Narrative Medicine

Every January health clubs and the local Y suddenly are filled to capacity with shiny-faced, energetic newbies, or steely-eyed returnees—resolving that this will be the year they: lose weight, lower cholesterol, start a regular exercise regime and so on. If one has experienced loss or illness any time in the previous year, the new year sometimes serves to allow a separating from the old life, a moving forward from the grief, a healing of the soul. 

I lived in the ICU waiting room for 16 nights and days over Christmas and the New Year of last. I doubt that reading poetry would have helped my state of mind in the sudden hospitalization and ultimate agonizing loss of my husband, but now—a year on—reflecting on illness, loss, and death through poetry, prose, and art, seems a meaningful way to address the unspoken.

Narrative medicine and medical poetry seeks to break traditional barriers between doctor and patient, caregivers and the cared for, their families, their survivors. It combines the humanities and scientific thought; and for those in the medical profession—it provides a different framework for discussing and analyzing medical practice. 

A leader in this field is Rita Charon, director of a program in narrative medicine at Columbia University. The idea came to her as an internist, when she was struck with how sickness unfolds in stories. Dr. Charon established the Narrative Medicine Program at Columbia University’s College of Physicians and Surgeons in 1996.

Her concept of narrative medicine came from a point of “revolutionary” inclination that was a part of 1960s upbringing. At that time, she wrote that medicine seemed an elitist part of the establishment. “The idea of medicine at that point was—it seemed to us—part of what was wrong in the country. … It was not terribly committed to giving power to patients, and to hearing what their desires were. And it was at that time, in the ’50s and ’60s, more common practice where doctors would decide things and impose them on patients.”

Empowering patients, as well as physicians and other medical staff to understand a more full narrative, has been her life’s work now. 

“Illness exposes. In the presence of illness you are down to the “floor” of who you are,” Charon said at a TedXAtlanta conference. “It is in the dying, in the limits of the life—that we have our meaning. And that we pour ourselves into those things that endure, the family, progeny, work, art dance, life, play….” 

Closer to home, Donna Doyle, poet, teacher, and a supervisor of the Preston Medical Library at the University Of Tennessee Graduate School Of Medicine, firmly believes so. The Knoxville native has been awarded the New Millennium Poetry Prize, the Libba Moore Gray Poetry Prize, and the Tennessee Mountain Writers Poetry Award. Recent anthology publications include Southern Poetry Anthology Volume III: Contemporary Appalachia, and MOTIF 3: All the Livelong Day – Writings about Work. 

Her medically-based poems have appeared in the Journal of the American Medical Association (JAMA), which generally accepts only 7 percent of 750 poems submitted annually. Doyle shares some of what brought her to merging writing with medicine in a special Q & A with Smoky Mountain Living. 

SML: Has poetry/prose writing always been a part of your life?

Donna Doyle: In some sense, yes. Even as a child, I scribbled in books and believed I was writing. Throughout adolescence and young adulthood, my writing felt like a flirtation. I fantasized about becoming a best-selling novelist. I also wrote a lot of bad poetry. Then, as a non-committal English major in college, I was required to settle down and declare a concentration. By then, I had no desire to write fiction, and I knew I didn’t want to teach. After one intro level course that covered both fiction and poetry writing, I was terrified of writing poetry. Maybe I was especially afraid of writing poetry in an academic environment. I thought poets had to be mysterious and that poetry should be esoteric. So, it was being backed into a corner by fear that led me to take my first poetry writing class. The first poet I read in her class was Sharon Olds. I wrote what I considered to be my first poem. And for the first time in my life I felt this is what I want to do.

Why did you turn to the writing when your father was ill?

I wrote letters to my father after he died. But actually, I didn’t write about my father’s terminal cancer until about ten years after his death. The poem I consider to be my first real poem (10 in college) was inspired by that loss. During his illness, I kept a journal because I felt scared and alone. Writing has been a way to have a conversation with a deeper part of my self—to finish conversations I was not able to have years ago.

How difficult was it to get poetry in these journals? Did you feel there was anywhere else for them to appear? Please explain why you wanted them in JAMA?

I hope this doesn’t sound dismissive, but the difficult part of poetry writing has always been the more business-like side—researching publications, revising, submitting, and writing cover letters. Writing comes fairly easy. I get up around 5 every morning, and I write. Recently, I’ve discovered a way of revising that is working well for me.

JAMA was my first choice for the poem Stroke. It was very wel- received by the poetry editor, Charlene Breedlove, and I valued her communication. After it was published, I was amazed by the number of emails I received from people who found the poem meaningful. So often, poetry publishing feels like throwing a message in a bottle out into an ocean. I knew JAMA published an email address with bylines, but I wasn’t prepared for the responses. This response - along with valuing the skills of Ms. Breedlove—led to me sending three more poems.

Why JAMA? Well, JAMA is the New Yorker of medical journals. Their publication is evidence of the importance they place on the humanities. Their covers feature beautiful artwork. And, who reads JAMA? Healthcare professionals. Ultimately, I want them to have a glimpse of what patients and caregivers experience and to contribute to their growth.

Of course, poetry matters to people who read poetry journals. I want poetry to matter to a more diverse audience—to be accessible beyond the academic and solely literary worlds.

There are other journals that publish medically-themed poetry. My challenge will be not to give all my poems to JAMA—to share some with literary journals as well.

You have taken this on as a life project; please explain the concept of “narrative care” and how and where it fits into medicine or where it should fit into care-giving and wellness.

I think narrative medicine took me on as a disciple. There’s an especially lovely Pablo Neruda poem where he writes about being “found” by poetry. 

Rita Charon is the founder and director of the narrative medicine program at Columbia University. She is a physician who obtained a Ph.D. in English when she realized how central telling and listening to stories is in the work of doctors and patients.

Basically, narrative medicine strengthens clinical practice. Every patient has a story. Narrative competence helps develop the ability to recognize, absorb, metabolize, interpret, and be moved by the stories of illness. Doctors, nurses, social workers, and therapists can improve the effectiveness of care by developing the capacity for attention, reflection, representation, and affiliation with patients and colleagues. 

There are numerous ways to approach teaching and practicing narrative medicine. Reflective writing can be a healing practice.

There’s research that supports the practice of family members keeping an ICU journal to share post-hospitalization as a means of helping decrease PTSD related to the ICU stay.

 A while back, I met a doctor who plays harmonica for his patients.

There are so many ways to make the patient-physician encounter more humanistic.

I try to bring poetry into my work environment at Preston Medical Library by organizing related events. For example, every April during National Poetry Month we celebrate Poem In Your Pocket Day by handing out pocket-sized poems.

Also, I work with a doctor on various levels - workshops with interns, mentoring medical students, etc. We’re going to introduce a monthly literary series which we plan to launch in April.

In what way do you suggest that poetry is healing, and would be “useful” in any case?

While poetry is important to me, I don’t assume it will be something that “works” for everyone. For one thing, not everyone is open to reading or writing poetry. It can be a significant part of integrative and palliative medicine. So can the practice of yoga and tai chi.

The poems in Tess Gallagher’s book Moon Crossing Bridge were written after her husband’s death. She has said that she wrote it in order to “sustain the grieving process long enough to absorb the loss.” Her goal was not to absolve her grief but to attend her grief.

Gallagher also wrote a deeply profound essay—“The Poem as a Reservoir Grief.” In it, she confronts and challenges how people typically address grief by running away from it. She thinks poetry can be a place to slow down and be attentive to feelings—similar to what Joan Didion refers to as “staring at the rattlesnake.”

In terms of healthcare professionals, reading or writing poetry is not the only way to increase awareness and empathy. Reading and discussing poems, however, can feel easier than talking about what they face with their patients.

I can only attest to how poetry has been healing and useful to me. It’s a part of how I naturally process my world, a way of serving as witness, and a way to communicate in a deeper way. At the same time, there are moments when I want to run away from poetry writing…take a break…write a silly children’s book. But, ultimately I feel called to write poetry.

After poetry readings, people tell me how touched they are…how they identified or connected to what I wrote. Some people thank me—very simply and directly. For them, maybe the poetry I’ve read is useful in affirming that it’s okay to share feelings in a room full of strangers.

In a sense, this interview qualifies as a sort of narrative medicine…don’t you think?

How easy was it for you to turn to writing after your various familial illnesses? 

The challenge of writing is finding and devoting time—quality time—to it. It requires significant emotional energy and can take a toll on physical energy. Every day when I prepare to write, I’m aware it’s possible the process will lead to prodding a wound—going where the pain is. A friend once told me, “When you write, you open a vein.” 

That’s a lot to ask of myself, and there are times I don’t expect it—when life is presenting me with ongoing challenges. Like during my husband’s hospitalization. Not long after he returned home though I felt it was necessary to establish a regular writing routine. Maybe that felt like a small bit of control I could exercise.

Interestingly, the only time writing did not come easy was after I was hit head on by a drunk driver. I was worried I’d never write again. That I’d lost my voice. Several months later, a witness told me he would never forget the sound of my scream. Something in me opened and lifted. I thought, “So, that’s where my voice went…” It’s not very rational, but I don’t know quite how to describe or explain it. I started writing again.

How have people in the medical industry, particularly doctors, responded to your narrative care concept? Please expand on this.

The response has been mixed. 

One of the scariest things I’ve experienced was leading a poetry workshop for medical residents. Their attendance was mandatory. It went fairly well. They seemed more open to reading poetry than to writing poetry—although I did get one haiku out of a resident.

I’ve received positive feedback from doctors who have read the JAMA poems.

Ultimately, poetry is received by doctors similarly to the way it’s received by any group. Some are receptive; others aren’t. 

Overall, poetry can help provide balance and help us pay a different kind of attention to the world and to each other.

When my father was dying, I went to our family doctor complaining of tiredness, loss of appetite, weight loss—symptoms similar to what my father was experiencing. The doctor’s advice? He told me to get up early every morning, go for a run, and then return home and prepare breakfast for my father and me.

Did he read or write poetry?

I don’t know. But, in some way his “prescription” for me helped me become the person…the poet that I am.