By Annie Robinson
Dr. Rita Charon, founder of Narrative Medicine, cares deeply about how patients’ stories are told. She believes there are two ways healthcare providers can tell the stories of their patients: with data derived from test results and quantifiable statistics, or with deep understanding of that patient’s experience, derived from generous listening.
Rita observes: “I’m sure many patients have the experience of that first kind of storytelling: ‘They don’t care who I am, they just care what my A1C is.’ But then in the very same place, there’s this other kind, where (a healthcare provider) is not only able to but is rewarded for really coming to understand how to listen to the deeply personal, affective, emotional aspects of not just living, being sick, and of dying.”
But how can providers incorporate this second kind of storytelling into their daily medical practices? Ronald Schleifer and Jerry B. Vannatta, co-authors of The Chief Concern of Medicine: The Integration of the Medical Humanities and Narrative Knowledge into Medical Practices, offer accessible suggestions for clinicians who want to prioritize their patient’s story in their caregiving.
Changes in how providers offer and patients receive care can start with simple but significant technical aspects of storytelling in healthcare: how trainees are taught to write. Usually, hospital notes begin with a patient’s “Chief Complaint”: “My asthma is back” or “I have chest pain” or “I fell and hurt my back.” Schleifer and Vannatta recommend in their book that in addition to a “Chief Complaint”, providers also ask for their patient’s “Chief Concern” - which is markedly different.
This year, for the first time, Rita asked the four medical students she mentored to do just that, and was pleased to see that they took the task of registering a chief concern very seriously. Even at this quite technical level, it is clear “how much it matters how these young kids - 2nd year medical students - are learning how to tell stories.”
The contrasts evident between the complaint and the concern in the examples Rita’s students recorded struck me as nothing short of poetic:
Chief complaint: “Belly pain.”
Chief concern: “I hope my cancer’s not back.”
Chief complaint: “Relapse of pancreatic cancer.”
Chief concern: “Is it now that I’m going to die?
Chief complaint: “Shortness of breath.”
Chief concern: “Suffocation.”
Chief complaint: “Shortness of breath.”
Chief concern: “I really don’t want to be in the hospital again.”
Chief complaint: “Transfer from the coronary care unit.”
Chief concern: “I don’t understand what has happened to me.”
Chief complaint: “I was not making any sense and was confused.”
Chief concern: “I want to take care of my grandchildren.”
It deeply impresses me how easy yet meaningful it is to inquire about a patient’s chief concern. It opens up the possibility of a different degree of trust between patient and provider. But just what should students do when they hear their patient’s chief concern?
“Tune in!” Rita declared. “Notice the lived experiences and implications of an illness serious enough to get put in the hospital. And because we (ask about the chief concern) right up at the front, (providers) are able - maybe - to pay attention to the deep existential fears.”
Rita feels real optimism about this technique: “It’s not like the doctors don’t want to do this, it’s just that they’ve never been asked to...” or shown how, until now, through narrative medicine training.
Narrative medicine cultivates the development of foresight, the ability to tune in and pay attention. As evident in Rita’s stories about generous listening and asking patients about their chief concern, it’s sometimes the seemingly small gestures that can make all the difference in how clinicians hear, and care, and practice being with.
But it’s important to remember that caring for patients’ stories isn’t easy. Rita acknowledged the challenge in what she asks her medical students to do: “It’s not just: ‘Oh yeah, don’t forget, get the patient’s story…’” It’s about more than just “getting the story”. It’s about “rolling up your sleeves, and getting yourself in a position of confronting the situation’ the patient lives.” Even Rita admits: “There are a lot of things I learn that I wish I didn’t know.”
I imagine how overwhelmed caregivers must feel when confronting the unsanitized, scary, disheartening reality their patients live. But increasingly, providers are discovering that to bear witness to a patient’s whole story, they can better understand and thereby meet their patient’s needs.
Rita says, when it comes down to it, “You don’t need somebody who’s going to put their hands in front of their face and say ‘Don’t tell me about that...’ You don’t need that. You need someone who will appreciate the magnitude of what you’re talking about. And who can then maybe do something on your behalf.”
We all need our magnitudes to be acknowledged and honored, because we are not only conglomerations of numerical data, we are people with complicated, unique, and profound stories.
More about Rita:
Rita Charon, MD, PhD, is Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She also has a primary care practice at Presbyterian Hospital.
TEDxAtlanta Talk: https://www.youtube.com/watch?v=24kHX2HtU3o
More about Annie Robinson:
I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.
I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.
I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at firstname.lastname@example.org.