Her head was wrapped in a bright orange and yellow tie-dyed scarf, a material that looked silky and shiny. The dark circles under her eyes resembled bruised clouds as she muttered, “medullary carcinoma.” She used this term (instead of the layperson’s “breast cancer”) because I was wearing a tie like some oncologists in this pre-fab steel building. But I am not a doctor.
I explained I was here to facilitate a reading and writing workshop. She joined the other 10 people seated around a table in the cancer center’s lounge as I passed out a poem by the late Jane Kenyon: The sick wife stayed in the car / while he bought a few groceries. What kind of cancer would you say she had?
That is a narrative medicine question.
What is narrative medicine?
We humans have been telling stories about healing for as long as we have had language. As a formal discipline, narrative medicine began in the 1990s at Columbia Medical School in New York City. Rita Charon, the current executive director and one of the founding faculty members, describes stories as little boats that we use to navigate the treacherous waters from the kingdom of the well to the kingdom of the sick and back again. As Columbia’s website states, “Medicine practiced with narrative competence is a model for humane and effective medical practice.”
Columbia offers a master’s degree in narrative medicine and requires all third-year medical residents to engage a curriculum that would normally be found in the English department. Graduate students in literature are taught to read not only what a narrative is about, but how it has been written. The parallel is that doctors learn to interpret not only what a patient says, but how she says it. Like a good reader, a doctor will then be equipped to fill in the gaps of the story using X-rays and blood tests, of course, but also wondering why, for example, a patient is wearing a fiery headscarf. Charon and her colleagues believe narrative medicine will lead to a more cost-effective and holistic approach to healthcare, which will save resources and lives.
I am not a doctor. My involvement has been through the master’s in writing program at Lenoir-Rhyne University. The stated goal is “heeding the call for narrative in a fragmented world.” As such, the program is called “narrative healthcare” in order to be offered to more professionals, such as chaplains and other faith leaders, music and art therapists, and storytellers of every stripe. All students develop the skills to close read a text, paying attention to such literary devices as form, plot, time and narrator. There are no meaningless words, no innocent choices for punctuation marks! I first became familiar with the concept that every word matters through learning the art of biblical interpretation. At Union Presbyterian Seminary, I was taught exegesis, that is, “to take out information” from a Scripture passage as opposed “to reading in” my own interpretation (what is termed eisegesis). Recognizing and appreciating how a story is built allows a writer to make her own literary constructions stronger, whether penning novels, poems or sermons.
I am a pastor in a church filled with people whose hopeful faces are shadowed with anxieties about illness – people like those in your community or workplace. I was drawn to pursue narrative medicine because of our cultural crisis of listening. Don’t we live, work and try to relax in an increasingly fragmented world? Doesn’t it seem that we are losing the capacity to attune to the person before us? We may have the best intentions, but we hear what we expect rather than remaining open to what is told. Narrative medicine contends that being heard is a fundamental human need. For all the marvelous – and yes, miraculous – developments of modern medicine, I do think we need to learn to listen if we are to heal and to be healed.
Why should we listen to patients’ stories?
The 12 doctors were seated in harsh metal folding chairs behind a long rectangular table lined up from one end to the other. This was a continuing education event, so they were in collared shirts and blouses. No lab coats. No stethoscopes. No smiles either. I sat before them at a very small table and ventured, “Why should we listen to patients’ stories?” The skepticism I had sensed now flooded into the open. One participant protested that he doesn’t need any “hand-holding advice” from someone like me. Another exclaimed, “I can save a person’s life, but if I don’t remember the name of her cat, then she’ll give me a bad online review!” I tell them about a heart surgeon who blasts Led Zeppelin’s album “Houses of the Holy” on full volume in the operating room. When asked why, he winked at me and said, “Because I’m that good.” And you know what? I want the person cutting open my loved one to have that kind of confidence! Several doctors uncrossed their arms from their chests, a few more chuckled softly.
Next, I presented these dozen medical professionals with an excerpt from an essay by David Foster Wallace in which he describes a 7-year-old boy who was the honorary coin-tosser for a tennis final at Wimbledon. The child had a rare form of cancer. This is the only information about his condition that the author gives, but as soon as the doctors had set their printed copies down on the conference table, they dove into the waters of diagnosis, exploring what kind of cancer this might be. Ten-dollar Latin words were flying across the room like arrows!
I tell them: Wait, what’s on the page? What’s written in the text in front of you?
They look again, reading slowly this time. An older gentleman with a full head of shock white hair and pencils cascading out of his shirt pocket wonders out loud why so much ink has been spilled about this patient’s mother. She is not sick, yet more sentences are devoted to her than her child! See how she had to take her child to countless radiation appointments? Why would Foster Wallace make that a part of the story?
That is a narrative medicine question. I smile. And the doctors lean in.
Facilitating close reading
When practiced by medical students in residency, narrative medicine seeks to inculcate the narrative skills of recognizing, absorbing, interpreting and being moved by stories of illness. This “movement” involves establishing a healthy distance from the patient, which would allow diagnosis and treatment, yet also seeing the patient “up close” as a person – not just an illness.
As Saint Augustine quipped, it is solved by walking. We must amble slowly and tread softly through a story. We all approach a text with opinions, consciously and unconsciously, that have informed us or, more literally, have been formed in us by our own experiences. The best of us are eager yet flawed readers.
I’ve developed a process for facilitating close reading, which I use whether I’m in a hospital, classroom or church setting. First, I have workshop participants read a small segment of text that, most likely, no one has encountered. Without any biographical information or context, we must consider only the words on the page. Each reader highlights or underlines key phrases or aspects of the text that capture her or his attention. Then, we break into small groups of three or four and share these insights. I encourage each participant to write questions raised and opinions offered in the blank space on the page around the excerpt. Like a text of the Jewish Talmud, the original narrative is quickly surrounded by other writings, some of which might contradict. No effort should be made to harmonize them. Just get every possibility on paper. We reconvene and each small group reports back to the whole. Finally, participants are given a reflexive writing exercise that, while stemming from the text, is an invitation to explore their own stories. These reflections are shared if the authors are willing to read.
Narrative medicine is a process of learning “deep listening” by honing into a story and then onto the faces of fellow readers. Community is created as the text is connected to the lives of participants. If we are indeed experiencing a cultural crisis of listening, then it would follow that we are desperately lonely – perhaps never more so than when we become ill. Narrative, then, is truly medicine. Care of health should be a communal activity. At the close of that recent workshop, one doctor reflected that it was as though all the parts of a choir were singing when she had thought each person was performing a solo. We just needed to train our ears to hear the harmonies.
Words, stories and emotions
A veteran surgeon chose to write about the first stitching of his career, which was for a man who had died on the operating table. On that day, he wrote, other professionals in that operating room wanted him to hurry up. But, he took his time. Everyone else was clearing their throats and tapping their shoes, but this surgeon was thinking about the patient’s family in the waiting room: What if they asked to see the body of their loved one? The question hung in the air and, when he had finished reading, I started to say how beautiful and how brave, but I choked up thinking of my parishioners and how much this writing would mean to them. “That is so good,” I managed.
By the end of the workshop with patients who have cancer, every person felt empowered to share what they had written in response to the question, “What kind of cancer do I have?” Emotions erupted into words: I have the kind of cancer that barks like a dog at your loved ones when they come to visit; the kind that chews its finger nails until it tastes its own blood; the kind that vomits a $30 filet mignon that had been cooked just right.
Remember our friend with medullary carcinoma? Underneath her brilliant, fiery headscarf, she proclaimed, “I have the kind of cancer that makes me want to put myself back together, piece by piece, with every word.”
Living waters of compassion
During a calm moment together, perhaps leaning against a patient’s closed door or adding creamer to our coffees before a water color painting in the lobby, I am in the habit of asking doctors about their sense of call to their profession. Without exception, every doctor claims to have entered medicine with the goal to help and to heal. They want to make a positive difference in people’s lives. “After all,” one recently shared, “the greatest answered prayer is for health, don’t you think?”
But doctors can lose their sense of empathy. Danielle Ofri, a physician and author, defines empathy as the ability to see and feel from another person’s perspective. She cites the oath of Maimonides: “May I never see in the patient anything but a fellow creature in pain.” Yet the pressures upon healthcare professionals are intense. Medical training consists of long hours with even longer “scut lists,” or procedures to perform. Residents and interns race across the hospital, white coats bulging with enough medical supplies to stock a cabinet. Their goal is to work in the most efficient way possible. As Ofri puts it, “Everything that empathy requires seems to detract from daily survival.” The pace may slow down once students graduate to private practice, but the primacy of pragmatism still rules. Insurance coverages and liability concerns, not to mention a crowded waiting room, require enormous reservoirs of time, energy and attention. The common result is that my parishioners complain that their doctors only look at the computer screens – never at them. In the hospital, a doctor might say to the half-circle of medical students clustered in the room in between the beeping machines, “The patient is a 67-year-old Caucasian female who presented with sinus tachycardia,” instead of addressing the woman in the bed with an oxygen mask to her face, holding the hand of her partner, “Mrs. Rosemary, it seems your heart was beating pretty fast.”
The healthcare system is a pressure cooker. But remember why women and men feel called to the care of health. I have discovered that doctors, like weary desert travelers, yearn for an oasis where living waters of compassion can flow from the kingdom of the well to the kingdom of the sick and back again. This looks like the kingdom of God to me.
Andrew Taylor-Troutman is the pastor of New Dublin Presbyterian Church in Dublin, Virginia. He is the author of three books, most recently the novel “Earning Innocence.” His wife, Ginny, is the Presbyterian campus pastor at Virginia Tech. They have two boys, Sam and Asa.
Further reading:
“Narrative Medicine: Honoring the Stories of Illness” by Rita Charon, Oxford University Press
“What Doctors Feel: How Emotions Affect the Practice of Medicine” by Danielle Ofri, Beacon Press
A quick search for “narrative medicine” on YouTube will lead to insightful lectures, including TED Talks by these two authors and more.
Program information about narrative medicine at Columbia may be found at: sps.columbia.edu/narrative-medicine
Information about the narrative healthcare graduate certi cate program at Lenoir-Rhyne, which is available to part-time, long distance learners, may be found at: lr.edu/narrativemedicine
