Created by the Maine Humanities Council in 1997, Literature & Medicine: Humanities at the Heart of Health Care™ is a hospital-based humanities reading and discussion program for practicing health care professionals. The program encourages participants to connect the world of science with the world of lived experience and engages them with humanistic perspectives and insights that help them do their work better. Literature & Medicine is unique in promoting statewide programs that involve a heterogeneous mix of veteran health care professionals.
Although medicine continues to make great technical progress, there seems to be agreement that the quality of the interpersonal connections and communications at the heart of patient-caregiver interactions has generally declined. The language of science, its worldview and its mode of thought, conspires to devalue the person, so that too often it is a disease, not a patient, at the center of a medical event. This emphasis on the disease rather than the person has the added effect of excluding the patient’s social and cultural context: the family, friends, and even coworkers affected by the patient’s experience and whose reactions may shape the outcome and influence the dynamics of care the patient receives.
Reading and discussing literature is an opportunity to expand comprehension of the human experience of illness and death and improve communication skills. In a time when their patients are often strangers or of a different religion, economic status, or cultural background, health care professionals cannot always rely on what they know from their own lives to understand their patients. Literature, however, allows them to vicariously experience worlds outside their own understanding, supplying vivid accounts of illness, death, and human relationships in different places and among different peoples from many different viewpoints.
Medical schools, of course, are turning to literature more and more to help future physicians develop the human competencies of doctoring they will need to better comprehend illness and treatment from patients’ points of view. With a similar goal, Literature & Medicine offers practicing health care professionals--most of whom have not had the benefit of more recent approaches to medical education--the same advantage. In addition, the program brings together professionals from across the spectrum of health care, creating a forum where typical hospital hierarchies and roles are left aside.
After three years of piloting and three years of statewide implementation in Maine, it is clear that Literature & Medicine has made a difference. The opportunity to reflect on professional roles and relationships through the lens of literature and to share reflections with colleagues in health care has significantly influenced the way the program’s participants understand their work and their relationships with patients and each other. In fact, the Maine Hospital Association recently cited Literature & Medicine as one of the significant quality initiatives implemented by Maine hospitals.
History of the Program
Literature & Medicine was developed by the Maine Humanities Council led by Geoffrey M. Gratwick, MD, and a diverse group of health care professionals, policy makers, and humanities scholars. It was designed expressly for a heterogeneous group of veteran health care professionals--physicians, nurses, midwives, hospice-care providers, policy makers, hospital trustees, and allied staff. With funding from a University of Chicago grant, in 1997 the Maine Humanities Council organized three series of reading and discussion groups; the only one for health care professionals took place at Eastern Maine Medical Center in Bangor, where Dr. Gratwick is chief of rheumatology. The success of that experience convinced the Maine Humanities Council to expand the program, and with funding from the National Endowment for the Humanities, the council began a statewide planning process that brought a wide range of practitioners and policy makers together, including representatives from the Maine Hospital Association, the Maine Medical Association, medical educators, nurses, physicians, public health practitioners, and humanities scholars. This core group of advocates helped build a wide base of support and generate interest in the program, and a second, major grant from the National Endowment for the Humanities allowed the council to actually implement it. With help from the Maine Hospital Association, which mailed a letter to all hospital CEOs inviting their hospitals to participate in Literature & Medicine, the first year of statewide programming in 2000 began with ten hospitals; by the second year, word had spread and the number rose to 21. To date, Literature & Medicine has been in 25 or roughly 65% of Maine hospitals. These include the largest and the smallest hospitals in the state, in rural as well as city-based settings. There has been more interest than anticipated and relatively little attrition, even though hospitals have been required to assume a larger share of the costs of the program each year. The executive director of the Maine Medical Association wrote, “The growth in the number of hospitals participating has been phenomenal. Physicians continue to express to us their feeling that this type of activity is a welcome oasis in the middle of a chaotic and less than satisfying professional life.”
A third grant from the National Endowment for the Humanities funded training for representatives from seven other states that now offer Literature & Medicine programs through their respective humanities councils. Literature & Medicine is or will soon be underway in Connecticut, Illinois, Massachusetts, New Hampshire, North Carolina, Rhode Island, Vermont, and Utah through their respective humanities councils. The Maine Humanities Council organized a summer institute to train scholars from each state (primarily university-level humanities scholars) about the content and pedagogy of the Literature & Medicine program, and hosted a conference to prepare hospital liaisons and humanities councils’ staff members for the process of organizing and implementing the seminars. It also compiled an anthology of short readings for use in Literature & Medicine; the collection is currently under consideration by national publishers. Maine has become, in effect, a laboratory for Literature & Medicine.
Description of the Program
Literature & Medicine programs meet monthly for six months at the host hospital. They are typically scheduled to begin with a light supper and continue with two hours of scholar-led discussion about assigned readings--works of fiction, poetry, drama, and nonfiction that illuminate issues central to caring for people, whether they are well, sick or dying (see List 1).
A liaison at each hospital publicizes the program, recruits participants, and arranges for meeting space within the hospital and food for the prediscussion supper. The mix of each group is different in terms of men and women; nurses and doctors; administrators, allied staff, and trustees. At least one hospital has invited community members to join the group. With self-selected groups ranging in size from ten to a maximum of 25, more than 900 health care professionals in Maine have participated over the life of the project.
Council staff choose a humanities scholar for each hospital and work closely with the scholar and hospital liaison to craft an appropriate syllabus of readings, providing additional support and assistance during the program as needed. A major part of the scholar’s work is to facilitate a safe environment for discussion. All voices are equal, expertise is not required, ambiguity is accepted, tentative interpretations are encouraged, and participants feel free to challenge one another other and to examine and discuss the possibility of mistakes.
The Effects of the Program
All participants evaluate their experience in writing at the end of each six-month series, and the evaluation process is coordinated by the president of the Acadia Institute. The respondents have reported that the seminar experience
* Helped them understand the role of social and cultural factors in how patients and their families respond to illness and how they interact with caregivers,
* Sensitized them to the problematic nature of communication, and to the need to think about and interpret what is being said by their colleagues as well as their patients,
* Increased their ability to recognize and deal with the different values and perspectives they, their colleagues, their patients, and the patients’ families bring to a situation, and
* Caused them to examine their roles, what they do in their work, and how that affects them personally.
Judith Swazey, PhD, president of the Acadia Institute, writes, “The evaluations continue to demonstrate that the developers and implementers of the Literature & Medicine program were completely on target in recognizing the extent to which health care professionals in Maine would be attracted to and benefit from the seminars. The high ratings, particularly for the effects of the seminars on the participants, are all the more noteworthy given the fact that the session[s] occupy a very small amount of people’s time over a five or six month period.”1
And, in fact, participants have indicated they have changed the way they think about and do their work. One physician wrote that he has slowed down and become a better listener. A receptionist reported that she is now more conscious that she is the first person people speak to when they come to the hospital. A physician who had never acknowledged the problem of medical errors began citing a Literature & Medicine text to his colleagues as the reason his thinking on the issue had changed. In another dramatic example, a physician explained how one reading (The Scalpel and the Silver Bear by Lori Alvord) had helped her care for a Native American man who was dying because she knew enough to ask him if his hallucinations were good or bad before automatically giving him something to make them go away. A physician’s assistant wrote that he has become more aware of the need to explore a patient’s life more deeply, rather than just dealing with the complaints he comes in with.
Some texts are particularly challenging. A physician reflected that, although at first he felt that the readings were not fair to physicians, he came to realize they were telling a different story, one that was accurate but from a perspective he was not used to hearing. Other comments reveal similarly profound shifts in perspective, as when a physician shared that, because of the program, he now understands he has a role in the dying process even though he is “helpless.”
Reading and discussing Tolstoy’s The Death of Ivan Illych helped a physician to more fully engage with a patient with end-stage cancer. Sensing the patient had unresolved feelings that were making it more difficult to let go of life, the physician initiated a conversation that helped both her patient and the patient’s daughter. Another physician appreciated the chance to think about the connections between care providers and the human suffering they encounter, and a trustee reported that his experience led him to believe that personal and human issues should occupy more of the trustees’ time and attention.
These insights testify to the power of reading and discussing literature to broaden and deepen health care professionals’ ability to care for patients as individuals, not merely as carriers of the disease they may have. When patients are listened to carefully and with respect, clinicians, in turn, obtain more accurate information and can prescribe regimes with which patients are more apt to comply. One Literature & Medicine participant explained, “As we become more appreciative of the intimacy that patients grant us by sharing their stories, we become more compassionate listeners. By listening more attentively, we are able to provide care that 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.”
The Literature & Medicine experience also provides groups of diverse health care professionals the chance to come to know each other away from the often frantic pace of work in a context related to, but much broader than, their professional roles. A hospital medical director described the seminar as an important team-building experience, and he reported that the experience “allowed us to overcome traditional hierarchical stereotypes and to appreciate the important contribution that each member brings to [the] work of medicine.” A head of nursing and patient care services called it a great community-building experience that “will translate to the bedside.” A nurse commented that the relationship of mutual respect she developed with physicians in the program improved their ability to work together in the hospital. One of the facilitators, a physician who participated in Dartmouth Medical School’s literature and medicine seminar as a student, observed that a group of diverse providers yields a far richer and, ultimately, more powerful discussion than one that is exclusively physicians or nurses or trustees.
In the typical hospital hierarchy the physicians are the experts, and they are not always accustomed to being questioned. Further, the culture in which they and other health care professionals work does not welcome ambiguity or tentativeness, and often it does not acknowledge mistakes. Just the experience of interpreting a text one way after a private reading and then understanding it differently after a discussion causes shifts in understanding and challenges a single, authoritative view. As one physician noted, “I’m amazed by how differently we read these books. It makes me wonder how differently we hear our patients’ stories. And how our patients perceive us.” Program participants have repeatedly said the experience has challenged and broadened their perspectives.
Reading and discussing literature is a means of considering and reflecting upon one’s own story and the influences of one’s own situation or environment. Literature & Medicine gives participants an opportunity to examine what they do in medicine and what medicine has done to them, stimulating important introspection about and examination of who they are in relation to what their profession calls upon them to do. The program helps to expand the area within which caregivers feel comfortable by increasing their sense of connection to those they serve and work with. Increased self-knowledge can help health care professionals to recapture their own satisfaction with their work, as the evaluations indicate the Literature & Medicine experience has helped them to do. A social worker wrote that the seminar helped her clarify why she is a social worker; a nurse reported that she had come to appreciate the richness of her training; and a physician explained that, because of what he had learned in the program about himself and his relationships with his patients, he had reduced the size of his practice but had never felt more committed to it or enjoyed it more. He passionately argued for the need to expand the Literature & Medicine experience, particularly among younger providers. A nurse wrote, “I knew my role was valuable, but I think I more fully understand how far-reaching that can be. I have learned how important it is to listen to each individual, to hear what their need is and also to hear the needs of the extended family.” Facilitators, too, have seen the seminars’ salutary effect on morale that comes from participants’ hearing about colleagues’ passionate commitments to healing, which is all too often obscured in the daily hospital routine.
Books and Bodies Require Interpretation
Health care is an interpretive activity that relies on scientific knowledge about the generalized body and subjective understanding about the patient and his or her story. Evaluating patients requires the same skills exercised by careful readers: respecting language, adopting alien points of view, integrating isolated phenomena so that they suggest meaning, organizing events into a narrative that leads toward their conclusion, understanding one story in the context of others by the same teller, and being alert to the possibility of an unreliable narrator.
The Literature & Medicine program helps health care professionals add the ability to listen and understand their patients to their care-giving repertoires. Group discussions of literature demonstrate that different readers can find different meanings and even different stories in the same text, and that therefore both narrative and its meanings are as dependent on the reader as the writer. This understanding is particularly important in our democratic and pluralistic society where there is no homogeneous value system, no consensus on the purpose of human life, and no common agreement on what constitutes a good life.
The overwhelmingly positive response to the program in Maine, and now in other states, suggests that Literature & Medicine has a broad reach, one that can continue to make a very real difference in the lives of the people it touches, directly or indirectly. The Maine Humanities Council is currently exploring ways to extend and expand the program, including the establishment of a national institute to provide training and technical support to Literature & Medicine programs around the country and to raise the major funding that will be required.
This ambitious undertaking promises significant rewards. For every health care professional who becomes more sensitive to the issues of narrative and perspective when communicating with patients and with colleagues, hundreds if not thousands of patients will be affected. In addition, the program’s participants themselves, in the process of connecting more fully with their patients, will find their work more fulfilling. As a physician wrote about Literature & Medicine, “Both patients and providers are crying out for health care to become more humane. As the delivery of health care has become increasingly driven by volume requirements that limit how much time we spend with patients and by the technology that aids in diagnosis, but may lessen our involvement with patients, this project can help to restore the heart and soul of health care that so many of us believe has been weakened.”