Here I Am and Nowhere Else: Portraits of Care by Mark Gilbert at the Intersection of Art and Medicine

March 27, 2009 at 9:47 am

Oil on Canvas painting of man with disability in wheelchair with variety of  technologies to assist him

Commentary by Virginia Aita, PhD, William Lydiatt, MD, Mark Gilbert, BA (artist), Hesse McGraw, MA and Mark Masuoka, MFA

Introduction

AThe exhibition "Here I Am and Nowhere Else: Portraits of Care" explored 45 individual’s experiences with health, illness and caregiving. Three-thousand people attended the inaugural ten-week exhibition of the works that concluded on February 21, 2009 at the Bemis Center for Contemporary Arts in Omaha, Nebraska.A The exhibition arose from a qualitative research study that two of the authors, V.A. and W. L., designed with Scottish artist Mark Gilbert for his two-year residency at the University of Nebraska Medical Center (UNMC). The study, approved by the UNMC Institutional Review Board, included a number of stagesA from the design phase to the recruitment of patient and caregiver subjects, to Gilbert’s active drawing and painting phase, and finally to several stages of analysis and most recently to the exhibition of works.A The findings of the study will be published elsewhere, but we thought blog readers would be interested in knowing about the exhibition and how, as contemporary art, it played a role in helping exhibition viewers engage in an ongoing conversation about the nature of health, illness, care and the challenges, both professional and familial, of caregiving in our society. The exhibition included portraits of 25 patients from across the lifespan representing many varied situations on the spectrum of health and illness and 20 caregivers, both professional and familial.A The portraits served as a focus of conversation during the exhibition and a series of organized lecture-discussions about issues raised by the paintings. We describe below what transpired as we considered Gilbert’s large drawings and paintings that revealed obvious and subtle truths about health, illness, care and caregiving.

The Idea of Care and the Role of Contemporary Art

AOne of the important ideas that arose from the earliest analysis of the drawings and paintings of patients and caregivers was the idea that care is a non-instrumental, holistic process of personal engagement.A We also discovered that the boundaries of this engagement were not as defined as we had originally assumed-all human beings share in the experience of care and caregiving-sometimes as a patient, sometimes as a caregiver, and sometimes as both at the same time. This realization was further strengthened by patients’ willingness to participate in the study in order to "give back" so that others might learn from it.

As the exhibition drew closer, we knew that we wanted to explore the engagement that happens in the transfer of care between patients and caregivers.A To do this, we realized that framing the ideas we wanted to explore would be important.A At the same time, we wanted to encourage the public to join in the discussion.

To frame the important ideas, we invited the public to a pre-exhibition reception and evening of short background lectures the night before the actual gala opening of the exhibition at the Bemis Center for Contemporary Arts. The first brief remarks were made by project investigators about the origin of the project.A Following this, the Director of the Bemis Center for Contemporary Arts, Mark Masuoka, spoke on the role of contemporary art in society and in particular about the role of this exhibition in the on-going national discussion about health care.A He was followed by artist Mark Gilbert who spoke about his experience working as an artist-in-residence within a medical center with patients and caregivers. Finally, Emeritus, US Poet Laureate, Ted Kooser spoke about his experience as a patient featured in the exhibition.A Kooser then read a selection of poetry about his encounter with illness helping to focus the events that would follow during the exhibition.

The opening lectures set the stage for a series of three gallery discussions that took place every other week during the exhibition itself when we invited a speaker or panel of speakers to share with the audience their insights and experience about care relative to the drawings and paintings.A After each had spoken, the speaker(s) opened the discussion to the audience so that a give-and-take conversation about the topic could take place.A We held the lecture-discussions in the gallery itself, with the portrait works all around us.A Attendance varied between 80 and 150 participants.

The Lecture/Discussions

Patients and caregivers

For the first lecture-discussion on January 15, 2009, we invited a panel of patients and caregivers to talk about their experiences with the portrait project and we asked how it had influenced them in thinking about their roles, whether as a patient, a caregiver or both.A Two patient subjects spoke. One had undergone bariatric surgery for the purpose of health promotion while the other had been under treatment for brain cancer over a period of 10 years. Of the two caregiver subjects who spoke, one was a familial caregiver, the other a physician.A Panel members spoke about five minutes each about their experiences of being drawn or painted and then reflected on the meaning of it in their lives. The patients both stressed how the artist had succeeded in seeing them as whole people, not just physically but psychologically intact and the importance of that for effective care to take place.

Jove, a nearly blind African American, spoke about the importance of the project in helping to break down all kinds of barriers that prevent us from seeing, appreciating, and caring for another. The caregivers spoke about the impact of the project in helping them see and be responsive to the whole person (the patient). Dolores, Roger’s wife told of his belief in the importance of the project to help others overcome their fears of the ill.A He wanted to help care for others, even in his own debility caused by ALS so that they might learn more about the importance of personal engagement in care.A She said only as she understood the meaning of the project for her husband did sheA comprehend its importance and relationship to what she was doing in caring for him. The physician caregiver commented that the project had highlighted the importance of the bond that exists between patients and caregivers and had affirmed for him the importance of loyalty to the patients he serves.

Following these comments, we passed the microphone among members of the audience and many reiterated the importance of the relationship that exists between the ill and those who care for them-emphasizing that it is the relationship that is the heart of care as it unfolds in the doing of care.A Several people also raised the issue of how difficult it is both to be the recipient of care as well as the giver of care.A They spoke of our human condition that must yield to being both giver and a receiver of care, at different times or sometimes, at the same time.A Both roles are difficult and demand changes in who each is as a person, in personal identity, the topic of the second lecture -discussion.

Introspection

On January 29, 2009 Dr. Carl Greiner, a psychiatrist, spoke about the introspective nature of the portraits and what they imply about the nature of care and its relationship to personal identity. Walking from painting to painting in the softly lit gallery he engaged audience members in observing and explaining what they saw in the drawings and paintings. For example when he focused on one large almost 6’X6′ painting of the head of a bald young man nearing the end of his life despite chemotherapy for cancer, Greiner discussed what the audience’s observations implied about the patient’s psychological state and probable hopes, fears, and transformation due to illness.A This portrait is so compelling that it brought out psychological responses of audience members who articulated their own fears of cancer and death as they sat face-to-face with the raw truth of this young man’s life and imminent death.A In the communal and safe space of the gallery viewers engaged with others in the audience to articulate the most basic of human fears that were roiling within them. Greiner emphasized that the psychological and emotional states observable in the portraits and within us as viewers represent the common threads of our shared humanity.A When patients and caregivers interact in the transfer of care at such a level of shared, common experience, the identity of both is transformed.

Artist, curator, director perspectives

The final program on February 12, 2009 featured a panel with the artist, the curator of the exhibition, Hesse McGraw, and the Director of the Bemis Center for Contemporary Arts.A In this presentation, Gilbert spoke from the artist’s point of view, emphasizing the effect that the project had upon him.A Reflecting some of the discussion at Greiner’s presentation, Gilbert spoke of the difficulty he sometimes had in continuing with the work day-to-day, so powerful had its effects been for him as he worked with patients at critical times during their lives. The caregivers also had a profound effect upon Gilbert as he felt in some manner the gravity of the work they do. As the project proceeded he found that these challenges, far from being a hindrance, were to prove the driving force in the creation of the images. Gilbert spoke of the variety of powerful emotions and states of being that he was "privileged" to witness and tried to harness.

McGraw followed Gilbert and spoke from the curator’s point of view about presenting the work to the public. He pointed out that the portraits show the basic things that are needed to build a relationship in care such as trust and respect, but added that these portraits go far beyond that to tell intimate stories in a context of care. Using this idea, he then went on to ask those in attendance how the portraits might change our notions of what medical care in the contemporary world could be. AThen Masuoka spoke from the Director’s point of view about the role of contemporary art in highlighting and informing pressing societal issues, particularly health care. He said that art has the capacity to "kill" false assumptions that lead society down false paths.A He argued that this project, as contemporary art, has the capacity to inform viewers about what care is at a human level, and to inform viewers about what care should entail.

As we enter into a national conversation about healthcare reform, an exhibition such as this is important, he said, in helping the public to address what is critical to the enterprise.AA If the views of McGraw and Masuoka are valid, and we believe they are, contemporary art carries a heavy responsibility. Yet as the microphone was passed about the audience of more than 180 people, it was clear that audience members had engaged with these heavier questions about the role of health care in our society.A It was equally clear that for those in attendance, the most critical element of care is the human element.A This of course does not eliminate the need for the more technical medical and surgical aspects of care, but emphasizes that humane judgment in the doing of care is essential.

Conclusion

We have found our collaboration bringing contemporary art and medicine together to be extremely rich as both a research model and as an educational approach to explore the meaning of health, illness, care and caregiving. The exhibition of portraits of patients and caregivers and the related lectures and discussions about issues germane to the portraits have helped all who participated in these events learn a great deal. Our future plans are to tour the exhibition, along with an accompanying curriculum that can highlight important ideas that arise from it.A An exhibition catalogue is also available that includes reproductions of the artworks and essays written by the project originators, the artist, the curator and Bemis Director and others as well as by a select number of patients and caregivers all of whom provide varied perspectives. We are in the process of assembling a package that will allow the exhibition art works, curriculum, and catalogue to travel to other venues to be shared. For more information, please contact either Virginia Aita (vaita at unmc dot edu) AAAor the curator Hesse McGraw atA hesse at bemiscenter dot org.

Virginia Aita, RN, MSN, PhD is Associate Professor in the College of Public Health, Department of Health Promotion, Social and Behavioral Health, University of Nebraska Medical Center (UNMC), Omaha, Nebraska

William Lydiatt, MD is a Professor of Head and Neck Surgical Oncology at the Nebraska Medical Center, UNMC, and Nebraska Methodist Hospital, Omaha, Nebraska

Mark Gilbert, BA completed a 2-year Artist’s Residency at the University of Nebraska Medical Center, Omaha, Nebraska and currently practices art in Glasgow, Scotland

Hesse McGraw, MA is Curator at the Bemis Center for Contemporary Arts, Omaha Nebraska

Mark Masuoka, MFA is the Director at the Bemis Center for Contemporary Arts, Omaha, Nebraska

Acknowledgements:A We wish to thank the following for their support of the exhibition, associated program and catalogue:

The Nebraska Medical Center
The Division of Head and Neck Surgical Oncology in the Department of Otolaryngology-Head and Neck Surgery
The College of Public Health
Omaha Steaks
The Nebraska Arts Council
The National Endowment for the Arts

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.

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!

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.

Trekking And The Medical Humanities

September 13, 2008 at 10:35 am

Trekking through the Himalayas

Commentary by P. Ravi Shankar, M.D., Department of Medical Education, KIST Medical College, Imadol, Lalitpur, Nepal

 

Nepal, trekking, and new perspectives

In a previous commentary for this blog I wrote about the development of medical humanities modules in two Nepalese medical schools. In this article I aim to pen my thoughts about trekking in Nepal and the Medical Humanities (MH). Nepal is a small country in South Asia surrounded by two of the most populous countries in the world - China and India. Nepal has among the greatest altitude variations of any country on Earth. The land rises from the flat plains of the 'terai' to Mt. Everest, the highest point on the planet within a distance of 150 km. The hills and the mountains of Nepal are a trekker's paradise and attract people from a number of countries. The unspoiled villages, green hills, verdant valleys and soaring Himalayas are the major attractions. The present population may be somewhere between 27 to 30 million. A number of ethnic groups inhabit the land and more than 500 different languages and dialects are spoken.

How can trekking be related to the humanities? On first glance these two appear very different. MH is an intellectual activity and is pursued by medical students, medical teachers and others to obtain a perspective on the human and humane side of medicine. Trekking is a tiring physical activity where you tramp up and down hills, cross streams and endure cold, heat, sweat and grime. Trekking basically is about freedom and following a simpler and gentler way of life at least when you are on the trek. Karl Benz's motor car is absent and the gently rising middle hills with their river valleys have to be traversed on foot. The air is pure, the light magical, the people friendly and you have stepped back a few decades in time! You follow the rhythms of nature. You go to sleep soon after sunset and wake up with the first light of dawn or even before. Many of the illnesses of civilization are the result of leading a lifestyle not in tune with nature's clock. MH in my opinion searches for the simple in disease and health. This is becoming a difficult task in an increasing complex world and trekking may be of some help!

The landscape can stimulate creativity among the students and inspire them to reflect on life, relationships and death from a 'different' perspective. Also exposure to the legends, voices and rich oral traditions of the mountain villages can enrich the writing and other creative skills of students and faculty. These stories, paintings and other art objects can serve to explore a number of issues in the humanities.

Medical humanities retreats

Trekking regions could be a location for weekend MH retreats. In the Dalhousie University, Canada, weekend retreats in the beautiful Canadian countryside are common during the MH module. In Nepal, the trekking areas can serve a similar function. Cities like Kathmandu and Pokhara have the Langtang/Helambu and the Annapurna trekking regions at their door step and students and faculty can easily trek to some of the nearby villages. Many other cities in the plains also have hill towns nearby. The trekking regions have over the years built up good infrastructure and facilities. Sitting in the dining room of a lodge by a roaring fire as the mist settles in for the evening can be a delightful experience for students and faculty and can lead to a closer and more informal relationship between them. The student-teacher relationship is relatively hierarchical and authoritarian in Nepal and trekking can lead to a more egalitarian and friendly relationship that may be more conducive to learning the humanities.

A cultural and social journey

Most treks in Nepal start in the middle hills though these days roads are making greater inroads. The road head is usually a congested and noisy small town and you can study a village slowly urbanizing. An interesting phenomenon with MH implications! People may either trek alone, with a porter or with a group. The porter is usually a farmer from the hills and it is an interesting experience to walk along this person for days on end. You are offered a different perspective on life and the country! Trekking in a group can also introduce you to other members from a different region or even from a different country.

The middle hills are welcoming with bright sunshine and villages mainly inhabited by the Brahmins and Chettris, the dominant castes in Nepal. Education is becoming more widespread and you can watch children race along the trail to their schools, the same steep trail where you rest and catch your breath after every two steps. As you go on the valley gradually becomes narrower and the river flows through a deep gorge and the terrain becomes increasingly rocky. Magnificent waterfalls and dense forests create an enchanted atmosphere. The going is tough but the reward is great! After a few days travel you reach the dry Tibet-like valleys behind the Himalayas. These are mainly inhabited by Bhotia communities of Tibetan extraction. This is a classic description of the Around Annapurna, Around Manasulu or even the Everest trek from Jiri. However, you can also fly in to a remote airfield and then start your trek. There are also shorter treks for those short on time.

Difficulties in accessing health care, and the modalities followed by the inhabitants to cure disease and protect health are important issues for the Medical Humanities. Because of the mountainous terrain, the volatile and unstable political situation with its prolonged conflict and poor socioeconomic development, modern health care may sometimes be many days walk away. Complementary Medical practitioners and faith healers often fill in the yawning gap for health care. Thus complementary medicine, rising standard of living, increasing number of trekkers and access to medical care are closely interlinked.

Access to health care, standard of living, and complementary medical systems

Many of the villages are situated one or two days walk from the nearest road head and to reach them you have to walk up and down winding trails through the hills. You can see first hand the important role complementary practitioners play in providing health care. Sick persons are also often carried in baskets on the back of sturdy village porters to the nearest health centre or hospital. The basket is often called the 'hill ambulance'.

The main trekking areas have seen a rise in the standard of living along with westernization and a change in the outlook. The approach to illness and its treatment is also changing. Western medicine is being more widely accepted and westerners (even trekkers) are regarded as doctors and experts in modern medical care. The farmers are able to supplement their income through the cash earned from trekkers and the traditional subsistence village economy has been replaced by a cash one. The overall health status has improved but the diseases of civilization are slowly beginning to make an appearance.

In the middle hills, Hinduism is the main religion and ayurveda and herbalism are the main medical systems. Faith healing is also common. In the gorges, the Buddhist influence becomes stronger and shamans become the main faith healers. In the trans-Himalayan valleys, Tibetan medicine dominates and the practitioners called 'amchis' cater to the healthcare needs. Modern allopathic health centers and hospitals are also present in a few areas mainly manned by paramedics. The process of creation of an indigenous medical system, its interaction with other medical systems and with western allopathic medicine (which came from the cities) can be a fascinating subject of study. The complementary systems offer a different perspective and while not always scientifically rigorous like the allopathic system may be more holistic considering man in the perspective of the cosmos.

Progress made

In the recent decades tremendous progress in healthcare indicators and access to health care has taken place. Education is becoming widespread among the younger generation. The importance of clean drinking water, sanitation, proper sewage disposal is becoming evident to the rural and the underprivileged urban populace. A number of health centers, health posts and subhealth posts (institutions delivering primary health care) are being set up and both doctors and paramedical workers are looking after the health of the population. Community hospitals and dispensaries have been set up in many areas and good quality medicines are being manufactured in the country. Nepalese manufacturers now meet more than 40% of the country's requirements and this proportion will increase in the future. Students can see first hand these changes in the rural areas of Nepal. These changes are also present in urban areas but are more dramatic and easier to study in the rural areas.

Humanities issues of particular concern to Nepal

The major humanities issues of particular concern to Nepal in my opinion are to encourage a caring attitude towards patients, taking into consideration the patients’ weak socioeconomic conditions in treatment decisions; help patients make proper decisions about treatment and health care; promote service in rural and underprivileged areas; play a role as a motivator and an agent of change in rural communities; develop good working relationships with complementary medicine practitioners and involve them in making healthcare accessible to the underprivileged; and adapt western allopathic medicine to a traditional setting. Many of these issues may also be applicable to other countries in South Asia.

Thus trekking can serve to introduce, highlight and underline a number of MH issues in the Nepalese context. The exposure to fresh air, fresh food and an unhurried pace of life can do wonders for the mental and physical health of the students and faculty. The unhurried environment allows for deep reflection and in depth study of a number of issues. Thus trekking and the humanities may be closely related in the Nepalese context. The challenge is to explore and utilize the connection to the full!

An Initiative in Narrative Professionalism

May 23, 2008 at 10:45 am

A pair of round glasses on a sheet of writing, Wellcome Library, London, Photograph 2004
Commentary by Jack Truten, Ph.D., Visiting Assistant Professor, Department of Humanities at Penn State College of Medicine at Hershey; Chair of the College of Physicians of Philadelphia's Section on Medicine and the Arts; consultant in medical ethics and professionalism

Background

I've made education in medical professionalism my business in recent years. Frequently, I hear and read that there's a crisis in medical professionalism, that trust in doctors has eroded because medical technology and other interventions or intrusions have insinuated themselves into the sacred space between doctor and patient and, further, that doctors are seen to have been complicit in this infidelity. My purpose in this entry is not to investigate this claimanor to refute or defend itabut to describe one way to address it by offering a retrospective account of the first-year experience of setting up a medical humanities-based program in professionalism principally for house staff in a major academic medical centeraa program that was at its inception more start-up than pilot and is now more toddler than infant.

A few years ago, during my Fellowship experience in Clinical Ethics and Medical Humanities at a community academic hospital, I found that as I participated in clinical rounds and rotations, education modules and ethics consults, my presence was like that of an unwitting Trojan horsea singular, but unthreatening enough to attract unguarded disclosures from clinicians of all stripes about the tribulations and satisfactions of clinical practice. Most often, the tales I heard were of the crushing weight of workplace stress and the burnout and compassion fatigue it engenders. I also heard tales of less than ideal care-team cohesion and inter-professional tensions. It occurred to me that professional conduct is most likely to be found in those clinicians who have a strong and well-defined professional identity and that self-care is an important constituent component of such an identity. I had already received foundational training in Narrative Medicine at Columbia University and so decided to implement a twice-monthly on-site, in-unit program in "Narrative Pediatrics" for an inter-disciplinary group of NICU and PICU staff. Now supported by unit leadership and some modest funding, this program is still in place and working to diminish some of the suffering and struggles that are captured in the narratives produced and exchanged.

A little over a year a year ago, I gave a talk at the University of Pennsylvania, describing this Narrative Pediatrics program. Afterwards, I spoke with one of the Vice Deans in the School of Medicine there and we reached an agreement to develop together a "Narrative Professionalism" initiative for house-staff at Penn, convinced that a small group approach to professionalism education would be more effective than large, didactic lectures. Start-up challenges were predictable enoughabuy-in from faculty and departmental leaders, finding time in an already densely packed GME curriculum, and securing even modest funding. Working with only a few residency programs at the beginning of the year, our initiative incrementally expanded to the point where now, almost all clinical departments have taken part to varying extents, with some residency programs finding time to incorporate only two one-hour Narrative Professionalism sessions for residents per year into existing conference time, while other programs have signed up for three or four sessions per year, some featuring ninety-minute sessions. Growing interest in this program, meanwhile has led to the establishment of separate Narrative Professionalism sessions for fellows, for researchers and in seven individual ICU's for interdisciplinary groups. Currently under consideration is the establishment next year of similar sessions for new attending physicians and for inter-service or inter-departmental groups.

The program at University of Pennsylvania

The approach we have devised for house-staff education in professionalism begins first with a training session for the Program Director and other faculty interested in co-facilitating these Narrative Professionalism resident groups. In this one-hour introductory session, I explain the central concepts of Narrative Medicine and then enact for this faculty gathering a dress rehearsal of a typical residents' group where for the first ten minutes of the session, participants are asked to write informally about an episode from their clinical experience that somehow captures a professional predicament or success. For the remainder of the session, participants are asked to read these short narratives aloud, giving others an opportunity to listen and collectively to interpret the significance of what they heard. Resident sessions themselves are then co-facilitated by a trained faculty member and by me or one of my associates. Writing assignments are carefully and progressively sequenced such that in the first meeting, the question is Write about an occasion when you witnessed medical professionalism at its bestaor, alternatively, at less than its best …and in the second, Write about an occasion when your own professional identity took a hitaeither in your own eyes, or those of someone elseaor, alternatively, an occasion when it was strengthened or affirmed. Subsequent sessions can address specialty-specific professionalism concerns. Certain rules of engagement apply in these groups and are stated explicitly each time: that this is a safe and confidential context for full and open disclosure, with no outside revisitations or recriminations and that in these narrative exchanges, we're aiming not so much for solutions to particular problems but for shared insight into the constituent components of professionalism and its conduct.

Aspects of the devised approach that appear to work well are, first, the presence of a faculty facilitator who is willing to write and share his or her own narrative of professional challenge or resiliency, the presence of a neutral second facilitator with narratological expertise, and the applied principles of adult learning that invite participants to bring to the table their own understanding and experiences of the scope and nature of professionalism. Some themes and insights typically generated by residents' narratives include: the fragility of one's professional reputation, the pressure of high institutional expectations and standards, inter-professional/intra-professional/inter-service tensions, emotional engagement with/detachment from patients and families, and the realization that professional behavior, like ethical decision-making, is often situation-specific and context-dependent. Expressed satisfactions, meanwhile, typically refer to a sense of professional peer-group belonging, to inspiring mentors, and to the overall privilege of practice. Other dividends of the Narrative Professionalism approach are that the acts of writing and interpretation automatically enact reflective practice and that residents can develop a certain narrative competence that can, in turn, inform patient interactions as well as diagnostic and treatment decisions.

The response

Professionalism in the practice of medicine is notoriously difficult to measure and our participant evaluation data are at this point still being gathered. Resident evaluations of these Narrative Professionalism sessions from the beginning have been overwhelmingly positive, with characteristic requests for more time and greater frequency of sessions. The three core questions on the standard evaluation form ask participants to assess first, to what extent this narrative exchange experience was beneficial to their personal sense of professional well-being/resiliency, second, to what extent this narrative exchange experience was beneficial to their professional sense of team cohesion/affiliation and third, to what extent this narrative exchange experience will enhance their ability to deliver high quality care and treatment for patients and families. In preparation for a second, more established year of the Narrative Professionalism program at Penn, I plan to attend the forthcoming inaugural Advanced Narrative Medicine training workshop at Columbia University where refining instruments of program assessment and measurement will be a focused priority. With the ACGME's (Accreditation Council for Graduate Medical Education) designation of professionalism as one of the six general competencies that residency programs are required to teach, much remains to be attempted and accomplished in professionalism education: Narrative Professionalism is one efficient, cost-effective, and rigorous medical humanities approach that takes fully and properly into account the artistry of professional conduct in the medical workplace.

Medical Humanities: Sowing the Seeds in the Himalayan Country of Nepal

April 14, 2008 at 4:43 pm

Composite Nepal Photgraphs by P. Ravi Shankar
Commentary by P. Ravi Shankar, M.D., Department of Medical Education, KIST Medical College, Imadol, Lalitpur, Nepal

Nepal, a country in the lap of the Himalayas is still predominantly agricultural. The majority of the festivals and cultural events have a strong correlation with the planting and harvesting of rice, the principal crop. With the hard rocky soil and the lack of suitable flat land it is difficult to cultivate crops in Nepal. Agriculture like in most of South Asia is a gamble dependent on the vagaries of that great seasonal phenomenon, the monsoon. Adequate rainfall at the right time is the major determiner of whether the sown crops will yield a good harvest and can mean the difference between eating well and going hungry. I was taking a similar kind of risk with an initial voluntary Medical Humanities module in the Himalayan country. Whether I would be successful at the end of the day depended on a variety of factors, the chief one being the enthusiasm and interest of the participants.

The PSG-FAIMER Institute

It was early January 2007 when I came to know about the PSG-FAIMER regional institute in Coimbatore, India through one of my good friends. PSG is a charitable group who run a number of educational institutions in Coimbatore, India and FAIMER is the US-based Foundation for the Advancement of International Medical Education and Research. The institute was inviting applications for a part-time fellowship in Medical Education and was inviting an outline of curriculum innovation projects from potential fellows. I have always been interested in medicine from a ‘different’ perspective. I have a keen interest in the history of medicine and am also interested in literature and creative writing. I am a keen trekker and photographer and have spent many weekends and vacations in the delightful trekking areas of Nepal. Most of my contemporary fellows (mainly from India) had chosen projects well within the confines of the curriculum. However, I wanted to do something that pulled together my interest in history, literature, and art within the framework of medicine, something along the lines of what is called Medical Humanities in the west." I discussed my proposed curricular innovation with Dr. SK Dham, dean of the Manipal College of Medical Sciences in Pokhara, Nepal, and he was very supportive. I decided to submit my project and hope for the best.

The first on-site session

It was a delightful experience to receive the e-mail from the institute confirming my selection. The first on-site session was to be held in mid-April at Coimbatore and I set about working on the project. At Coimbatore we were taught about project planning, force-field analysis, concept maps and looking at the project in a structured fashion under various headings. The overall attitude towards my slightly novel project was positive though there were occasional suggestions to choose a more conventional subject. The food at Coimbatore was a delight and I could not have enough of idlis, dosas, upma and other South Indian delicacies.

Initial days of the project

On coming back to Pokhara I started work on my project in earnest. The first task was to obtain feedback from the stakeholders and design a curriculum. One of our faculty members at PSGFAIMER was Dr. Janet Grant of the Open University, United Kingdom and she was kind enough to send me material on curriculum design. For a long time I had been intrigued by a feature in the journal Academic Medicine titled ‘Medicine and the Arts’ (MATA). I wanted to contribute and wrote to Ms. Anne Farmakidis who was in charge of MATA at that time about how I should go about writing a MATA article. She gave me a few hints and was kind enough to send me a copy of the book titled Ten Years of Medicine and the Arts. The book’s a compilation of MATA articles published over the years from 1991 to 2001. The book was a delight to read and I was hooked! This book was also a key factor in strengthening my interest in the medical humanities.

Preparing for the module

The module I was planning was voluntary so maintaining participant interest was the key! I had noted that in many courses of study in South Asia the objectives are not clear. I resolved to put down the objectives of each session on paper in black and white. Ironically I ended up with clearer objectives for a ‘soft’ course like Medical Humanities than for courses like Anatomy or Pharmacology! I also set about constructing a student guide, a facilitators’ guide, a guide to further reading, and session descriptions. A major question in my mind was how many sessions should be conducted. I wanted the module to serve as an introduction to the fascinating topic of medical humanities. As part of the course I was in touch with my friends and faculty at the PSGFAIMER Institute through a listserv and we started discussing how to go about our respective projects. We also cover various topics related to health sciences education every month. As medical humanities is not well developed in South Asia I got in touch with various medical humanities educators from other regions through e-mail. All were gracious enough to respond and offer their suggestions. All wanted to help kick start medical humanities in a developing Asian country. I owe a special debt of gratitude to Dr. Johanna Shapiro of the University of California at Irvine, Dr. T. Jock Murray of the Dalhousie University Faculty of Medicine, Canada and Dr. Tom Tomlinson of the Michigan State University in US. My friend, Dr. Rakesh Biswas was also very helpful.

Learning modalities

I finally decided to conduct fifteen sessions divided into three units titled Medicine and the Arts, Ethics and Medicine, and Contemporary Issues in Medicine. There were also home assignments. A major goal of the module was to make learning fun and avoid the heavy, boring didactic teaching which is in vogue in most of South Asia. Learning sessions were to be conducted in small groups and were to be activity based and interactive. Literature and art excerpts, role plays, case scenarios were among the different modalities used to explore various aspects of the humanities. Medical humanities was not widely known and it was up to me to popularize the term and what it meant. MCOMS has two campuses with the basic science campus being located at the scenic and wooded Deep Heights in Pokhara. The students run a wall magazine called Vibes and I often contribute to this delightful magazine. (A wall magazine is like a notice board and various articles and features are put up on the board. The contents are changed regularly and a particular collection of articles and features constitutes an issue.) I wrote an article about medical humanities for Vibes.

Sources of literature & art

For the module I mainly used literature and art excerpts from a western context. I was able to use a couple of excerpts from South Asian authors in the module. Photos of the violent conflict in Nepal were used and the majority of the participants could easily relate to this. A major difference between America and Nepal is that in Nepal, like in most of South Asia the student-teacher relationship is authoritarian and hierarchical. I had to make sustained efforts to get the students to open up. The case scenarios and role-plays were designed by me to reflect various aspects of the practice of medicine in Nepal and south Asia and were well received by the participants.

Canvassing for volunteers

I started canvassing support among the students of the clinical semesters. In Nepal the undergraduate medical course is of four and half year duration and is divided into nine semesters. The first four semesters are devoted to the basic science subjects and the last five to the clinical ones. Initially I concentrated on the fifth semester as the students had just entered the clinical phase and were the most ‘free’ batch of learners. However, the fifth semester also runs a program to help the poor patients of the hospital — the socially aware and active students were active in the poor patients’ fund and had no time for medical humanities. I then turned my attention towards the sixth semester. I started canvassing among faculty members to join. My colleague, Subish is keenly interested in the more rational use of medicines and other issues as well; he enthusiastically participated in the module. He was instrumental in providing the excellent facilities of the Drug Information Center Conference room for the sessions. The room helped to create a relaxed, protected and comfortable atmosphere.

Initial days of the module

The initial sessions were a touch and go affair. People kept coming to the sessions and dropping out. Some of them were irregular in attendance, attending scattered sessions. Gradually word spread about the unique module. Participants started coming and staying! A sixth semester student came to test the waters; she found it was to her liking and more of her friends joined. One of my colleagues, a physiologist, trekker, artist, photographer and many other things besides was an enthusiastic participant. My clinician friends were generous in sharing their rich clinical experience as co-facilitators. Another colleague had done his doctorate in Denmark, where, as in most of Europe, it is expected that medical and other health science students know some philosophy. With his help I started a ten minute discussion on philosophy during the module. One of my students then in the final year of medical school asked me to contribute an article about medical humanities for the college magazine, Reflections which they bring out.

Sessions for the Basic Sciences

The students in the Basic Science campus requested me to conduct a module for them. It was difficult to find a time period convenient to both the parties and finally we settled on the lunch break. It was indeed gratifying to note the enthusiasm of the participants. This module was conducted along the same lines but each session was divided into ‘bytes’ spread over three working days.

Novelties of the module

The module introduced a few new concepts and also further developed certain others which I had been using in my small group sessions for students. Constructive formative assessment, reflective writing assignments, assessment of the facilitator and faculty and students learning together were a few of them.

Module at KIST Medical College

At present I am conducting a module for faculty members at the KIST Medical College and these members could be used as co-facilitators for future sessions. I really enjoyed being a part of Humanities 101 and I am sure my student and faculty participants did too. I sincerely hope the seed of medical humanities will take root in the fertile soil of Nepal (among the highest countries on Earth) and bloom among young, energetic and impressionable minds!

What Is Medical Humanities and Why?

January 25, 2008 at 11:25 am

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

"Medical humanities" is one of those I-know-one-when-I-see-one terms. Taken literally, the two words have about the same level of specificity as would "medical sciences," which includes everything from biochemistry to pathology. No wonder our scientific colleagues press us to give a more precise definition or, even better, an accurate description of just what we are trying to accomplish in medical humanities curricula. Unfortunately, believers tend to assume that our colleagues might easily understand the importance of medical humanities, if only they opened their eyes and adopted a different paradigm. In my experience only underdogs and fuzzy thinkers ever talk about paradigms.

To me it's surprisingly difficult to say with any degree of clarity what medical humanities is. It certainly isn't the medically relevant content of allaor most, or for that matter, anyaof the traditional humanities disciplines. We don't engage literature, history, philosophy, anthropology, religion, and so forth in any substantive way. While we do, or should, teach bioethics content in some depth, medical humanities folks often recluse themselves from bioethics as such. Yes, we dabble in literature, and more generally, narrative. History plays a role and sometimes theater and film. But what else? Does humanities include communication skills? Or spirituality? And what about more traditional stuff like medical sociology?

Medical humanities relates to, but is not identical with, the art of medicine, for which nowadays we often use the word "doctoring." Doctoring requires communication skills, empathy, self-awareness, judgment, professionalism, and mastering the social and cultural context of personhood, illness, and health care. Learning doctoring includes a process of character formation that requires years of role modeling and guided practice. We base our claim for the importance of medical humanities on the assumption that our teaching contributes significantly to the development of doctoring skills. However, a moment's thought should tell us that physicians of the past must have learned these skills without studying such a discipline, and many continue to do so today. Thus, whatever medical humanities is, it's not a sine qua non for professional formation.

The claim that medical humanities curricula help our students become better doctors has another interesting aspect. Our use of the term "better" suggests a practical moral dimension, i.e. young physicians will care for their patients more effectively, if they study medical humanities. However, although humanities disciplines once counted moral education among their goals, they no longer do so. Today you don't study history or literature to become a better person. So, from an academic perspective we appear to be way off-base when we co-opt these disciplines for a practical moral goal not shared by their "mother" departments. This makes defining what we're doing even more confusing.

Despite all this, medical humanities feels right. As with any new field, it's full of enthusiastic advocates who aren't afraid of rocking the boat. At present medical education is a patched-up old hull that could sink at any time. Boat rockers are important to help convince the rest of us that we better get to the shipyard quickly and find ourselves a new model. I suspect that humanities educators who succeed at this do so because they are sensitive and thoughtful people who care passionately about medical education and not because they know a lot about philosophy or literature. Medical humanities also points the way toward remedial education in habits of the heart. Nowadays, our culture disvalues liberal education, is skeptical of virtue, and, in particular, glorifies self-aggrandizement over altruism. Thus, today's medical students usually lack a liberal education and often a belief in virtue. These factors make them more vulnerable to a culture of medicine that reinforces egoism, cynicism, and a sense of entitlement. Medical humanities (whatever it is) may assist students in resisting these negative forces by opening their hearts to empathy, respect, genuineness, self-awareness, and reflective practice. As John Gregory wrote, "A gentle and humane temper, so far from being inconsistent with vigor of mind, is its usual attendant; rough and blustering manners generally accompany a weak understanding and a mean soul…" 1

1.Gregory J. Lectures on the Duties and Qualifications of a Physician. London, W. Strahan and T. Cadell, 1772. Reprinted in McCullough LB (Ed.) John Gregory's Writings on Medical Ethics and Philosophy of Medicine, Dordrecht, Kluwer Academic Publishers, 1998, p. 182.

Further Reflections on Medical Humanities

December 22, 2007 at 3:32 pm

Left and right brain function
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

 

The intriguing musings of Brian Dolan on this blog (Medical Humanities: Education or Entertainment?) and the incisive comment by Schuyler Henderson inevitably provoke further reflection on the medical humanities and what they are doing in medical education. I would like to add, somewhat discursively but I hope ultimately relevantly, to the discussion as follows.

In his inaugural speech as first president of the Czech Republic after the so-called Velvet Revolution brought about the downfall of communism, Vaclav Havel, also an internationally renowned poet, reflected on how new societies must be built. (1) He observed that everyone was looking toward the new government to tell them what to do, to lead them into a new way of living and a new way of being. But Havel claimed that the established political and institutional structures were unavoidably compromised, having been constructed during, and based on the assumptions and priorities of, the communist dictatorship. The people could not rely on existing bureaucracies and institutions - what already was - for guidance. Instead, they had no choice but to turn to each other. Stumbling and staggering, they would have to risk building a new world together.

Now I am not suggesting that the current medical education establishment is a communist regime; nor that medical humanities represent the voice of a people seeking liberation and freedom. Metaphor has its limits; and six years later, Havel acknowledged that although societies need to listen to poets as much as bankers or stockbrokers, the world cannot easily be transformed into a poem. (2) However, I do believe there are instructive implications to be gleaned from Havel's call to a populist-based rethinking of common assumptions in terms of ongoing debates about medical education and medical humanities.

Specifically, one of the things we learn from Havel's speech is that it is very difficult for any institutionalized power structure to change itself. The institution of medicine is deeply rooted in certain mechanistic, linear, positivist, objectivist, and reductive assumptions that are expressed every day in the ways physicians behave and the system as an entirety works; and which make it difficult to see the humanities as anything other than, at best, a nice but not essential, part of medical education; and at worst, pretty much a waste of time. Even if institutionalized medical education "makes room" for the humanities, it will do so on its own terms. This is not necessarily bad, but it is also not necessarily sufficient. As a particular instance of this difficulty in expanding its parameters, I will offer the example of "rigor" vs. "entertainment."

A pervasive criticism of the humanities among basic scientists and many clinicians as well is that they are a "soft" endeavor, a pursuit falling entirely outside the realm of science. The implication is that, therefore, they have little or no place within a scientifically-based profession such as medicine. The demand from the existing power structure of medical education is that the humanities justify themselves as a "rigorous" discipline; and many within the humanities are only too happy to attempt to comply.

Now, anyone who has sat through a course on postmodern literary theory should have no doubts that the approach taken by the academy to the humanities can be as intellectually rigorous as any course in biochemistry or pathophysiology. However, perhaps this is not the point, or at least not the most important point. No one would deny that one of the potential contributions of the humanities is to develop in its students the fostering of critical reasoning and judgment based on close observation of textual evidence and lucid argumentation in support of such. But is that the main reason the humanities are part of medical education?

We can discover one possible answer in Margaret Edson's play, Wit. (3) Here we see the fiercely intelligent scholar Vivian Bearing coming up against the limits of intellect in her struggle against ovarian cancer. It is not that her brilliance is irrelevant, but that it can carry her only so far in her journey toward death. What she needs at some point is compassion, empathy, nurturance, and caring (stereotypically embodied in the nurse Susie). The play in its entirety conveys the realization that intellect unaccompanied by love is lacking in the face of suffering and death.

How does this lesson pertain to the question facing teachers of medical humanities regarding the relevance of their discipline to medicine? One possibility is that we should not feel constrained to argue the issue solely on the grounds chosen by the medical education establishment. As outsiders in the culture of medicine, humanities scholars understandably feel the need to gain credibility and legitimacy. Also understandably, they believe that they can best do so by accommodating to this system's rules: e.g., set behavioral objectives, define skill sets, identify competencies, quantitatively measure impact. There is nothing terribly wrong with taking this approach. But I question whether following rules promulgated by the basic sciences adequately conveys the richness, complexity, and yes ineffability that the humanities have to offer medical students.

No one disputes that rigor, cognitive discipline, and the development of intellectual faculties should be stimulated at all levels of the academy, equally in biochemistry and in a class on pathography. But is intellectual rigor the only thing that matters in this debate? No one wants to water down their discipline, least of all "outsiders" accused of softness and marginality. Because humanities scholars in these settings are not training other humanities scholars, but physicians, the goals and emphases of their teaching must be different. To my mind, the issue is not dumbing-down or watering-down, but essentializing, focusing on the heart of the humanities that is of real value to the physician. This may be defined in part by "rigor," but as Wit suggests, it may be defined according to other criteria as well, if we choose to do so.

I do not think that, at this moment, we have agreement on what should comprise this essential humanities core. But it is clear to me at least that the great, unique power of the humanities lies in their capacity to engage the emotions as well as the intellect, to move the heart while provoking the mind. In this regard, the humanities are supremely relevant to the education of physicians, because this balance of intellectual steadiness and emotional tenderness (in the words of Jack Coulehan) is exactly what is required of them in every single clinical encounter. (4) Emotionally connecting with (as opposed to simply intellectually comprehending) issues of multiple perspectives, ambiguity, complexity, failure, suffering, commitment, and devotion (to mention only a few) cannot be avoided in medicine, and can only be learned through engagement with the humanities in some form or other.

And this brings us to Brian Dolan's speculations about "entertainment." Suppose medical students' exposure to the humanities is not always "rigorous"? Suppose it involves attending the above-referenced play Wit; or strolling through a museum; or writing a poem? Suppose the humanities do, at times, "entertain" their students? Who is to say that it is not through "entertainment" that equally important educational experiences can occur? We in medical education should be exquisitely aware of the power of the hidden curriculum, a curriculum that technically does not exist at all, yet shapes student attitudes and values more strongly than any formal course. (5) The method of delivery should be just that - a means to an end. It is because we are often not clear on what we really hope to achieve with our medical students in bringing them into with the humanities that we focus so obsessively on whether our teaching sufficiently conforms to the "rigorous" standards of other aspects of the curriculum.

Humanities are a way to teach people to think about, understand, be moved by and engage with the human condition. If we can accomplish this end, in ways that are rigorous, or entertaining, or both, we will be on the path to creating a new "society" of physicians, who look at patients and doctoring very differently than the present generation. In doing so, we cannot rely on the educational institutions in which we find ourselves, because they were created out of modernist, Flexnerian assumptions about the nature of health, illness, and medicine. We must rely on each other, on communities of individuals, comprised of humanities scholars, clinicians, and even basic scientists who share certain visions and aspirations for healthcare, and who are willing to risk teaching in ways that honor the full potentiality of the humanities in medical education.

References

1. Havel, V. New Year’s address to the nation. 1990.http://old.hrad.cz/president/Havel/speeches/1990/0101_uk.html

2. Havel, V. A farewell to politics. The New York Review of Books. 49:16, October 24, 2002. http://www.nybooks.com/articles/15750

3. Edson, M.. W;t. New York: Faber and Faber, 1999

Coulehan, J.L. Tenderness and steadiness: emotions in medical practice. Literature and Medicine. 14:222-36, 1995

Lempp, H. and Seale, C. the hidden curriculum in undergraduate medical education: qualitative study of medical students’ perception of teaching. British Medical Journal. 329:770-3, 2004