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Book club good medicine for patients, physicians

Richard Jorgensen found the book’s narrator, a doctor, irritating.

And he was appalled by author Abraham Verghese’s vow toward the end of “My Own Country,” his memoir of treating AIDS patients, that in the future he would ease patients’ dying agony by administering morphine.

“That horrified me,” Jorgensen said. “You’re going to be the angel of death and give them morphine?”

But Becky Kruse, a nurse, didn’t see it that way. That passage, she said, showed that Verghese had become a more understanding doctor. “I felt … that he had grown in empathy,” she said.

“Is that empathy?” Jorgensen challenged. “Giving morphine?”

“To try to ease suffering when they’re bleeding out?” she came back. “Yeah, give me morphine.”

For 90 minutes inside a meeting room at Central DuPage Hospital in Winfield, these medical professionals talked about their responses to the book and grappled with vexing questions about health care.

The pleasures of reading and discussing literature are many, but this was a meeting of Literature & Medicine, a nationwide program of book discussions for medical professionals that may benefit patients as well.

The program, created by the Maine Humanities Council and now operating in 17 states, is simple. Groups of people who work at a health care site, usually a hospital, read books related to health care and discuss them under the guidance of a facilitator.

But the impact is complex. An evaluation of the program in 2006 found that 88 percent of participants said they had had more empathy toward patients. The program also increased communication among hospital staffers; gave participants a better understanding of cultural differences; and countered burnout by giving people a renewed sense of purpose, the evaluation found.

The testimonials from the nationwide evaluation, conducted by Bruce Clary, professor and senior research associate in public policy and management at the Muskie School of Public Service at the University of Southern Maine, were glowing.

“I don’t get angry at patients anymore,” one participant wrote.

“This course was a motivating factor for staying in nursing and not looking for a new job,” wrote a third.

Some described powerful influences from specific books.

“After reading Kafka’s ‘The Metamorphosis,’ I worked with [a] patient who had cancer and was also depressed. I mentioned I had read it and the patient read it too. Through the book I found a new way to understand his treatment and diagnoses,” one reported.

Patients benefit along with the health care professionals, said Clary, who teaches evaluation methods at the Muskie School.

“I don’t think I have any comments that ‘the patient recovered because I am a different person because of the seminars,’ but there all sorts of examples where people acted differently with a patient,” he said. “The process of health care is quite different if you have a regular physician who is empathetic.”

The Maine Humanities Council had no such expectations when it created the program 10 years ago. The University of Chicago had given the council a grant to bring book discussions to civic leaders, recalled Victoria Bonebakker, associate director of the Maine Humanities Council, and the decided to start at a local hospital.

Doctor gains perspective

At the end of the pilot program’s first session, Bonebakker asked a doctor what he had gained.

“He said, ‘I have learned that I have a role in the dying process,'” she said. It was hard to sit with a patient he could no longer help, he told her, but his readings in Literature & Medicine had convinced him that he should do so.

Bonebakker was floored. “I thought, ‘Oh, this is huge,'” she said.

With support from the National Endowment for the Humanities, it has become larger. In Illinois, the Illinois Humanities Council runs discussion groups at Central DuPage Hospital, Midwest Palliative & Hospice CareCenter in Glenview and Kishwaukee Community Hospital in De Kalb. A grant from the Prince Charitable Trusts, under its Hospital Morale Program, will enable the council to expand the program to Stroger Hospital and Mt. Sinai Hospital by the end of the year.

“Ultimately, the hope is to improve patient care,” said.Benna Wilde, the foundation’s managing director in Chicago.

“Hospitals are very intense places,” said Kristina Valaitis, executive director of the Illinois Humanities Council. “Caregiving is emotionally exhausting as well as physically exhausting. … When they read a book and come and talk about it … it reminds people why they went into medicine in the first place.”

Each group has a scholar serving as a facilitator. The Central DuPage Hospital group’s facilitator, Amy Lewin, an English professor at Northern Illinois University, favors books that deal with controversy, the better to spark conversation, like “The Spirit Touches You and Then You Fall Down,” Anne Fadiman’s wrenching true story about cultural misunderstandings over treating a little girl’s epilepsy.

Help in making patients real

Medical schools also have taken note of the value of literature and humanities in medicine. According to the Association of American Medical Colleges, 94 out of the 125 medical schools in the U.S. required studies in medical humanities in 2006.

“There aren’t any patients in medical textbooks,” said Kathryn Montgomery, director of the Medical Humanities and Bioethics Program at Northwestern University’s Feinberg School of Medicine. “There are organs, cells, diseases, drugs, treatments, diagnoses and treatments — but not any patients.” Literature, she said, provides the patients.

Beyond the value of the stories, she said, is that of learning to read analytically. “Medicine is an interpretive activity, just like reading,” said Montgomery, who teaches a seminar on Sherlock Holmes (“Doctors are problem solvers, and Sherlock Holmes thinks like a doc”). “Patients come to you in words, and you have to figure out how reliable the narrator is.”

Dr. Abraham Verghese, the author of the book the Literature & Medicine group was discussing, came to believe so strongly in the connection that he founded the Center for Medical Humanities and Ethics at the University of Texas Health Science Center at San Antonio, where he teaches literature to medical students.

“What a book group does is tip its hat to the complexity of the emotional lives you’re dealing with,” said Verghese, himself a devoted member of a book group that includes fellow doctors.

And in light of doctors’ higher rates of suicide compared to the general population, he thinks it equally vital that doctors nurture their own inner lives.

(He was delighted, incidentally, to hear that the Central DuPage Hospital group had read his book, and regretfully agreed with Jorgensen’s view that Verghese seemed to be slighting his family; shortly after the events of the book, his marriage broke up. “I was caught up, like many physicians, in thinking that the good work I do justified my being absent,” he said.)

One of the strengths of the Literature & Medicine program, Jorgensen said, is that it is open to all workers at a hospital, and thus exposes doctors to other people’s opinions. Doctors may be the top dogs in health care hierarchies, but at this meeting, Jorgensen volunteered to be the next month’s cookie person.

“As a physician I can tell you, we get stuck in our own … experiences,” he said. “By listening to people there, the secretaries, nurses, clergy, you get to see really very different viewpoints.”

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Talking points

Selections from favorite readings list for Literature & Medicine groups:

Drama


  • “Wit” by Margaret Edson
  • “Medical Reader’s Theater: A Guide and Scripts” edited by T.L. Savitt

Novels and stories


  • “Regeneration” by Pat Barker
  • “The Plague” by Albert Camus
  • “You Are Not a Stranger Here” by Adam Haslett
  • “The Interpreter of Maladies” by Jhumpa Lahiri
  • “The Metamorphosis” by Franz Kafka
  • “The Things They Carried” by Tim O’Brien
  • “Tell Me a Riddle” by Tillie Olsen
  • “People Like That Are the Only People Here” from “Birds of America” by Lorrie Moore
  • “Pale Horse, Pale Rider” by Katherine Anne Porter
  • “The Death of Ivan Illyich” by Leo Tolstoy
  • “The Diving Bell and the Butterfly” by Jean-Dominique Bauby
  • “The Spirit Catches You and You Fall Down” by Anne Fadiman
  • “Complications: A Surgeon’s Notes on an Imperfect Science” by Atul Gawande
  • “Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study (Studies in Social Medicine)” edited by Susan Reverby
  • “Refuge” by Terry Tempest Williams

Poetry


  • “Without” by Donald Hall
  • “Otherwise: Collected Poems” by Jane Kenyon
  • “Rehab at the Florida Avenue