Narrative medicine seeks the story behind the illness

Narrative medicine puts the humanities and the arts in the service of health care not just to cure patients, but to make sure they are not all alone in their illness.

A brief, chance encounter with a patient many years ago forever changed the way ACP Member Rita A. Charon, MD, PhD, approached her role as an internist. Dr. Charon had dropped by her office at Presbyterian Hospital in New York City before heading out of town to attend a monthlong workshop on literature and medicine.

While she was rushing about attending to last-minute details, a young woman asked her to sign paperwork approving disability leave from her job due to chronic fatigue. Dr. Charon recognized the woman from a previous visit and recalled sending her home with a prescription for iron pills, along with instructions to check back in a few months.

Narrative medicine harnesses knowledge from the humanities and the arts to make sure that patients do not feel alone in their illness Image by Anita Sagastegui
Narrative medicine harnesses knowledge from the humanities and the arts to make sure that patients do not feel alone in their illness. Image by Anita Sagastegui

“I told her I couldn't sign off on disability for an iron deficiency,” Dr. Charon recalled. “I was really rather brusque, something I felt guilty about later.”

That unsettled feeling led Dr. Charon, the originator of the field of narrative medicine, to choose this patient as the subject for her first writing assignment at the workshop. Asked to create a backstory, she imagined the woman as an aspiring young model who wanted disability so that she could come to New York and audition for jobs. The experience made her wonder about her patient's true circumstances.

“At a follow-up visit, I apologized for my brusqueness when we had last met. I asked her to tell me her actual situation, and it turns out that she was escaping an abusive uncle who had assaulted her for years; she was trying to get herself and her younger sisters to safety,” said Dr. Charon, who is also a professor of medicine at Columbia University in New York City. “I called the domestic violence service. The family went first to a shelter and then got help to move toward ongoing safety. It changed their lives.”

In order for that story to surface, Dr. Charon said, she had to demonstrate that she was open to listening in a compassionate way. The month she spent reading and reflecting on great literature helped her do that.

“Narrative medicine harnesses knowledge from the humanities and the arts and puts that in the service of health care,” said Dr. Charon, whose doctorate degree is in English literature. “It recognizes that as internists we're not just trying to cure people, we're trying to make sure they are not all alone in their illness.”

The start of the field

This experience, among others, led Dr. Charon to gather clinical and humanities colleagues from Columbia to establish a formal field of narrative medicine. With funding from the National Endowment for the Humanities, this group conceptualized the principles and methods of the new field, with help and inspiration from other scholars and practitioners of medical humanities and literature and medicine, Dr. Charon said. (Their textbook, “Principles and Practice of Narrative Medicine, was published by Oxford University Press in 2017.)

In 2009, Dr. Charon and her colleagues inaugurated a graduate program in narrative medicine at Columbia. The 38-credit master of science program provides training in the conceptual foundations of narrative medicine, its clinical ramifications, and the skills of pedagogy and activism necessary to enrich medicine with narrative knowledge and methods, Dr. Charon said. She noted that by late 2021 or early 2022, the program will be available entirely online. In 2017, Columbia also began offering a certificate of professional achievement in narrative medicine.

“The faculty has been amazed at the breadth of persons who become their graduate students,” Dr. Charon said. These include recent college graduates on their way to nursing, social work, and medical or veterinary schools, mid-career health professionals, and writers, artists, musicians, and actors, she noted. “We learn so much from each cohort of students, so that the field itself is ever-generating, ever deepened by our expanding circle of students and colleagues.”

New program launches

From 2009 until this year, Columbia offered the only official master of science program in narrative medicine. This fall marks the entrance of a second master's level program at the University of Southern California's (USC) Keck School of Medicine in Los Angeles. USC's program was developed in close collaboration with the faculty and founders of the Columbia program, who are members of its board of directors, Dr. Charon said. Together, the two groups launched “Narrative Medicine West,” an outreach from Columbia to the West Coast, which currently includes partnerships with USC and with the Kaiser Permanente Bernard J. Tyson School of Medicine in Los Angeles, she noted.

The USC program allows students to complete a master's degree in one year of full-time study, or two or more years if enrolled part-time. Close reading, reflection, and applied writing skills are key components of the curriculum. Courses also explore how narrative understanding can help people grapple with social issues such as poverty, racial tensions, and violence.

For example, one course examines society's response to COVID-19 using the historical example of responses to HIV/AIDS. The course explores social determinants of health and structural violence that cause some people to be at greater risk for illness and premature death than others, asking clinicians to consider questions like “What constitutes good care?” and “How can we better deliver care throughout the world?”

USC's program grew out of the medical school's Humanities, Ethics, Art and Law (HEAL) four-year integrated curriculum, said Pamela Schaff, MD, PhD, director of HEAL and director of the narrative medicine program, who also earned her doctorate in English literature and creative writing.

“Narrative medicine is foundational to what we do in HEAL, but it's a distinct field of study,” said Dr. Schaff, who considers Dr. Charon a mentor. “It's not the practice of medicine itself, but a lens or frame for the work we do in medicine.”

USC set a maximum of 10 students for its inaugural class and has plans to eventually expand to two cohorts of 15 students each, said Dr. Schaff. USC's program will be online-only due to concerns around COVID-19. Starting a new program in that climate was challenging, Dr. Schaff conceded, but the pandemic also underscores its importance.

“COVID is highlighting the huge inequities in health care based on race and ethnicity at the same time that our country is reckoning with racism,” she said. “What better time to train future health professionals in ways of talking about these urgent problems with patients and colleagues?”

In addition to practicing clinicians, the program is open to professionals and students whose work involves or intersects with health care, including social workers, psychotherapists, journalists, filmmakers, academics, and nonprofit leaders.

A unique feature of USC's curriculum is its partnership with Special Service for Groups, a nonprofit organization representing more than 20 community outreach programs, said Dr. Schaff.

“One of our central goals is addressing social determinants of health,” she said. “These partnerships will allow our students to do practicum teaching in the community and to learn from other professionals committed to social service needs.”

Related programs

While there are only two master's programs in narrative medicine in the U.S., other institutions offer related coursework and extracurricular activities.

The University of California, San Francisco (UCSF), recently converted its history and anthropology department to a department of medical humanities with a broader mandate. This restructuring will allow more formal incorporation of narrative medicine into the school, said narrative program director Louise Aronson, MD, MFA, a professor of medicine, geriatrician, and writer.

“When we think about racial inequalities or other social justice issues, tackling them just with statistics—without stories and the ability for people to reflect—didn't do the job,” said Dr. Aronson. “In this program, our students are asked to do reflective learning and writing as they transition into clinical roles during their first year.”

Learning narrative techniques can help physicians deal with stressful events, such as intensive care experiences or other difficult patient encounters, she said.

“Literature can put you inside the mind and experience of another in a way that is much harder to access in everyday life,” she said. “Stories light up different areas of the brain compared with numbers and statistics. They help us connect emotion to intellect, which is important when trying to relate to others with different experiences and backgrounds.”

For example, many people have rediscovered books that deal with racism amid protests across the country and the emergence of the Black Lives Matter movement. “These books help us relate to what's going on in society and to connect science to the unique human beings we are caring for,” said Dr. Aronson.

While reading and reflection are important elements of UCSF's program, there is also a major emphasis on writing and public communication, she said. For example, class discussions and assignments often revolve around published perspectives or opinion pieces in medical journals, newspapers, or video/audio storytelling platforms.

Philadelphia-based Temple University's Lewis Katz School of Medicine offers a narrative medicine program that features courses and activities woven throughout the four-year curriculum. Led by a three-member faculty team including a general internist, an emergency medicine physician, and a professional journalist, the program emphasizes storytelling partly through chronicling the world outside its doors in North Philadelphia.

For example, the program sponsors a podcast, “Narratives of North Broad,” hosted by a medical student and the program's director, journalist Michael Vitez, that features stories from clinicians working in various areas of Temple Health. It also holds an annual “story slam” where participants take the stage to share deeply personal accounts of pivotal moments such as discoveries, joys, and heartbreaks during their lives in medicine.

“Showcasing these stories has helped create a sense of community and support among clinicians and the patients we serve,” said Douglas R. Reifler, MD, FACP, Temple's associate dean for student affairs and medical humanities, who leads the narrative medicine program along with Mr. Vitez and Naomi Rosenberg, MD. “The act of sharing stories helps solidify the meaning of experiences that otherwise might fade into the background.”

Narrative's role

Narrative medicine helps clinicians acquire close listening skills that are necessary to providing effective, patient-centered care, said Dr. Aronson. It teaches physicians to think more broadly about what may underlie a patient's persistent health problems.

“Often when a clinician and patient can't agree on something or a patient isn't doing something a clinician thinks is right, we call them ‘noncompliant’ instead of considering why the person might be acting that way,” said Dr. Aronson. “Narrative medicine gives us the tools to reach these patients, to really understand their experience and why something isn't working for them.”

Simply giving patients space to talk and acknowledging their story often leads to important insights, she said. According to a frequently quoted study published in the July 2, 2018, Journal of General Internal Medicine, physicians interrupt patients after a median of only 11 seconds.

“Start by asking a patient to tell you what's going on, then just listen and wait for an answer. The transition is like white space on a page, signaling that you're starting a new chapter with the patient as narrator,” said Dr. Aronson. “When what you're doing isn't working, it's time to pull in a different tool, and a narrative approach is one of the many tools at our disposal.”

Physicians often worry that taking such an approach will encourage long discussions and questions, said Dr. Charon. However, that rarely occurs in practice.

“I've learned to start a patient relationship by saying, ‘Please tell me what you think I should know about your situation,’ and let them decide what to divulge,” said Dr. Charon. “I've done this countless times, and no one has ever gone on for more than five minutes. At the same time I find out about things that may explain why they aren't doing well, like they've been cutting pills in half because they can't afford them.”

Remember, the goal is to uncover underlying problems, not necessarily solve them, she added. Primary care offices should create a network of community resources and referrals that can assist patients with issues such as domestic violence, child support, transportation, or complex mental health conditions.

Some physicians express fear of emotional burnout if they get too caught up in their patients' lives, said Dr. Charon. However, that can also be the most rewarding part of being in medicine.

“Physicians often tell me that they aren't sure they want to hear about all the suffering because it can be overwhelming,” she said. “I tell them that I probably cry more and attend more funerals than many, but it also gives me joy to be there for someone else.”