Many physicians have answered the call, “Is there a doctor in the house?” But in the view of ACP Member Rita Charon, MD, PhD, one of the founders of the field of narrative medicine, physicians must answer by looking deeper than fixable health problems.
“Beyond the bleeding and the seizing, we need to see the complex lived experience that persons come to us with as they face health problems,” she said in October 2018 while delivering the Jefferson Lecture in the Humanities in Washington, D.C. “If we do not see this complex lived experience, we miss the very reasons they've come to us.”
The National Endowment for the Humanities reports that this lecture is its most widely attended annual event, as well as the highest honor the federal government presents for distinguished intellectual achievement in the humanities.
In committing the 2018 lecture to medicine and the humanities, the organization made a powerful statement, said Dr. Charon, who is the founding chair and professor of medical humanities and ethics and professor of medicine at Columbia University Irving Medical Center in New York City. “We in the humanities are, and I think this is subversive, reappropriating the body from the sciences, who have kidnapped it.”
She explained that as an internist, she must pay attention to signs and symptoms of disease in the body, but at the same time, the framework of narrative medicine allows her to also behold the patient's unique situation, to hear his or her story, and to imagine the narrative world being described.
“I catch the denoted and the connoted. I catch the abstract and the concrete, the real and the imagined,” she said. “That allows the patient to feel heard, to feel recognized, to enter whole into care.”
During her lecture, Dr. Charon described three skills of narrative medicine in practice: attention, representation, and affiliation.
1. Attention to the patient
To enter a patient's narrative world and appreciate his or her suffering, the physician must become absorbed in it, said Dr. Charon. “As I sit with patients, I do all I can do to donate to them my full attention. … Then I listen to the plot of the story and the form of the story, the course of events in whatever order the patient tells me. I notice the images, the temporality, the spaces described, the stuttering, the silences, the tears,” she said.
But it's important not to identify with the patient. “I'm not saying, ‘What it would be like for me to be in this situation?’ That's self-involved,” said Dr. Charon. “Instead, the question is, ‘What must it be like to be there?’”
Physicians must then fulfill the duties they incur by hearing the patient's narrative account, she said.
“After this intensive listening (we call it radical listening) and after examining the patient, checking the clinical information, and making decisions with the patient, I write down what we did—or what I think we did,” said Dr. Charon.
2. Representation of the patient
After writing in the electronic health record, Dr. Charon has gotten into the habit of turning the monitor around toward the patient so that he or she can read what was written. “I also turn the keyboard around and invite the patient, ‘Please add what you think you'd like to add, because this is a story that is about you,’” she said. “We can both share in this experience of writing toward the discovery of what it is that we're telling.”
Patients are enthusiastic about contributing to their own stories, and they will sometimes correct errors or mention aspects of their life that were omitted, such as childhood trauma, losses, hopes, and desires, Dr. Charon said.
“All of this has a way of getting into the medical work that we do, and without my narrative medicine routines, these aspects just would not become part of our care,” she said.
3. Affiliation with the patient
Finally, the goal of care is affiliation, Dr. Charon said. “These narrative skills of attending and of representing equip us to accompany the patient, to ally with the patient, to be on the patient's side instead of solving the problem and then moving on,” she said.
Dr. Charon highlighted the importance of affiliation using a perspective written by one of her former students, Anna DeForest, MD, MFA, and published in JAMA in December 2017. In the piece, Dr. DeForest describes witnessing a scene in the ICU as a medical student. A man had crashed his car into a tree and was brain dead, and when his Spanish-speaking father asked through an interpreter, “How did it end?,” the attending physician began to describe the effects of swelling on the brainstem. When the father asked again, Dr. DeForest jumped in: “It was painless,” she assured him.
Both physicians had cared for the patient and had known the sheer impossibility that he had been conscious during the trauma, Dr. Charon noted. “Yet she knew, or could imagine, what the father was asking,” she said. “It was her literary skill, I suggest, that gave her the capacity to read and respond to the father's ravaged face.” Even after death, affiliation allows doctors to be invested in the patient's predicament, Dr. Charon said. “We refuse to abandon the patient.”
In closing, she emphasized that the practice and study of the humanities uphold the inviolability of the patient-physician relationship.
“Even in a time of telemedicine and virtual medicine and artificial intelligence and robots, it is the humanities that will protect that singularity against the facelessness that some of medicine seems headed for,” Dr. Charon said.