What Is Narrative Medicine and Why Does It Matter?

The practice of narrative medicine is at the crossroads of humanities and science. It focuses on the needs of patients and caregivers to voice their experiences and for medical professionals to closely listen to and value their patients’ narratives. The art and science of its practice is taught in numerous American medical schools and in continuing medical education courses.

I am the daughter of a physician, so when I first heard about the practice of narrative medicine, it sounded familiar. During dinner-table conversations with my father, he told me that he always asked his patients these questions: Who do you live with at home? Who is your family’s primary caregiver? Have you had medical challenges in the past? Through these discussions, I became keenly aware that the broader story of my father’s patients’ lives—not just what brought them into the hospital or into his office—was of great interest to him.

My father began his internal medicine practice in 1960, and he retired in 2005. Even though my physician-father practiced during an era when doctors had more time per appointment, I believe that he always had an innate understanding of the importance of listening to and reflecting upon his patients’ life stories. Today, that type of understanding is being celebrated and taught throughout the country.

Keen to learn more, in mid-October, I participated in the three-day Narrative Medicine Basic Workshop at Columbia University. The workshop, attended by doctors, nurses, psychiatrists, social workers, and writers, was led by Rita Charon, MD, PhD, who is the Chair of Medical Humanities and Ethics and the Professor of Medicine at Columbia University’s Vagelos College of Physicians and Surgeons and Columbia’s College of Arts and Sciences. Dr. Charon originated the field of narrative medicine, and recently was awarded the 2018 Jefferson Lecturer in the Humanities by the National Endowment for the Humanities. The Jefferson Lecturer is the highest honor the federal government bestows for distinguished intellectual achievement in the humanities.

My Workshop Experience

In plenary sessions and in small group settings, we dove deeply into the three primary tenets of narrative medicine: close reading, close listening, and reflective writing. The practice of these criteria guide building respectful and effective healthcare. In one of my small groups led by Dr. Charon, we read a girl’s narrative of her dying father. The acuity of Dr. Charon’s observations illuminated how subtle but critical details in this narrative expand our understanding of the daughter’s plight.

In the practice of close listening, we learned that the medical practitioner attentively listens to the patient’s telling of his/her ailments and is alert to subtle changes in the patient, like a shift of mood, while simultaneously forming hypotheses about possible conditions. The practitioner is also reflecting on how he or she feels while listening and is considering how these thoughts might inform the diagnosis.

The third tenet, reflective writing, involves asking medical practitioners to write about difficult experiences by sharing what might have been kept shut inside for years. It’s counter to traditional medical training that teaches medical and nursing students and practicing medical staff that in order to remain objective one must impose an emotional distance in their practice and keep difficult episodes to themselves. But in fact, recent data has shown that the process of reflective writing and sharing clinical experiences with colleagues has been both illuminating and healing for medical students and professionals.

Of course, this is a humble summary of a complex practice, so if you are interested in learning more, several resources are listed below. What impressed me the most was Dr. Charon’s belief that the practice of narrative medicine has the power to create more empathic awareness of patients’ conditions, and its practice has the potential to open a gateway to a more humane and improved delivery of healthcare. Wouldn’t that be wonderful?

Resources

Narrative Medicine

Columbia University’s Master of Science in Narrative Medicine

What Can Doctors Learn From Narrative Medicine?

Medical Humanities at Harvard Medical School

Principles and Practice of Narrative Medicine by Rita Charon et al

Faith Wilcox
The Power of Story

This fall I had the privilege of participating in a Harvard Medical School Continuing Medical Education workshop that focused on individuals sharing their personal narratives. The presenters were coping with either a life-changing medical condition or caregiving for a family member who is suffering.

The workshop was created and delivered by Annie Brewster, MD, Internist at Massachusetts General Hospital and Executive Director and Founder of Health Story Collaborative (HSC), and Jonathan Adler, PhD, a Clinical Psychologist, Researcher, and Chief Academic Officer of HSC.

Dr. Brewster spoke about how she kept her multiple sclerosis (MS) diagnosis a secret for years, but later discovered the therapeutic value of sharing her story. Dr. Adler spoke to research that cites that individuals who write and share their serious medical illness experiences have had improved physical and psychological outcomes. He continued by discussing “narrative identity,” a creative process through which individuals challenged by serious illnesses can make sense of what happens to them, and even make meaning out of experiences beyond their control.

The guest speakers, Elizabeth Jameson, a woman living with MS, and Paul, a caregiver for his son who struggles with an opioid addiction, powerfully articulated the power of sharing personal narratives. After Elizabeth’s MS diagnosis abruptly ended her law career, she searched for ways to express herself and to connect with others. She began to create art, and her subject matter was MRI scans of her brain. Elizabeth’s colorful and stunning etchings and paintings show how she reinterpreted stark black-and-white MRI images into creative and often uplifting works of art. Her art is in permanent collections at the National Institutes of Health, UC Berkley, Harvard, and other institutions. Even though she is now a quadriplegic because of her illness, Elizabeth has turned her creative talent to writing and has published articles on patient-centered health care in The British Medical Journal, WIRED, The New York Times, and other publications.

The other presenters were Paul (who doesn’t share his last name) and his son (represented by an actor) who performed Resurfacing, a narrative they wrote together about their experiences as a father who sometimes succeeded and other times stumbled in his role as caregiver, and his son who was in and out of addiction rehabilitation settings for over a decade. The raw honesty with which they recalled their many painful and frightening experiences and the authentic portrayal of their anger, fear, distress, and love rapidly drew the audience into their spellbinding drama. The writing of their narrative was also guided by Dr. Brewster and Dr. Adler, and it was shaped into a play in collaboration with COAAST, Creating Outreach About Addiction and Support Together.

If any of the 100 workshop participants, who were social workers, psychiatrists, nurses, doctors, and about a dozen caregivers and patients, had harbored doubts about the healing power of sharing personal medical narratives prior to this session, there was no doubt that by the end of the day, they were believers.

“Emerging” by Elizabeth Jameson, a solar plate etching.

Faith Wilcox
Expect the Unexpected

My husband and I have a Goldendoodle puppy, Nutmeg, who brings boundless energy and exuberance into our daily lives. I take Nutmeg on daily walks along woodland trails, and as she pauses to sniff everything that has an earthy odor, I slow down as well. In these quiet moments, I absorb the sounds of nature surrounding me. I hear the chirping alarm of a scampering chipmunk, the rat-a-tat-tat of the red-bellied woodpecker on the tree limb above, and the croak of frogs in a nearby vernal pond. The natural world reminds me, ever so gently, that life goes on despite what I once thought after Elizabeth’s death.

Moments later, excited by shouts and laughter of children nearby, Nutmeg bolts toward them. I call her back, secure my leash to her collar, and we walk out of the woods and onto the athletic fields of the town’s middle school. Young teenage girls are practicing passing a soccer ball as they run down the field. On an adjacent field, one middle-school team wearing orange-and-black jerseys and skirts battles against their opponents dressed in green-and-white uniforms. Being a competitive athlete since age seven, I eagerly walk forward to get a closer look at the activity. After a few paces, I stop. My heart begins to beat rapidly. The team sporting green and white is the same hometown team that my daughters played on.

Alex, my five-foot-two, quick and agile, first-born child, played right wing. I can vividly remember her swiftly dribbling the soccer ball toward the opposing team’s goal. Elizabeth, my five-foot-nine, svelte and strong child, was the “sweeper,” the last defender positioned in front of the goalie. I close my eyes, and can see her fearlessly charging her opponents, kicking the soccer ball aside, and then swiftly elevating it above their heads.

I pant with short, rapid breaths. Tears well up in my eyes. How I yearn for those happier times. Nutmeg touches my leg; I crouch down, and she licks me under my chin. I scratch her soft, silky puppy fur for a while. I whisper, “I’m going to be okay.”

Moments later, Nutmeg and I turn away from the players and walk on. I silently pray that these teenage girls will be blessed with healthy and happy lives.

Faith Wilcox
End of Summer

End of Summer

From my window, I watch people jogging, walking, and rollerblading along the Esplanade, an urban park with meandering pathways that follows the Charles River. Sailboats sweep across the sunlit, shimmering waters in a carefree way. It’s Labor Day weekend, and it seems as though everyone in Boston is outside enjoying the last days of summer.

The view from this high-rise on the eighteen floor is as lovely as one would be from a luxury hotel, but this is about as far away from a relaxing retreat as I could be. My thirteen-year-old daughter, Elizabeth, is receiving her first round of chemotherapy at MassGeneral Hospital for Children. To our horror, five days ago she was diagnosed with osteosarcoma, a rare bone cancer that afflicts only 1 out of 250,000 children each year. My once-active, athletic daughter lies still in her hospital bed. Her toy dog “Mutsy” is tucked under her arm and her favorite purple fleece blanket is draped over her to shield her body from the cold air pouring out from the air ducts above. Outside, many runners are shirtless.

Elizabeth, her fourteen-year-old sister, Alex, and I should be shopping for back-to-school clothes and swimming at the town pool before it closes for the season. And yet, despite watching the drip, drip, drip of the chemotherapy fluid flow into her central line, I can’t believe what’s happening. I wrestle between wanting to run out of the hospital screaming and curling up in a ball on this vinyl chair, closing my eyes, waking up later to find out this has only been a nightmare. I do neither. I reach out and hold Elizabeth’s hand. She opens her almond-shaped, hazel-colored eyes, and smiles at me. Her wordless gaze says, “I’m going to be okay, Mommy.”

Life as I once knew it, the future I had hoped for and had even taken for granted, has imploded. All I know is that what lies ahead will require strength, courage, and wisdom beyond what I ever could have imagined.

Faith Wilcox