Narrative medicine: I have heard of that, but what is it? I often get asked this question. As a master’s student of narrative medicine, I am still trying to hone in on the best response to that question.
For many, narrative medicine (NM) is not a novel concept. We have watched movies or read books of doctors helping, listening or learning from patients as they wrestle with their illness. Many writers like William Carlos Williams, Abraham Varghese or Rita Charon have authored stories that convey the art of healing. In Rana Awdish’s “In Shock,” a physician chronicles her journey of becoming a patient in her last years of training.
As the roles reverse, the fractured disparities of doctor-patient interactions become real. She calls upon the need for doctors to be present, “bearing witness to the patient’s pain.” Just like an artist, a clinician should train “to see the negative space on a canvas … The healing potential of medical knowledge is magical. It is also a lie. Medicine cannot heal in a vacuum; it requires connection.”
The alliance we make with patients goes beyond what providers opinionate with just diagnosis, treatment, and plans. Caring for patients is fostered with attentiveness.
In NM, the student learns the skill of dwelling deeply into the literary work by close reading, observing and listening. The close reader studies the elements of “temporality, narrative situation, voice, metaphor and mood” (Rita Charon) and applies this methodology, to “enter into” the patient’s experience. Just like a lens, NM gives the observer the apparatus to focus on the struggle the patient may feel in that fractured, ambiguous space.
While working overseas in the Middle East as a hospitalist in an academic training pediatric hospital, I was rounding on a five-day-old newborn baby admitted for a complicated congenital esophageal atresia. I breezed into the patient’s hospital room. I glanced at the neonate and noted that this baby boy had features of Down syndrome (DS). We ordered confirmatory genetic testing. Days later with the positive results, we told the Bedouin mother, at the infant’s bedside, that her last son of nine children had Down syndrome. Although illiterate, she immediately retorted with: “Is he a Mongoloid?” In the West, the term “Mongoloid” is antiquated and offensive — yet in the Middle East, it remains a commonly for Down syndrome.
After his discharge, I continued to monitor his pediatric care in my clinic. At each visit, the mother persistently quizzed me about his diagnosis. Each time, I would detail his genetic testing, display pictures, diagrams, and karyotype studies to assure her the accuracy of his condition. Yet, she remained unimpressed with my exhaustive details. It was her fifth visit to the clinic, and her recurring interrogation about his diagnosis continued.
Ready to regurgitate my medical jargon, I looked into her charcoal-colored eyes. I paused for a moment. I heeded to her pale constrained face, her furrowed frown, and tense pursed lips — as though she was still angry about this diagnosis. In that instance, I sensed what she wasn’t asking and what she had been wrangling with.
I said. “Mamma, What difference does it make what his diagnosis is? He is your child, your son. He has beautiful brown eyes, soft skin, and a gentle gurgled smile, like an angel. You love him. Care for him the same — if not more. His having Down Syndrome — a disorder, a genetic condition — does not change that.”
She glared at me. Then, blinking quickly her eyes filled, as tears rolled softly down her face. She wept, and I wept with her, but these were tears of joy. She later told me that she could now see him without the label and celebrate his birth. He had brought a special beauty into her life.
So, is NM an amalgamation of medical knowledge and humanism in medicine? Have we lost touch with realness and connections to the lives of our patients? I don’t have the answers just yet. However, I do know that if we practice close listening and observing “like a reader,” we can interface better with the people we care for. As Rana Awdish writes: “… to inhabit that vulnerable space … Patients and families desire to be seen and to be heard.” When we permit ourselves to share a bit of that precarious space with our patients, we may be able to apprehend their story. My answer, thus, is that NM is one methodology that we as providers can integrate the stories of medicine into the practice of it. Stories can heal.
Stories provide perspective. Stories are how we engage with the narrative of our patients. The insight into their lives is revealed from their account. Stories are descriptive, creative, and or exploratory. Stories can be inspirational. The reader’s quest is often to engage with the writer and ruminate on the artist’s purpose. Stories reveal. We often see ourselves in our patients — their apprehensions are not far from our own.
Many are taking NM to write publicly or privately about issues related to taking care of people and the health care system. By journaling and blogging on health care complexities, reflecting on clinical experiences, raising awareness, one advocates to a wider audience. Stories have power. Thus, the narrative of medicine is the art of storytelling in healthcare and its integration into the art of healing. I invite you to share your stories and experiences, in written, visual, or media form. Stories matter.
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