Every Patient Has a Story


By Mary Carpenter

A FEMALE patient appears too dejected to speak with medical personnel until finally one physician observes the patient take an elegant fountain pen from her purse. The physician remarks on the pen, saying she recently received a nice one for a gift. The patient asks about the gift pen, enthuses about that particular pen, mentions her membership in a club for fountain pen enthusiasts, and bursts into tears—and talks about how upset she is about a death in her family.

Broadly, “narrative medicine” refers to bridging the “isolation of doctor and of patient [using stories] to help us know the patient outside of one moment in time,” explained Suzanne Koven, primary care physician and “inaugural writer in residence” at Mass General Hospital. Author of Letter to a Young Female Physician, Koven spoke on the panel “Health and Illness Narratives: Harnessing Medical Memoir to Impact a Broken System” at the recent AWP (Associated Writing Programs) conference in Seattle.

For patients, creating a narrative—rather than listing symptoms without context—can help medical personnel seeking to treat them. More commonly, “narrative medicine” refers to formalized training for physicians to deepen their capacity for understanding their patients. Another goal is to help physicians heal themselves—from the stresses of coping with traumatic medical issues, such as during the pandemic, as well as of never-ending work and time pressures, which in turn create the greatest barriers to empathy with their patients.

Evidence-based medicine has the aim of “integrating the experience of the clinician, the values of the patient and the best available scientific information to guide decision-making about clinical management,” writes geriatrician Caroline Fife at Baylor College of Medicine in Houston. But physicians can lose sight of this goal in “the incessant drum beat of the hierarchy of evidence.”

“Can it be that learning how to enter the narrative worlds of our literary texts and visual images can deepen our awareness of patients’ subjective lives? Can it be that the humanities not only humanize but make more effective the care we provide to others? It can be,” asserts Rita Charon, who coined the term “narrative medicine” and founded the Program in Narrative Medicine at Columbia University in 2000. In 2018, Charon gave the National Endowment for the Humanities (NEH) prestigious Jefferson Lecture.

“The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others,” Charon wrote in JAMA. Learning how to read closely and analyze texts— from illness narratives such as Tolstoy’s “The Death of Ivan Illich” to Henry James on the “great empty cup of attention”—can help physicians develop empathetic listening skills to better understand and connect with patients.

To counter stereotypes about “elder patients,” second-year students at New York’s Weill Cornell School of Medicine hear talks from over-80-year-old women—in one case, describing a sexual relationship with a younger man; and in another, a physician’s dismissive “at your age [people have less energy]” response to what was in fact a low-grade infection requiring treatment. In narrative medicine reading groups, one physician admitted to having no training in how to treat patients with disabilities, while another confessed to being judgmental about patients undergoing bariatric surgery.

While lack of time is the reason most often given for physicians failing to engage patients, old clichés reflect important barriers—that physicians “see what they know” and “know what they see.” For orthopedists trained in doing surgery on joints, for example, looking at scans of joints riddled with arthritis tells them that those joints require surgery—with the risk that they focus on the wrong joints or on the wrong cause entirely for a patient’s distress.

For patients wishing to tap into the resources of narrative medicine, one suggestion is to begin an appointment by telling the physician you have a specific number of topics/questions (best to keep that number below five) and then create a storyline for your complaint. Actually writing down a numbered list beforehand can help, so that a busy physician sees you moving down the list. For my knees, which appear arthritis-riddled on scans, I could say, “My knees are not painful but my gait became abnormal after I had Lyme disease, which caused peripheral neuropathy, and that means I have trouble feeling my feet.”

And Lyme disease gave me my first lesson in storytelling. When I couldn’t convince my doctor that my muscle pain deserved her attention, I created and then rehearsed a story: “I go to bed at midnight, but I can only sleep for half an hour before the pain wakes me up, and for the rest of the night, I pace up and down in my nightgown on a public beach, and I watch the clock until I can take the next dose of Advil.” After that, my doctor prescribed doxycycline and ordered tests for Lyme disease—which came back positive a few days later.

—Mary Carpenter regularly reports on need-to-know topics in health and medicine.


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2 thoughts on “Every Patient Has a Story

  1. Alan Rudlin says:

    Spot-on wise advice on how we the patients should be adapting and helping ourselves and our doctors in a badly stressed and overwhelmed health care system. As someone who now always goes in to my appointments with a list, though not always a story linking the points, as Mary suggests I’m going to try to create some kind of narrative on future visits. My additional recommendation to all readers is to create a written note for yourself after the visit on what was said and done during the visit–and then review your notes before your next one.

  2. Jim Roiddey says:

    This is very important as well as true.

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