with figures representing their fears.

Commentary by Deirdre Neilen, Ph.D., Associate Professor, Center for Bioethics & Humanities, SUNY Upstate Medical University, Syracuse NY, and editor, The Healing Muse

We are finalizing our eighth issue of The Healing Muse, and I find myself again caught in the web our poets and writers and artists are spinning. No matter that this is probably the eighth or ninth time I am reading their words or looking at their images. Each one springs before me as an entity, a being in search of something or someone to complete its quest for authenticity, its demand for understanding and mutual recognition.

As a journal dedicated to exploring issues of illness, disability, and medicine from all sides of those experiences, The Muse provides a unique forum for conversations and discussions that can seem difficult to initiate. When a diagnosis of cancer is given or when someone we know has a mental health crisis, we often have an initial sense of fear. We hesitate to say the wrong thing; we worry that our words might worsen the impact of the situation. We want to help, yet we too might feel the despair that lurks just behind the diagnosis. And inevitably, we feel totally and horribly alone. This isolation is one of the worst aspects of illness and medical treatment. The Healing Muse represents one poignant and powerful solution to this alienation; it can even open up a dialogue between patients and clinicians.

People have asked those of us who put together the journal if we don't feel overwhelmed by the sadness of the poems and stories. They wonder how we "market" The Muse. Who really wants to read about radiation or chemo treatments, about physicians who can't save patients, or parents who can't save their children? Does anyone honestly want to know that his doctor can feel inadequate and furious all within the same second?

Narratives and Medical Students

To answer these questions, let me don the other hat I wear at my university, that of humanities professor in the college of medicine. With one of my physician colleagues, I teach a humanities elective once a year that is open to our medical students, our nursing students, and students from two private universities in the city. We have taught Death and Dying, Images of Medicine in Film and Literature, and AIDS in Literature. Each time we teach, we are struck by the medical students' hunger for discussion about medicine's more hidden aspects: the dying process, the fatal prognosis, the side effects of treatments, the chaotic relationships that can accompany the patient, the ethical dilemmas that no antibiotic can answer.

It is within literature that their questions and their attitudes can begin to be answered and explored. When I bring them an essay, "The Bruising," by Dr. Thomas Gibbs which appeared in Muse 6, I am giving them the opportunity to watch a physician make the connection between his pregnant patient who will die from acute myelocytic leukemia and the death of his own mother from leukemia many years earlier. They see the physician "trying to prevent the panicked look" he sees in a young couple's eyes as he prepares to run the tests that will confirm his suspicions; they eavesdrop his interior thoughts as he realizes that this young couple had "walked into the room with a future" and suddenly everything is different. Our discussion centers on the physician as a bridge between the life they knew before and the unknown outcome awaiting them with treatment.

What intrigues the students and most readers I suspect is that Gibbs does not make the diagnosis his most powerful image or conclusion. He lets us know the ending is not going to be a felicitous one, but what emerges as the more important part of the story is how the young couple and the physicians and the nurses met this most unwelcome death. The wife expresses her husband's and her desire that everything be done to save her baby. The nurses make sure that the couple is given as much privacy and quiet time alone as possible. In addition to his regular visits, the physician asks the nurses to call him whenever there seems to be a change, good or bad, in the patient's condition so that he may provide whatever solace he can conjure. Once this leads him to a late night visit to McDonalds for a strawberry milkshake, the same kind he remembers bringing his mother when her lips were ulcerated from radiation. He recognizes that although so much more is known about the disease and so many more people have been helped, in this case, with this patient, he is again facing an indescribable loss. Thus, our physicians-in-training learn about bedside visits and about complementary treatments that won't be found on insurance forms or hospital billing codes.

And the students see that it is Dr. Gibbs who calls the code after the C-section brings a healthy son into the world a little bit before his mother must leave it. When he goes to the calling hours, Dr. Gibbs tells his readers that "obstetricians aren't supposed to lose patients" and confesses that is why he chose this specialty. But our students are learning that all physicians and all of us will stand at some point in the presence of death and how we handle that perhaps defines us in quintessential ways. In this instance, Dr. Gibbs and the nurses find themselves marking the anniversary of the patient's death each year with some poetry and some conversation. It has been 7 years now, and he sees this ritual as one of the ways we insist upon a recognition that we matter, that we were here only for a short time and yet we were loved.

If in our medical education, we are almost solely fixated on disease properties and drug and surgical interventions, we will not be prepared very well for those times when the black bag runs out of tricks, when disease proves more powerful than goodness or justice or mercy. Journals like The Healing Muse remind us that healing can occur even in the presence of bad outcomes and that good writing can, as Rafael Campo said, "make empathy for human suffering, if not entirely comprehensible, then at least clearly and palpably evident."

Patients Owning Their Narratives

When we do readings here in Syracuse or when we travel to other venues with The Muse in hand, we encourage our listeners to write for us too. We have found an enthusiastic audience in those who have experienced illness or who have cared for loved ones with illness. Their stories and poems can offer details that flesh out a patient's history or chart. In the poem "Shaking," for example, the reader learns that the speaker is not just a woman who suffers intermittent seizures after her brain surgeries but rather a mother who's concerned that these seizures are frightening her children. In sixteen short lines, she reveals her fear and her neurosurgeon's careless disregard of this fact as he mockingly re-enacts how her arms flail when an episode occurs. There is no more dramatic or concise way to convey the importance of listening to a patient; the students are as shocked as the patient when they realize that the physician has only scared the patient and furthered her isolation.

Our new issue includes an essay by a person who received electric shock treatments to relieve her depression. We enter her world and come away wondering as she does, is this truly the best we can do for each other? It is not only the treatment that her essay questions but the way we provide such treatment that makes us cringe. Her words and images are powerful testaments to the human spirit, and they connect her to us, bursting through the isolation her illness seemed to force upon her. Like the current running through her nervous system, her essay jolts us into awareness and dialogue. We see her, truly see her, and by the essay's conclusion, we know something important about her. And we wonder how much of this her clinicians know.

Some might think it ironic that medicine could use literature to return the profession back to its focus on the patient. Managed care and technology have pushed clinicians away from people and into numbers, statistics, and machines as supposedly more reliable gauges of health. The growing body of literature from physicians and lay people, however, shows that people are pushing back. We find in journals like The Healing Muse and in the columns of medical journals evidence that the desire for connection and the benefits derived from it are real and affecting.

"Tell me a story," a child says to a parent, and the magic begins. Later, the child will ask "Tell me a story about when I was little," or "when I was born," and again the weaving together of our past and present begins and helps to create our sense of self. We see ourselves reflected in the stories told by those who care for us, who love us. And when we are sick, our families want to tell our story to the doctors and nurses, to the therapists, to anyone who comes to give us the magic of the pill or the treatment. We believe that if they know us more intimately, they will care for us more carefully, and we will surely improve.

The power of language is such that it can introduce strangers and within minutes transform them into people who find themselves curious about each other, whose curiosity then compels them to go further into the story, and who finally may end up caring deeply about each other. Is this not a possible description for good medicine?

Buy two copies of the new Muse and call me in the morning.