The Gift of Narrative Medicine
Courses on narrative medicine are offered in some premed programs and medical schools. They are an important addition to the scientific coursework because they remind future doctors and nurses that they, and their patients, are human beings who have emotions that need to be tended to. The courses train medical people how to listen and interpret what patients say, as well as notice when patients are reluctant to share something. These courses aren’t offered at every medical school, and generally there is only one course. But it creates an awareness of the gift of listening that strengthens as the years go on.
Rita Charon, who began the genre of narrative medicine at Columbia University in 2000, wrote in her seminal book, Narrative Medicine: Honoring the Stories of Illness, that its goal is to help medical workers “to recognize, absorb, interpret, and be moved by the stories of illness.” I’ll have more to say about her important work in the coming weeks.
Doctors are not auto mechanics and patients are not identical cars produced on an assembly line. Everyone’s body is different because of genetics and how they have lived their lives, the comorbidities they come into the doctor’s office with. It’s not like cancer is a faulty part that can be lifted out and a new part dropped in. People are living organisms, and each body responds differently to the same treatment. When I was going through cancer treatments, my oncologist said that I may have this side effect, or I may not. And if leuprolide, the first line drug, didn’t halt the cancer’s growth, then we’d try abiraterone, a second line drug.
Beyond writing clinical reports and research findings, more stories are being written today by doctors and nurses about their struggles to be perfect in their diagnoses and treatments. There are memoirs by patients writing about their experiences in the medical system that reveal how they are coping, which procedures had a human touch, which ones felt cold and institutional. There are novels that explore issues of suffering and dying, and poems that dive into the emotional heart of chronic illnesses. Good medicine deals with the whole person – body, mind, and emotions. Each has to be addressed for full health. Narrative accounts illuminate this unity of health concerns.
Patients are not case numbers in a clinical trial to be poked and pushed like chickens to produce test results. Doctors and nurses need to partner with patients on treatments plans, and for this, they have to know what patients value. A diagnosis should not be based only on observable medical details, but include what is going on inside the patient physically and emotionally. Doctors aren’t aware of this interior reality until they ask the patient and listen to them as they go down the steps to what is really bothering them and they reach their emotions. Patients want to feel empathy from their medical care providers so that they believe that they will do their best. Nurses typically do better with listening than do doctors. Hopefully this is by default and not by design, although the business model of medicine contributes to the design flaw.
There is a lot of ground to be covered, but only so many books that can be assigned in one course. Some courses include an assignment where medical students have to write their own narrative when they struggled with a difficult case, using either prose or poetry, to help them realize how writing brings out hidden or overlooked details about their own struggles.
One thing I’ve noticed is that there are relatively few accounts written by male patients. I think the reason for this is because writing about having something like cancer requires men, if they are going to say anything of importance, to share their emotions, vulnerability, and being physically compromised, and men don’t like to reveal these to others.
The reading list for a course at one medical school includes Audre Lorde’s The Cancer Journals (1980, breast cancer), Margaret Edson’s play Wit (1995, presentation of a patient in a clinical trial for ovarian cancer), Paul Kalanithi’s When Breath Becomes Air (2016, a doctor writing about having lung cancer), Shakespeare’s King Lear (mental illness), and Tolstoy’s The Death of Ivan Ilyich (terminal illness).
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