Portland, Maine, United States (Fall 2009)
Imagine doctors, nurses, receptionists, trustees, administrators, lab techs and physician assistants, books in hand, sitting in a hospital conference room, cafeteria or lounge. With a humanities scholar serving as a facilitator, they are discussing the novel, short story or poem they have read, and reflecting together on what it means to them – as people and as professionals engaged in the enterprise of health care.
Literature & Medicine: Humanities at the Heart of Health Care ® engages diverse groups of health care professionals (defined as all hospital staff) with literary texts that invite them to step into worlds outside of their own experience, with vibrant and often profound accounts of illness, death and human relationships in different places and times. The program takes the transformative power of the humanities into the heart of health care, connecting the world of medicine with the world of lived experience—and directly affecting the way in which work is performed. This deceptively simple practice—reflecting on professional roles through the lens of literature and sharing insights with colleagues—has a significant effect on the way participants understand their profession and their work relationships. As evidence, program participants between 2005 and 2008 reported a great or medium increase in:
Empathy for Patients – 79%
Interpersonal Skills – 64%
Communication Skills – 58%
Job Satisfaction – 62%
Cultural Awareness – 67% 1
Created by the Maine Humanities Council in 1997, Literature & Medicine has spread to 25 states and 138 health care facilities across the country, from Maine to Hawaii, and Florida to Montana, plus 4 in Argentina, thanks to major support from the National Endowment for the Humanities and to partnerships with state humanities councils.
In 2010, as part of a new initiative, Literature & Medicine will be offered to the staff at Veterans Administration Medical Centers (VAMCs) in 14 states. In November of that year there will be a national conference to publicize this initiative. Jonathan Shay, M.D., Ph.D., a 2007 MacArthur Fellow and author of Achilles in Vietnam: Combat Trauma and theUndoing of Character and Odysseus in America: Combat Trauma and the Trials of Homecoming, will be the keynote speaker. His books trace the parallels between the warriors Achilles and Odysseus and the situation of modern-day soldiers; and thus his texts have been central to the Literature & Medicine program, in both VA and non-VA hospitals, where they have deepened participants’ understanding of the effects of warfare and post traumatic stress disorder on the individual. As Dr. Shay has said, when Iraq veterans speak, he “hears echoes of the same loss and anger that have wounded generations of soldiers, all the way back to ancient Greece.”
The National Endowment for the Humanities’ support has allowed the Maine Humanities Council to build a national Literature & Medicine infrastructure and program identity. Maine offers training and conferences, an e-newsletter, Synapse and two anthologies, Imagine What It’s Like, and, most recently, Echoes of War, the latter specifically for programs in VA facilities.
At the heart of Literature & Medicine are the groups of 15 to 25 participants that meet monthly over six months to discuss the readings. These are not drop-in groups: participants are asked to commit to attending all of the meetings, and to complete the assigned readings so that they can contribute to the discussions. The facilitators are typically literature scholars, but have also been historians, philosophers, sociologists and medical doctors. Of key importance is that the facilitator is an outsider—not a member of the staff at the host hospital. Meetings are typically held in the evening and begin with supper, continuing with two hours of discussion about texts that illuminate issues central to the participants: caring for people, whether they are well, sick, or dying. This format creates a congenial space that invites participants to step out of their professional roles and, over the course of the program, to come together as a cohesive group. Discussions are explicitly confidential; so group members can feel safe sharing their thoughts about the topics raised by the readings, which are always, directly or obliquely, connected to issues confronted by health care professionals.
The Literature & Medicine experience expands professionals’ ability to interpret their patients’ illnesses and to care for them. Evaluating patients requires the skills exercised by careful readers: respect for language, adopting alien points of view, and the integration of isolated phenomena—physical findings or metaphors—so that they suggest meaning. The acquisition of a detailed health history or diagnosis, such as the careful study of literature, also requires the organization of events into a narrative, understanding one story in the context of others by the same narrator, and the alertness to the possibility of an unreliable narrator. In the patient-provider context, careful listening can be crucial. Patients, as well as books, require interpretation, and it is the humanities, the traditionally interpretive disciplines, that offer health care professionals another way of understanding their patients and their stories. Comments from two participating physicians illustrate this point:
[C]linicians can improve our listening skills by reading. As we become more appreciative of the intimacy which patients grant us by sharing their stories, we become more compassionate listeners. By listening more attentively, we are able to provide care which is more patient-centered and more humane. We also improve our clinical skills. If we listen well, we get more accurate information and can provide better health care.
[T]he book discussions have changed my practice. I know that. I’ve slowed down. That makes me less efficient for the HMO, I guess, but a better listener and not as rigid in my approach.
Donald Hall’s poems in Without chronicle his wife’s fatal illness, reminding participants of the vital role played by family members and of the need to be sensitive to the pain and helplessness they feel in the face of an ill or dying loved one. Tillie Olsen’s Tell Me a Riddle makes real the anguish and frustration that can be part of the aging process. Franz Kafka’s Metamorphosis helps participants consider the ways in which injury and illness can transform, disfigure, and isolate a person. Tolstoy’s The Death of Ivan Ilyich once helped a physician to more fully engage with a dying patient. Sensing that, like Ilyich, her patient was resisting his imminent death because of unfinished business in his life, the physician initiated a conversation that helped both her patient and his daughter resolve issues between them that then allowed him to die peacefully.
Depression, as portrayed in Jane Kenyon’s collection of poems, Otherwise, and in William Styron’s Darkness Visible, helped participants move beyond an intellectual to a deeply compassionate understanding of the illness. One group’s discussion focused on the incredible pain suffered by some of their patients and the strength they have to withstand it. This group, at a mental health care facility, found descriptions of the terror of falling into depression again particularly compelling. One participant said she realized she needed to listen to her patients more closely and stop making assumptions about them. The group also discussed the sense of frustration many of them experienced when, after working to stabilize patients in crisis, the patients would be sent to another unit or facility where their initial caregivers could not follow up on their progress.
The transformation can be profound; this physician shared that after reading patients’ and families’ accounts of death, he now understands that he has a role in the dying process:
I think that some of those discussions in the books, as well as my dealings with people [in the program], made me feel that those patients need you as much, if not more, going through the dying process—being there, holding their hand and making them just sort of feel that you care, even though you’re helpless.
In a particularly dramatic example of the program’s impact on cultural awareness, another physician explained how a reading, The Scalpel and the Silver Bear, by Lori Alvord, had helped her care for a Native American man who was dying:
This man had talked about hallucinations. My normal physician self, who didn’t know, would have said, ‘OK, I’ll give you something for that.’ But because of the readings I knew enough to ask if they were good or bad hallucinations. It turns out he had seen a bear coming to his bed at night, and that he was happy for the visions because the bear signified strength.
A nurse related an analogous result after reading The Spirit Catches You and You Fall Down, by Anne Fadiman:
The program really impacted my communication: the one reading about the little girl with epilepsy and how her family didn’t understand. We have a lot of Spanish people and a lot of Vietnamese people around us every day and it makes me wonder now, did they understand? I have changed how I approach them and their understanding of their care.
In another group’s conversation about the same book, a participant who answers phone calls from people in crisis said that he now thinks more about who is calling and whether they really understand what he is saying to them, particularly when there is a language barrier. He said he would take more time and try to be more patient to make sure that communication was clear.
Another nurse shared:
I was really burned out when I started this thing and I did not realize I had some of the biases that I had. And I think the readings helped me get some of them behind me a little bit. And I think I am a better nurse now and I am doing more that is good. I have my patience back and tolerance and a little better understanding of some people that I probably would have judged differently before.
Literature & Medicine reaches a uniquely heterogeneous audience, many of whom come to the program because they feel they have lost touch with the reasons that motivated them to enter the health care profession in the first place. The insights, the critical thinking, and the self-reflection that humanities texts and scholar-led discussions encourage are often what they need to reaffirm that commitment. As one physician wrote:
We have just felt beat up for the past few years. We desperately need something that will allow us to explore our feelings and thoughts together, and remind us of the reasons we’re still in medicine.
Comments from other participants are equally compelling:
I have been working in the ER and felt like I had lost my own humanity.
I wanted to relearn how to think and talk.
[T]he discussions that occur in these groups are rejuvenating for providers; ultimately, if we are less depleted by our stressful work environments, we have more to give to our patients.
I was really burned out and I was feeling like I was at the point of leaving oncology. And there was one story in particular (My Own Country by Abraham Verghese) about an AIDS patient and the doctor feeling like he had nothing to offer and sometimes we feel like we don’t have anything to offer. That is how I felt. Now I feel connected and feel like I’m not so alone and I really needed that. I feel like this group has probably kept me in oncology, and I have been able to share when I see others go through these burn out symptoms.
I think discussing these issues is such an important way to prevent burnout, enhance relationships, and enhance care because of self-awareness.
The program can also affect the institution and its culture. A nurse reported that physicians in the group had developed new respect for her, transforming their working relationships. Another nurse noted that the seminars helped foster communication across the hierarchy of medical culture, which was much needed. A receptionist talked about how she realized that as the first person patients encounter upon entering the hospital, she could help set the tone of their experience. This realization helped her understand her important role as part of the health care team. This insight was validated by a Chief Medical Officer who called the program the best team building activity his hospital had ever had. An administrator in this hospital wrote:
Surgeons commune with nurses from our long-term care facility; secretaries speak with equal voice to administrators; laboratory technicians give their viewpoint to obstetricians. In short, [Literature & Medicine] has greatly improved communication among participating employees, and has also improved communication with patients.
Many medical and nursing schools are turning to literature to help their students develop the human competencies that they will need to better comprehend illness and treatment from patients’ points of view. Literature & Medicine uses literature to offer a diverse group of practicing health care professionals, who typically have not had the benefit of these recent approaches, the opportunity to develop their skills of narrative construction and interpretation, to expand their understanding of the human experience of illness and death, and their ability to communicate with their patients and colleagues. Thus, although Literature & Medicine is part of a larger movement, it is also unique. As the only national program for health care professionals, it is the only one that involves a heterogeneous mix of health care professionals, and the only one in an organizational and practice setting where there is potential to significantly influence the relationships among the participants, as well as with their patients.
- Dr. Bruce Clary, from the Muskie School of Public Service at the University of Southern Maine, developed and implemented an evaluation based on the Kellogg Foundation’s logic model. A combination of interviews, observations, document review, surveys, focus group results and case studies yields a complex picture of the outcomes and impacts of Literature & Medicine. His most recent report (November, 2008 at
http://mainehumanities.org/programs/litandmed/documents/Lit-Med-Eval-Final-Report.pdf) analyzes the results of an evaluation of 1,012 participants, from Fall 2005 to Spring 2008. As the Executive Summary states, “[T]he program has had a consistent and positive impact on participants . . . . Evaluation outcomes significantly reflect the basic program goals for participating individuals: increased empathy for patients, greater cultural awareness, improved interpersonal relations, better communication and more job satisfaction. . . . In reflecting on these outcomes, it is noteworthy the impact that the Program has had on empathy toward patients and other caregivers. This dimension encompasses elements of personal and professional growth that is not easily taught through training and development workshops. . . . Further, measurable gains were made in the area of cultural awareness. Issues related to diversity in the workplace have proven to be difficult organizational challenges, not just in the medical, but all fields. The approach used by the Program should be seriously examined by health organizations as a way to increase understanding and communication in diverse employment settings.” (Emphasis added.)
VICTORIA BONEBAKKER has been the Associate Director of the Maine Humanities Council since 1997 and was the founder of the Literature & Medicine program in Maine. She has served as project director since then, working in close collaboration with her colleague, Elizabeth Sinclair, and, as the program has spread, with staff at other humanities councils across the country.
For more information about Literature & Medicine, please refer to the web site:
Highlighted in Frontispiece Fall 2009- Volume 1, Issue 5