By Bonnie Darves

First posted on LeadDoc on 11/15/2012.  Republished with permission of ACPE.

 

Last year, while Malgorzata Nowaczyk, MD, was taking the history of a patient who was pregnant, she ventured a comment that, under ordinary circumstances, might have produced little response.

“I said something about how the baby was likely to look like her—to have similar facial characteristics,” she recalled. The woman’s face darkened and she became visibly upset. “She looked at me, and said, ‘This is not the way I look normally.’”

Nowaczyk, a private practice physician based in Hamilton, Ontario, remembered her own visceral response. “It was one of those ‘hold the phone’ moments. I knew that something was going on, and that I had to get to the bottom of it. Because it wasn’t what she said, it was how she said it. I sat down, looked at her, and said, ‘Tell me what’s going on.’”

The patient said little initially, but her pained look spoke volumes. She pulled out her smartphone and retrieved a photo of herself taken four months earlier. The differences were dramatic. The patient who sat before Nowaczyk had severe acne and very coarse facial features; the woman in the picture had neither. And the patient’s deep voice, near baritone in quality, was also newly acquired, she reported.

Nowaczyk eventually discovered the child her patient was carrying had an extremely rare genetic condition called Antley-Bixler syndrome, in which the fetus produces excessive amounts of testosterone, which in this case had entered the bloodstream. Infants with the syndrome typically are born with numerous facial and other physical deformities.

The seriousness of the case, sad and distressing enough in itself, was exacerbated by what preceded the diagnosis, Nowaczyk said. The patient had seen other physicians who dismissed her symptoms and concerns. “Either they were too busy to listen, or they weren’t open to what the patient was saying,” Nowaczyk said.

Nowaczyk said she might have missed the diagnosis, too, if it weren’t for her recently acquired skills in narrative medicine. This emerging multidisciplinary field taps the rich traditions of story-telling and reflective writing, as well as attentive listening. Narrative medicine seeks to help clinicians engage more deeply with patients, better understand the illness experience and explore their personal responses to both the joyful moments and painful experiences in their practice lives.

Literary tradition finds new role in medicine

“This comes from a twinning of patient-centered, relationship-centered medical practice and literary theory and narratology. It involves understanding, in disciplined ways, how stories work, and what happens when one person tells one and another person listens,” explains Rita Charon, MD, PhD, an internist and professor of clinical medicine at Columbia University in New York City who coined the term “narrative medicine” and led development of the first graduate program in the field.

“The objective is to bring in this gorgeous knowledge of why human beings tell stories and what it takes to understand one, squarely into the clinic, the hospital, the training program or the meeting of the healthcare team,” she said, “so that we can get the work done with respect, regard, honor and effectiveness.” This confluence of traditions, Charon said, leads to better, more informed patient care and ultimately, more career satisfaction for physicians and other health professionals.

That’s exactly what transpired in Nowaczyk’s case after she participated in Charon’s advanced narrative medicine workshop two years ago. “It has definitely changed way I practice. It’s not that I haven’t always listened to my patients, but I listen differently now—with more of an all-pervasive feeling,” she said. “I hear their stories more fully and I understand my patients better.”

Reflective medical writing, the act of chronicling not only the encounter with the patient but also the clinician’s emotional response to that interaction, is at the core of narrative medicine. The “product” is essentially a work of creative non-fiction, not a case report. And it’s perhaps the key narrative medicine practice that enables physicians to obtain and utilize their patients’ stories.

“We of course know so much more about our patients than we put in the chart. And when we write about patients in this manner, I think that we notice, and honor, things we might have missed before about the patients and about ourselves,” Nowaczyk said. “It builds mutual understanding and, ultimately, trust.”

For clinicians, the practice of sharing their reflective writings with other clinicians—in narrative medicine courses or workshops where participants read their written reflections aloud and listen as others read their writing—not only helps them deal with the difficult emotional and psychological challenges that attend clinical practice. It also promotes collegiality by reducing the divisions, real or perceived, between individuals. That can be extremely beneficial in settings where multidisciplinary patient care teams use narrative medicine as one means of improving their collaboration, Charon said.

Competency’s appeal is broadening

Although the field of narrative medicine is nascent, recognition is growing. The Columbia University master’s of science in narrative medicine, established in 2009, remains one of the few dedicated programs. But many medical schools and universities, in the United States and abroad, have begun offering courses in either narrative medicine competence or the practice of medical reflective writing. And as Charon’s former students and workshop participants leave her programs, they are spreading the word and spurring interest.

As a testament to narrative medicine’s growing popularity, Columbia University’s introductory workshops, which are three-day intensive offerings, are not only selling out but also attracting participants from around the globe, both clinicians and non-clinicians.

“What surprised us was that they don’t just come from the New York region, but from all over the country, and even Canada, Western Europe and South America,” Charon said. “We have been really floored by the hunger, worldwide, for this very simple, yet difficult thing: bringing the understanding of narrative theory and how stories work to bear on the care of the sick.”

One longtime devotee is Margaret Cary, MD, MBA, MPH, an ACPE member as well as an executive coach and writer who consults on physician leadership development. In part because of her own experience in using reflective writing personally and encouraging its use for her clients, Cary began teaching a personal essay and narrative medicine at Georgetown University School of Medicine in Washington, D.C. Her primary focus is on helping students process their experiences as they go through the curriculum rather than interactions with patients.

“The difference with narrative medicine, and the benefit of this kind of writing, is that it’s self-reflective process, and it shows you how you do,” Cary said, “and how you respond emotionally to experiences.” In the case of the medical students, this type of course offers them a safe way to reflect. “Medical school is incredibly abusive, and one of the things my students routinely mention is that they didn’t realize that their fellow students were experiencing similar feelings about that,” she said.

For Nichole Boisvert, a third-year medical student at Georgetown who took Cary’s course and a student member of ACPE, the exposure to narrative medicine is paying off as she moves through her clinical rotations. “It gives me a different way of interacting with patients, and a sense that I am being more present,” she said. “Now, I always go in looking for the story, not just at the medical [issues]. I recognize that the patient’s family and social situation, and perhaps addiction or other factors, all contribute to what’s going on with them from a medical perspective.”

Jennifer Anyaegbunam, a second-year medical student at the University of Virginia School of Medicine, in a sense got a head start on using narrative medicine. She is a graduate of Columbia’s narrative medicine master’s program, which she pursued as a means to bridge her undergraduate experience as a film studies major with her intention to pursue a career in medicine.

“The narrative medicine program allowed me to not just reflect on my feelings but also to face where those feelings were coming from,” Anyaegbunam said. “It has helped me to better understand other people’s personal experiences and to develop more empathy—both of which will help me prepare for clinical practice. The culture of medicine is incredibly competitive and aggressive, and those traits are amplified in medical school, I think. Narrative medicine has given me a way to balance that, because there’s an inherently collaborative aspect to it.”