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ALUMNI QUARTERLY - winter 2008
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English translation

Des mots our guérir les maux

Measurements and charts. Blood pressure, heart rate, insulin level, antibodies. These are the fixtures of a physician's life. Steeped in science and technique, doctors are required to discern, in short order, where a patient's illness lies and how to fix it. But the richness of the patient's story can be lost amid the numbers and hard data.

All medical encounters include a cast of players -- doctor, patient, family, nurse -- each with their own strong opinions and points of view. How much of competent care relies on being able appreciate what others may be going through? Health workers and students are turning to methods of narrative medicine -- writing about their patients and their experiences as practitioners -- to ensure that they have a clearer understanding of situations that may be rushed and emotionally taxing.

Some doctors need no urging to put thoughts to paper. Maureen Rappaport, a professor of family medicine, has always wanted to write. When Rappaport was a student she decided, "I'm going to go to med school so I have something to write about." She quotes Anton Chekhov with a laugh: "Medicine is my wife and literature my mistress." Chekhov, surprisingly, from the vantage point of our times, wrote to supplement his income as a physician.

Caption follows Maureen Rappaport

A published poet and short-story writer, Rappaport started attending writers' workshops and summer seminars at Ohio's Center for Literature, Medicine, and the Health Care Professions about five years ago. She's inspired by the characters in her practice ("Often you write about the patients who are the most difficult"), and her home-care visits. "When you're actually in someone's house, it's very intimate experience. You see their pictures, there's a lot more going on, a lot more texture. That's been a very rich source for me." She also credits her migraines as a source of creativity. "It's affected me in a positive way -- it makes you more aware. Someone once said 'Being sick is probably the best thing that could happen to a doctor.'"

Writing was a boon for her work as a physician, Rappaport says. "I realized there was therapeutic potential for myself. It excited me." And helped her through rough periods at work. "I realized, the more conflict there is, the better story I'm going to get. So if things go wrong, great! I'll have a better story."

She found that writing about her practice helped her deal with the effects of having people come to her with problems that she couldn't always solve. "Sometimes I felt their problems really were sticking onto me -- bad energy coming into me in a sense. So this was a way of letting it come out. By rephrasing it or looking at it."

The literary arts can also help those at the other end of the stethoscope. Professor Frank Carnevale, head nurse of the Montreal Children's Pediatric Intensive Care Unit, uses children's literature to help kids and their families. "I work with a lot of kids who are incredibly distressed, and I use different methods: hypnosis, relaxation and literature."

Caption follows Frank Carnevale

Children's literature is a form of distraction and a source of meaning that can captivate children and get them focused on their own healing, Carnevale says. "There was one girl who had severe pain in her feet, and I used stories to bring her comfort, like The Secret Garden [in which the main character is bedridden]. The family said the story was very useful in setting goals for the girl to regain mobility and was a source of inspiration."

Carnevale's own narratives of difficult cases, for instance that of a severely burned 14-year-old Inuit boy with whom he became very engaged during his care, gained him some renown in the field. "I had a period in my career when people came to me to be the keynote speaker at conferences. I could have done that full-time had I wanted to."

But he became ambivalent about medical storytelling. "I began to feel I was sensationalizing. I thought I was giving insight into the cases, but they became spectacles." There's a side to narrative medicine that can be more about self-absorbed catharsis than healing, he says. "Any time you use narrative there is an element of that -- even when you're struggling with the self-indulgence, it's still self-indulgent."

Nonetheless, Carnevale believes that clinical stories can be illuminating and helpful to others, and struggles to be true to the events and his own responses.

Storytelling is integral to medicine, explains Professor Stephen Liben, a pediatrician. "A lot of our existence in medicine is listening to people, reframing their story, then feeding it back to them." He began to look at narrative as a therapeutic tool in medicine about four years ago, having recognized that something was missing from his medical training.

"Who we are is an integral part of what we do, and we undervalue that at times in the formal medical curriculum. And it isn't just touchy-feely stuff -- how to improve the self is directly related to the ability to care for others. In the end it isn't that you become a more happy person -- that's a great by-product -- but that you're able to deliver better care, by listening to people, hearing where they're coming from."

Caption follows Stephen Liben

Liben took a year as a Faculty of Medicine teaching scholar to develop a seminar for fourth-year medical students using plays, films and literature to get the students thinking more deeply about the challenges of becoming a healer. They cover topics such as patient suffering, death and dying, and medical mistakes.

"In one of the classes, called 'Narrative Ethics,' students are presented with a typical case history we prepared for them, and they have to make a decision. Do they agree with the parents about not doing a life-saving liver transplant, or do they agree with the doctors who insist on the transplant."

Then Liben shows students a film of the case (of the parents, children and doctors) in which it's clear that the doctor's side is biased. "When they have more information they see that the case narrative I gave them was actually very manipulative and skewed."

Liben then asks his students to pick the viewpoint of someone other than the doctor and write what their summation of the story might be. "One of them picked that of the little baby, one the sibling, another the mom, the dad. One picked the well child in the clinic who had a successful liver transplant.

Caption follows Beth Cummings

Student Beth Cummings appreciated Liben's seminar for the opportunity to reflect on doctor-patient relationships -- rare in her busy schedule. "The seminar helped me understand that although the person's medical illness may be central to our perspective, it's not central to them. Most of the time, most of the day, most of the year, they are not a patient."

Cummings adds, "Rather than pretend we have the same goals and mindsets, we have to know where we're coming from and other relevant aspects. Unless we understand our own biases and the biases of our patients, we won't be able to get across to them."

Rappaport is working to bring these narrative techniques to her residents, who are in a hectic period of their lives. "We change culturally by going through medical school and being taught medical language." She says that, typically, medical students are perfectionists who are given an impossible task. "You can't possibly read all these things and do everything. You get all these imperfect patients coming in who don't fit the model. If only you were in a hospital where the patients knew how to behave like patients! Where the diseases knew what they were doing!"

When Liben was designing his course, he found examples in which students' writings revealed much about their experiences. "What comes out is that we don't often treat our medical students like adults, or we abuse them in a hierarchical way, or don't respect them or verbally abuse them," he says. "Or the woman that they're treating might remind them of their grandmother who died a year ago, and that's hard for them and there's no one to talk to about it, or what it means to care for seriously ill people."

Then there are the patient-written stories. Although those have been with us since the start of literature, bookstores now have entire sections devoted to these tales of patients overcoming the disheartening odds of breast cancer, anorexia, quadriplegia, amputation, disfiguring surgery, depression. Rappaport calls these stories modern-day myths that address life's mysteries. "It's the hero's journey, there are dragons."

These can provide comfort to the ill and their families. Carnevale adds, "For little kids, who may have a sibling dying, [literature] can help with understanding death, life, and give a sense of meaning." As well, patients' stories make it easier for health workers to understand a foreign situation.

Liben says these stories can help "when it comes to things like appreciating dignity for someone who is incapacitated, like many of the children I see are, or severely handicapped. You ask yourself what's the quality of their life? What's a life worth living? And through reading and writing about those who have been very handicapped, who have been able to write, or the narrative accounts from parents or loved ones, the question of what is human comes up. What does it mean to be alive?

"There're a lot of different ways of seeing the world. Life still has value even if you can't be functional, autonomous or independent. Medical professionals often value traits they see in themselves: highly functioning, aggressive, sometimes overly intellectual, very independent. The same characteristics that bring someone to practice medicine may make it difficult to accept less than fully able lives."

Although an empathic relationship can allow for better healing, entering into these patients' stories and their suffering can be exhausting, especially if not supervised and appropriately structured. Reading about how other physicians have struggled with these issues helps, Liben says, along with learning to live with the uncertainty and ambiguity of medical situations.

"How do you let yourself enter into the person's suffering to appreciate enough of their story to help them, and at the same time not allow yourself to be overwhelmed? How do you find a balance between being empathic and not becoming ineffectually paralyzed by the suffering you see?"

Liben adds, "You can choose to enter into the patient's story and there's a richness there. Or you can try to avoid it. But the suffering and pain of others will inevitably affect you. It's true there's more suffering when you enter into such empathic relationships, but there's also more depth, more meaning and more possibilities for healing."

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