Arlington Bluebell Walk by Paul Lloyd

At the Digital Storytelling Lab, our mission is to explore future forms and functions of storytelling. Stories, as the foundational building blocks of culture, are innately powerful. Harnessing that power as a tool for healing is one area of speculation within the Lab, an area that has tremendous potential to make transformative change in healthcare.

Lance Weiler, Founding Director of the Columbia University School of the Arts’ Digital Storytelling Lab sat down with Dr. Rita Charon, Professor of Medicine at Columbia University Medical Center and the originator of the field of Narrative Medicine for a discussion on the role of storytelling in providing care that is truly patient-centered.

Lance Weiler: What led you to the medical field? Was it something you always knew you wanted to do. If so, can you share why?

Dr. Rita Charon: So I think I was kind of chosen to be a doctor by my father who was one himself, and who was determined that at least one of his five daughters would follow in his professional footsteps. But this was in the late 60’s and it seemed to me as I was starting college that there were more important things to do than join one of the elite professions. It was ’68 and there was a war to be ending. There were demonstrations to go to. So I eventually got into medicine through the door of activism and through the door of being engaged in the movements, the civil rights movement, the feminists movement, the, you know, “The streets belonged to the people.” movement.

Somehow, starting medical school was delayed for about, I don’t know, eight to ten years as I was involved in activism, teaching in open classrooms and liberated spaces for learning, mostly with children. But along the way, my father’s predilections came back to me, and I thought that medicine might not, in the end, be such a bad way to continue working towards my goals. So I started late, I don’t know what I was…26, 28… something like that when I started medical school and ended up becoming a primary care physician. I chose to train at the Montefiore hospital, which I thought was the most progressive training in social medicine and then started a practice at Columbia in the medicine clinic, taking care of patients in the neighborhood in Washington Heights — which is a very mixed, multiethnic, now mainly Dominican neighborhood, great vitality, great, great engagement among the community. That was my practice up until a couple of years ago. I was there in the clinic working as a doctor taking care of patients — I mean I was taking care of people for 35 years. I recently closed my practice only, because all [of] these other things that Narrative Medicine had led me to do and to really commit myself to, took me away so much from New York that it was… it became kind of unfair for patients to expect me to be their doctor. So that’s what happened.

LW: What are some of the things you learned from having a practice?

RC: My primary responsibility to my patients was to listen to what they said and to take in whatever account they came to the doctor’s office to give. And I understood that, you know, Harvard Medical School had not taught me how to do that. They had taught me quite the opposite, a reductionist, positivist, disease centered model of listening to what patients said, which I was to be very suspicious, you know. “We suspect tuberculosis,” we might say. “We suspect this problem,” so it was a whole other way of using myself as a personal instrument here, to be able to listen in this way. So that’s what sent me to the English Department. I figured they were the ones on campus who knew something about listening to stories, and indeed they were happy to have me come take a course. They said, “Don’t take a course. Take a Masters, which I did. And then they said, “Don’t just take a Masters. Take a PhD,” which I did. And it was great, and it taught me how to be a doctor so that was the beginning of Narrative Medicine.

As soon as I finished the Phd, I gathered colleagues around me who, seventeen years later, are still together as the Program of Narrative Medicine, and they are literary scholars, philosophers, oral historians, psychiatrists, psychoanalysts, pediatricians, novelists, and together we have over these years developed… how can Isay… a rigorous model of theory and practice for how a clinician can hear what a patient tells him or her and, more broadly than that, how each of us were all patients. We’re all eventually going to get sick and die. I had learned so much from my colleagues about questions of embodiment and the fact that we do not have to divide ourselves into mind on one side and body on the other or body on one side and self or personhood on the other, but instead we are all mortals inextricably bound to our bodies, our health, our frailties, our eventual mortality. This is how it is within that element that we don’t become ourselves, but [we] are ourselves. Since we created Narrative Medicine — we actually used the term for the first time in the year 2000 — the ideas, the practice have grown explosively. People come to study with us. We had to start a graduate school. We recently started a certificate program so that people that don’t live in New York City can still study with us. And throughout the world there are growing centers of Narrative Medicine, scholarships. It is not just us anymore who are committed to a radical transformation in healthcare, truly patient-centered care.

LW: Out of the birth of that Narrative Medicine Program, what results have you seen from the program and what have you learned? Has anything surprised you, and, if so, why?

RC: What’s been really fantastically surprising is to see who comes to these practices and ideas. You know, I told you who we started with: literary scholars, philosophers, oral historians and a bunch of physicians. Now those who come either to our degree programs or just our ongoing workshops and conferences, for starters, represent all the clinical disciplines. It is nurses, physical therapists, social workers, pharmacists, veterinarians, osteopaths, counselors and mental health professionals of many kinds, psychoanalysts… a long list… artists, from the visual arts, music, writing of many genres, playwrights, mid-career. These are people who come to us. They say, “I’ve been practicing narrative medicine for years. I just didn’t know there was a name for it,” and they come. Patients come. Families come, so it feels like we’ve opened something. A metaphor we often use is, “we’ve created a clearing,” you know, like in the middle of the forest, a clearing that offers some safety, some protection. That’s what it feels like. So one of the real surprises was that this work — and we didn’t know this at the beginning — was really really good for developing health care teams. This narrative work that we were doing, showing people how to listen with great attention and respect. “Being able to listen as a reader” is how i often describe it; where every word counts and you’re donating your own unconditional committed listening to someone else. And so, when we do that in groups, the groups can get beyond what usually divides them. And we do this in clinics with doctors, nurses, social workers, receptionists, nursing assistants, and they are able to really hear one another out without the power hierarchy that usually governs who gets to lead a meeting or who gets to talk.

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Dr. Rita Charon originated the field of narrative medicine.

“I mean they would tell me about the death of their father or the trouble they’re having with their son or the fire they had in their house. I mean, it was anything, and the biggest challenge I had was to convince people that I wanted to listen to whatever they said. One lady said, “You mean you want me to talk?” — Dr. Rita Charon

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LW: For somebody who maybe isn’t familiar with Narrative Medicine, can you summarize the difference between the approach that you have in relation to how medicine has traditionally been practiced?

RC: If a person comes to some healthcare setting, usually it’s because they have some kind of problem that they don’t know what to do about or, alternatively, they are healthy enough, but they want to stay that way. But typically, when somebody comes to a doctor, nurse, or social worker, it’s for a particular problem. And we all have been trained. This is doctors, nurses, therapists, even social workers more and more are trained along a problem-oriented model. You don’t just go to any nurse or therapist or doctor. You’ve already chosen which one you go to. If you have heart problems you go to a cardiologist. If you have alcohol problems you go to an alcohol counselor. You’ve already decided what the problem is before you go. So right from the beginning, mainstream medical models are centered around a disease — either diagnosing it, or treating it, or preventing it. Right? But that’s the model. At least Western Medicine is a disease model. It is disease-centered, disease-specialized. So it is a radical turn to say, “Even if I know a whole lot about cardiology or even if I’m a gynecologist and know a whole lot about reproductive health, let’s start our work by simply listening to what the patient brings into the office.” That’s all. Sounds very benign doesn’t it? But it’s another way.

I’ve done this. This is how I used to run my practice. I would say, “I will be your doctor. I need to know a lot about your body, your health, your life. Tell me what you think I should know about your situation.” That’s how I start. This would be with a new patient, and people would tell me. And it would not be restricted to aches and pains or previous illnesses. I mean they would tell me about the death of their father or the trouble they’re having with their son or the fire they had in their house. I mean, it was anything, and the biggest challenge I had was to convince people that I wanted to listen to whatever they said. One lady said, “You mean you want me to talk?”

So what that means is that the patient is with the clinician from the beginning deciding what the problem is, and the problems don’t have to be restricted to biological problems. And you might say, “That’s fine if you’re somebody’s neighbor, but they’re coming to you to be their doctor.” In my case it’s doctor, and I say, “Unless I know what the patient brings in to the room that seems to need a solution or seems to need attention, if I’m the one choosing the problem to be solved, we may not get very far. We’re not doing what the patient came in for, which is to address a problem.”

LW: Are there important things to consider when bringing patients and clinicians together? When you create these “clearings,” what is important in terms of establishing them? What have you found valuable within those spaces?

RC: So there are long, long experiences on both sides: of the clinicians in the room, in the office, and the patient in the waiting room waiting for his or her turn. And, tragically, those long experiences collude to reproduce what by now feels almost inevitable, which is that the clinician takes charge, and the clinician asks the questions and the patient is expected to answer them. Both sides bring in decades, centuries of suspicion… distrust. There’s liberal amounts of shame and blame and fear on both sides. It’s like the whole thing is stacked against them both.

The patients come in not expecting to be treated with compassion and warmth. Instead, on the whole, they come in armed with their list of questions that they’ve written down so as not to forget any in their precious twelve minutes, which is all they’re allotted. The clinician, on his or her side, is already looking at the wristwatch aware that there’s another three people in the waiting room waiting for what’s going to amount to the same brusk, impersonal, divided attention. So nobody’s getting what they want or need or desire or can benefit from. So you can imagine it takes a lot of work to coincide a clinician who is eager for a new kind of interaction with a patient who is eager for a new kind of interaction. So you see this happening. I think there’s two areas where this is happening. One is in what is loosely called “integrated health care” and the second is in palliative care and hospice care.

LW: So in closing, Rita, is there anything that you would love to see come out of this experiment that we’re doing at Story I/O, or in general within the field?

RC: Well, I think Story I/O is going to give us a chance–and there ought to be millions of those chances going forward–for persons on both sides of this divide, if you will, the patient and clinician, to really not just believe but to see evidence of our sharing of these very deep desires. That nobody on either side is particularly happy or satisfied with how things have turned out. I know the figures on things like physician suicides, and doctors kill themselves at four times the rate — actually the women physicians are even worse than the men at the rate in which they kill themselves. So, it’s not as if the current model is assisting anyone. I could go on if you want to hear my condemnation of the corporatization of health care. And, indeed, there are people who are benefitting from the current state of affairs, but they tend to be the investors in pharmaceutical companies and health insurance companies and things like that. But the current state of affairs is really not benefitting the armies of clinicians and the numbers of patients, so let us prevail. And maybe if we’re left alone in our clearings, just the clinicians and the patients. Forget all the others. Forget the hospital executives and the American Medical Association. If we’re just left in a room together, maybe we can come to some pretty fine ideas of how to make things better for the patients which will in turn lead to fulfillment for that clinician. That’s what I’m hoping for.

About

The Columbia University School of the Arts’ Digital Storytelling Lab (aka Columbia DSL) designs stories for the 21st Century. We build on a diverse range of creative and research practices originating in fields from the arts, humanities and technology. But we never lose sight of the power of a good story. Technology, as a creative partner, has always shaped the ways in which stories are found and told. In the 21st Century, for example, the mass democratization of creative tools — code, data and algorithms — have changed the relationship between creator and audience. The Columbia DSL, therefore, is a place of speculation, of creativity, and of collaboration between students and faculty from across the University. New stories are told here in new and unexpected ways.

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Join Columbia faculty and industry innovators as we explore the current and future landscape of digital storytelling.

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