by Kristin O`Connell
Literature & Medicine: Humanities at the Heart of Health CareTM is a hospital-based program consisting of six monthly discussions among a diverse group of people involved in health care. A professional facilitator leads the conversations, which focus on texts that illuminate issues related to illness, death and dying, and caregiving. (A partial list of readings used in the program can be found on page 7.) Developed by the Maine Humanities Council, the program was first offered in Massachusetts under Massachusetts Foundation for the Humanities (MFH) auspices from January to June 2003. In January 2004, the second series of seminars began at five sites: Berkshire Medical Center in Pittsfield, Lahey Clinic in Burlington, Faulkner Hospital and Children’s Hospital in Boston, and UMass Memorial Health Center in Worcester. Early this spring, MFH Assistant Director Kristin O’Connell invited several participants in last year’s seminars to reflect on their experience of the program in an email discussion.
Judith Frank teaches in the English Department at Amherst College and facilitates the L&M group at Berkshire Medical Center in Pittsfield. Andrew Plager, M.D. is a hospitalist at Berkshire Medical Center and consults at a local health spa. Mary Wright is an Advanced Practice Psychiatric Nurse at Faulkner Hospital. Erling A. Hanson, Jr. is President and Chief Operating Officer of Forest Hills Cemetery and a trustee of Faulkner Hospital. Margaret M. Duggan, M.D. is a surgeon at Faulkner and Medical Director of the Faulkner Breast Centre. Debra Papa, M.D. practices obstetrics and gynecology at UMass Memorial Health Center and teaches at UMass Medical School.
Kristin O’Connell: What led you to become involved in the Literature & Medicine program?
Judith Frank: I’m both a literature professor and a breast cancer survivor. My family has a lot of breast cancer in it, and hence we have a lot of experience as patients. We’ve had both good experiences and awful ones with health care practitioners, and have very strong feelings about many of our doctors, running the gamut from love to rage. When you invited me to participate in this program as a facilitator, I jumped at the chance. I thought it would be a great opportunity for me to talk with healthcare providers about the dynamics of trust and power that occur between them and their patients.
I’d been teaching a course at Amherst College called Representing Illness, and I also looked forward to having conversations about illness and health care with adults who have been around the block with these issues, rather than with 18-year-olds, for a change.
Mary Wright: I joined the seminar just as I moved from a per diem role at Faulkner to a “real job,” and I felt a wish to make a deeper connection with the hospital community. I was especially interested in the way the seminar was advertised, with an emphasis on diversity across disciplines and departments.
Erling A. Hanson, Jr.: Serving on the Ethics Committee as a hospital trustee — examining the moral and philosophical implications of problems in the delivery of health care — had been a wonderful experience for me, so I was thrilled to have the opportunity to participate in Literature & Medicine.
Margaret M. Duggan: I love to read but have a hard time finding time, and I felt this would be encouragement to do so. I wanted to meet people in different areas of the hospital and to have something in common with other members of the community that did not revolve around patient care or hospital politics.
Debra Papa: My mother had recently passed away from colon cancer, and that experience had enabled me to see medicine from the other side and to understand the importance of compassion as well as knowledge. As an obgyn involved with residents and medical students, I wanted to learn more about these issues and hopefully use them in teaching.
Andrew Plager: What drew my interest (aside from the novelty of the whole concept of a medical reading group) was the growing sense that my practice was becoming at least oblivious to, if not divergent from, my general beliefs about health and health care in general. The group seemed to promise a sounding board or lens through which to measure some of the thoughts and impressions that were accumulating from my practice.
KO: Literature & Medicine discussion groups include a variety of health care professionals, with the expectation that their different perspectives will enrich the discussion. But hospitals are notoriously hierarchical workplaces, and tensions over differences of status could have worked against the group’s developing mutual trust and openness. To what extent was this an issue for your group?
EAH: I never sensed any tension. We share a light box supper before we officially begin. The breaking of bread together always helps.
AP: I honestly didn’t perceive anything hierarchical about our particular group. Perhaps we were somewhat homogeneous, mostly doctors and nurses. There were a few other members — a minister, a few psychologists, a board member/businessperson — but they were all well spoken and well received by the group. The board member/businessperson seemed a bit self-conscious about not having the same authority to speak about certain issues (her perception), but in a way she had a more interesting perspective as a relative outsider to health care practice.
JF: Of course, as the facilitator, I’m probably not the best person to judge the status of the group’s mutual trust and comfort. But from my perspective, the group at Berkshire Medical has been remarkably comfortable with one another, and also pretty nonhierarchical. In fact, last year I found them a little too conflict-adverse: it was I who had to spark disagreement a lot of the time. The driving concern of almost all of them is how to invest in their work in a responsible and human way, and not burn out.
MMD: We had excellent ground rules. For the first few meetings we introduced ourselves, giving our position and one important personal fact. We used first names only, and all discussion was understood to be confidential. Our facilitator took great pains not to interrupt and to get opinions from the quieter group members.
Even so, I did find that there were tensions in the Faulkner group that felt related to status. Occasionally it came up when people from the same department but of different status seemed to be playing out a workplace issue in this different setting. There was one striking event, I thought. Another physician in the group was about two hours and 20 minutes late for our first meeting. When he came in he apologized for being late and then took over the discussion so that he could make his points. I found this very difficult. But he had missed the ground rules, and that might have made a difference. And these issues seemed to diminish as the weeks passed.
DP: At UMass Memorial I did not feel that there was any feeling of hierarchy. We had dinner together before the seminar and talked of other things, and we used first names. One member of our group gave birth during the spring, and the feeling of sharing in her experience also took away barriers. But I felt comfort and trust from the beginning.
KO: Which readings provoked the most memorable conversations in your group?
MW: My fondest memories are of The Spirit Catches You and You Fall Down and Rehab at the Florida Avenue Grill.
Spirit was such a phenomenon: the story itself, the reflection on the health care system, the complexity of the Hmong family and its culture, the interaction between the family and the system, the individual caregivers, and the author’s incredibly adept job of weaving the story together. The discussion ranged far and wide, with people teaming up and dissolving like a kaleidoscope around particular issues. Some of us were defensive about the professionals with whom we identified; some of us were super-critical about the insensitivity of the professionals and the system; some of us were stunned at getting such an intimate view of such a different culture. I remember it being a difficult discussion, and a very rich one.
Rehab made me very happy. It reminded me of patients I took care of as a nursing student 35 years ago, as the poet described people in the hospital and in their homes. Names of patients came back to me, and memories of home visits as a public health nurse, and things I did that were just a little off the beaten path because I was outside of the hospital where everything felt so constricted. I felt that a few of the nurses in the group were in that same place — remembering feeling so close to our patients, so intimately tied into their lives, as one becomes when visiting in someone’s home.
DP: Our group had a strong conversation around Abraham Verghese’s My Own Country, which deals with a doctor’s experience with the HIV epidemic in a small community. Another book that raised issues related to diversity was The Cancer Diaries, by the Black writer Audre Lorde. That book seemed to draw a lot of emotional response. We did not all agree with her, yet the discussion allowed us to understand her.
JF: From my perspective as a facilitator, the conversation about Lorrie Moore’s story “People Like That Are The Only People Here,” which we had in the very first session last year, was very moving. People talked about the medical problems their own children have faced, and were very open about their feelings of fear and helplessness — which they were unaccustomed to as health care providers — in the face of those problems.
I also remember a rather devastating conversation inspired by Sophocles’ Philoctetes. (Philoctetes was the Greek warrior who stumbled upon a forbidden shrine on the way to Troy, and was bitten by a snake on the heel. The wound was so bloody and noxious, and his screams so terrible, that the Greeks dumped him on an island rather than take him on to Troy. Now, nine years later, a prophecy has come down saying that only Philoctetes, and his divine bow, can conquer Troy. So they have to figure out how to force or manipulate him to Troy.) The group talked about patients who have had the grossest possible diseases, especially a morbidly obese fellow who had some kind of disease that caused a terrific stench and maggots to grow in the folds of his skin. The nurses in particular had a lot to say about how they managed this emotionally, and how they tried to remember that this guy was a human being. I was really impressed by both their humanity and their camaraderie.
Some of the conversations I like best happen when the group is made uncomfortable by something we’ve read. Doctors in particular don’t like ambiguity or discomfort very much; last year my group used to joke about that. So that’s where I come in as a cheerleader for ambiguity, teasing them into letting their minds do something they’re unused to. This happened when we discussed the strange last scene of Amy Bloom’s story “Rowing to Eden,” where a husband of a breast cancer patient kisses and caresses the scar of her best friend, who had breast cancer a few years ago, as a way of getting close to his wife. They just didn’t like that — until we talked about the manifold ways in which that scene makes us uncomfortable, and they came to see that discomfort as interesting and challenging.
AP: The readings were almost universally troubling, perhaps less frequently divisive. I can recall differences of opinion surrounding virtually everything we read.
Richard Selzer’s piece “Imelda” left me somewhat at odds with other readers. I felt far more sympathetic to the doctor. (In this story, a plastic surgeon performs cosmetic surgery on the corpse of a patient who has died unexpectedly, and the patient’s mother is consoled by the belief that her daughter has “died beautiful.” — ed.) Despite perceiving my own practice to be far different from his, I nonetheless thought there was something ironically altruistic in his forgoing the social/interpersonal exchanges that most of us find so rewarding, a paradox that has lingered with me since. Others simply found the doctor’s style too cold and impersonal to be sympathetic.
Mark Doty’s AIDS memoir, Heaven’s Coast, was probably the book that left the group most divided. Some readers were effusive in their praise; others found the author somewhere between long-winded and self-indulgent, as if put out by witnessing the breadth and depth of his catharsis.
I agree with Judy that the Lorrie Moore piece aroused a particularly wrenching conversation. Moore is threateningly incisive and cutting, not painting the medical profession in a particularly rosy light, but profoundly moving in the way she brings to life the horror of experiencing one’s child’s illness.
Another story that week, the Amy Bloom piece, was more of a revelation to me. The main character’s interaction with her husband really caught me off guard. The woman with breast cancer becomes surprisingly estranged from her husband, a genuinely funny, sympathetic sort of spouse who nonetheless seems of little comfort to her through her illness. His inability to reach her adds a disturbing layer of sadness to the illness, one I don’t think I would have ever tuned in to had I been a participant in her care.
KO: How would you describe the program’s overall impact?
MW: I’d say it enhanced the quality of my working relationships and got me out of the isolation of the unit I work on.
EAH: The opportunity to interact with so many folks with diverse talents, all of whom display such a desire to better their roles in delivering quality health care, has been a real blessing. I would hope that other hospital trustees could benefit from this experience.
MMD: I found the entire process wonderful. My department is sometimes a little bit separate from the hospital, so I found it a way to connect with people in other departments. I also liked the fact that it was open to anyone and not for doctors or nurses or any particular group. I found people to be very open. Privacy was maintained, and I personally felt able to say what I felt without being judged in any way. I feel more connected in the Faulkner community than I did before.
AP: My experience with the reading group has been very positive. Within the professional culture of medicine, there is an inbred frame of reference which is frequently at odds with the perspectives of those in other corners of the health care world, especially those on the receiving end. There’s often an imbalance in the relationship between caregiver and receiver, perhaps due to the relative power and control of information inherent in the encounter. When questions are raised and brought to life in the words of a Lorrie Moore or Mark Doty, it’s a great eye opener for those of us on the doctoring end. The exchange of ideas and perspectives was frequently most revealing to me when I got to hear from not doctors or nurses — with whom I speak all the time — but from those from more disparate vantage points, like board members, clergy, and social workers.
While the group formed the basis for new friendships, its impact on the overall work life of the hospital has been modest so far. In a perfect world the mandatory readings of sterile OSHA manuals would be replaced by mandatory readings of a different persuasion: Literature & Medicine assignments as mandatory humanization strategies for the hospital staff. Not likely. I wish the impact of certain readings, and perhaps the process itself, touched a larger percentage of the hospital at large.
KO: MFH hopes to continue offering Literature & Medicine in your hospitals and to expand it to others in the years ahead. Thank you all for sharing your reflections with MassHumanities.
©2004 The Massachusetts Foundation for the Humanities
Published in Mass Humanities, Spring 2004