By Lisa Rogers
In The Spirit Catches You and You Fall Down, the Lees, a Hmong family transplanted from the highlands of Laos to California, interact with a medical community they do not understand. Misfortune results, in part because the immigrants and their doctors lack a common language and shared cultural reference points.
Author Anne Fadiman writes, “Dan had no way of knowing that Foua and Nao Kao had already diagnosed their daughter’s problem as the illness where the spirit catches you and you fall down. Foua and Nao Kao had no way of knowing that Dan had diagnosed it as epilepsy, the most common of all neurological disorders. Each had accurately noted the same symptoms, but Dan would have been surprised to hear that they were caused by soul loss, and Lia’s parents would have been surprised to hear that they were caused by an electrochemical storm inside their daughter’s head.”
“It is probably my all-time favorite book,” says Janet O’Day, a nurse practitioner in York, Maine, who takes part in a regular discussion group with her colleagues about medicine and literature. “It shows how we don’t pay attention. And it also shows how you get into the system and you have to fit.” The story of misunderstandings, misdiagnoses, and Lia’s eventual collapse highlights the best and the worst of Western medicine. Fadiman writes, “If the Lees were still in Laos, Lia would probably have died before she was out of her infancy. . . . American medicine had both preserved her life and compromised it.”
Once a month from January through June, many of Maine’s doctors, nurses, and other medical professionals convene in small groups to explore how the lessons of literature can help them in their work. They discuss prose and poetry by authors on both sides of the stethoscope, investigating the intersection where science meets life. Program participants look at difficult issues through the lens of literature, allowing them to step outside their professional personae as they discuss topics such as effective communication with patients, diagnostic errors, and death.
The monthly sessions are organized by the Maine Humanities Council for its program “Literature and Medicine: Humanities at the Heart of Health Care.” It offers health care professionals a forum in which to explore their roles and their relationships with patients and other caregivers. “Literature and Medicine” is in its third year and is already reaching twenty-three of the state’s thirty-eight hospitals.
“The idea for the program first came up in the mid-1990s,” explains Elizabeth Sinclair, the project coordinator for the Maine Humanities Council. “We received a grant that was looking for a different approach to fostering leadership in the community. Though it wasn’t specifically aimed at medical professionals, one of our board members who is a physician thought we could really use a seminar like this. It was so successful that we’ve continued it at Eastern Maine Medical Center, the hospital he is associated with, for seven years. Then we wondered if it would work in a rural hospital. We tried it at Mayo Regional Hospital, which is smack in the middle of the state, and it was equally successful.” In the first year of the program eleven hospitals took part, and in the second year, twenty-one.
The group at each hospital is limited to twenty-five participants, who must be directly involved in health care. “I’ve been amazed by how eager the people who participate are to do this,” says Sinclair. “The kinds of things that worry me as a consumer of healthcare services worry them even more.”
“The seminars are open to everyone who works at the hospital, not just doctors and nurses,” Sinclair explains. “The participants may be people who like to read, people who really want to grow in their profession, and even some who want to get out of a burnout mode.”
After almost a thousand participants, staff members at the Maine Humanities Council who help organize the sessions can anticipate trends and pitfalls. One pitfall is to assume that the same topic will always elicit the same response from each group. “There is a different dynamic every time,” says Victoria Bonebakker, the council’s associate director. “Every place is different, so sometimes it doesn’t work as planned. Success is very dependent on treating every hospital, facilitator, and liaison individually. We can’t just roll out a blanket syllabus.”
With dozens of sessions, the Literature and Medicine program has a lengthy bibliography. “We have hundreds of books on the list,” says Bonebakker. “The problem isn’t that we don’t have enough, it’s having too many.”
The syllabus for each hospital is drawn up by a scholar who works with the Humanities Council staff and the hospital liaison. “Books are chosen that the scholar is comfortable with. We know which books usually work well and when.”
Each of the six sessions focuses on a different aspect of the personal-medical interface. The theme of death and dying appears on nearly every syllabus, often with Leo Tolstoy’s The Death of Ivan Ilyich. “Most of us read this book when we were younger,” explains Tom Lizotte, the director of marketing and development for the Mayo Regional Hospital in rural Maine. “It’s wonderful to come back to it now from a totally different perspective. We have tremendous give and take in these sessions. It’s very much like a tennis match with opinions going back and forth across the table.” Another book that reappears in many sessions is Between the Heartbeats: Poetry and Prose by Nurses. “We’re not just hearing from doctors,” says Sinclair.
Excerpts from books and articles about the Tuskegee Syphilis Study tell the story of the United States government’s forty-year study of a group of black men in Alabama as they suffered and died from syphilis. Treatment was neither offered nor given by the government doctors, raising ethical questions about race, power, and the role of doctors in the treatment of illness. “This is difficult and painful to read,” Sinclair says, “but it produces very good conversations--really hard conversations--about the medical field and why African Americans may still have trouble getting access to health care in America.” “Another difficult topic is medical errors. Medical professionals haven’t really had safe places to talk about this, especially in mixed groups. Sometimes it’s difficult to admit that things go wrong. We all want doctors and medical professionals to be perfect.”
“Books we consider successful are the ones that elicit discussions about the deep issues,” Sinclair continues. “Whether people have liked the books or not is a different matter. That’s been hard for people to get used to.” The popularity of the seminars attests to their timeliness and their success. With few dropouts and waiting lists at every hospital, the program fills a need in the Maine health care industry. “I’ve been amazed that doctors, nurses, and other professionals tell me that they find more satisfaction in their work,” Bonebakker says. “It’s in the evaluations. Doctors say they listen more and take more time with their patients. I believe that this is happening because they have the opportunity to slow down and reflect about what they do and connect in a deeper way with their patients. They can connect with the individual and not the disease.”
It is not just patients who benefit. “There is always the issue of hierarchy within the hospital culture,” says Bonebakker. “One of the purposes of the program is to sensitize people to the fact that it exists, and the seminars are intended to create a time and place to make it possible to overcome it. Everyone is on a firstname basis and all voices are equal.”
“Communications is a recurring theme,” says Lizotte. “A number of healthcare providers have told me they have changed the way they approach their work. It has helped them communicate better not only with patients, but with other physicians and around the hospital.”
It is difficult to measure how the program has changed the way medical professionals go about their work, Bonebakker says, but there is ample anecdotal evidence. “We had a nurse who told us that a doctor she’d had trouble working with for years began to show respect for her in the hospital and to listen to her after getting to know her and after hearing what she had to say in the seminars. A receptionist says that now she looks at people who come into the hospital in a different way. She is much more empathetic. She understands that she has a major role in how people feel about their visits to the hospital. And a trustee said that he now tries to talk more about personnel issues rather than just finance at the trustees’ meetings.”
The Maine Literature and Medicine program will run for another year before the hospitals must take it over themselves. “The program takes a lot of time and money,” Bonebakker says, “and some hospitals do not want to spend their resources on it.” But most are busy raising funds to continue the program and plan future seminars.
Next year, more states will build on Maine’s success. In June, the council hosted a summer institute for staff members and selected scholars to help jump-start the program in Massachusetts, New Hampshire, Rhode Island, Vermont, North Carolina, Utah, and Illinois.
Illinois will pilot the program at a hospital starting in January 2003. “We will use the Maine model for when we meet, how long the sessions are, who chooses the texts, and in having a hospital liaison,” says Phoebe Stein Davis, communications coordinator at the Illinois Humanities Council. “Our hope is to serve the state with this program. But Illinois has two hundred and forty-five community hospitals and several major research and teaching hospitals. We face a very different challenge from Maine’s.”
Nonetheless, the Illinois Humanities Council is excited about the prospects. “We see this program as breaking down barriers to people who may not have access to the humanities,” Davis says. “We want to show how the humanities can be of practical use to health care professionals in their sometimes soul-crushing, always inspiring, and vital work they do.”