Narrative Medicine

[mp3-jplayer tracks="Narrative Medicine@"] Story Collider reporter Steven Berkowitz discussed the concept of narrative medicine -- the idea that storytelling can empower patients and make medical care more effective -- with psychologist and Academy Award-nominated documentary filmmaker Dr. Murray Nossel and psychiatrist Dr. Paul Browde, who teach in Columbia University's Narrative Medicine program. Together Murray and Paul perform in their live, unscripted show Two Men Talking and founded Narativ, a company that works with people to tell their stories in group circumstances. Tune in to the audio above or read the transcript below. (Audio editing by Luke Davin.)

So can one of you please give me a basic definition of what narrative medicine is?

MURRAY: I would say that narrative medicine is a new discipline in which doctors are being trained in narrative competency as a way of better serving their patients.

PAUL: People feel fragmented in their interactions with health care providers. So what narrative medicine does is it starts to bring together all the disparate pieces, what make up a patient or a person, so that they start to see a whole.

There was something that doctors in those days in South Africa just had. It was called bedside manner, the art of connecting to the person that you are treating.

MURRAY: You know, I remember from my childhood, the doctor who arrived at my house, when I was sick as a child, with a big black bag and treated me. And there was something that doctors in those days in South Africa just had. It was called bedside manner, the art of connecting to the person that you are treating. It's not simply a scientific exchange or an exchange of expert knowledge. Something is happening between the doctor and the patient that's part of the healing process. And narrative medicine is resurrecting that art and actually codifying it as a set of practices that doctors can now learn and practice.

You both teach at Columbia University's program of narrative medicine. Can you tell me about the program?

PAUL: It's a master's program in the School of Continuing Education, and it was created by Dr. Rita Charon, and it's now in its third year. And what it aims to do is to teach people narrative competency. So a wide range of people have a wide variety of classes, ranging from straight literature classes, philosophy classes. We teach a class called co-constructing narratives, in which we work with a group of people first to tell their own story and then to collaborate to co-tell a story, as we do in Two Men Talking – which is how we were asked to teach it.

I was going to ask how you got involved in the program.

MURRAY: The Department of Narrative Medicine essentially came to see a performance of Two Men Talking. And essentially they approached us right afterwards and said, “You are practicing exactly what we are teaching. We want you to start teaching in the newly formed MSC program. And they really allowed us to create a course that would transmit what we know, through the doing of Two Men Talking and a variety of other practices, to students.

Could you tell me what Two Men Talking is?

PAUL: Two Men Talking is the performance of the friendship that Murray and I have had since we were twelve years old. It's an improvised storytelling experience that is always new. So we create it in the moment every time we perform it. And it's the story of how we met, which is that in 1974 in Johannesburg, South Africa, a teacher gave a class of twelve-year-old students an exercise on the first day of school, and Murray and I were partners in that exercise. And I told him a story, and then I said to him, “Tell me a story.”

MURRAY: And I said to Paul, “I don't have a story.”

PAUL: And I tried to encourage him.

MURRAY: And I said, “Really, I just don't have a story.” And at the time, I just couldn't tell stories out aloud. I had lots of stories in my head, but I couldn't speak them out loud because I was very shy and was very much teased at school for being a faggy sissy. That's what I was really called. But Paul was never one of the boys who would bully me or tease me for being a fag. So it was most surprising when he humiliated me in front of the whole class, for being gay essentially.

PAUL: And that was really the end of the friendship at that point. So there'd been three or four years and then we never saw each other again until we met, coincidentally, in New York City over twenty years later. And when we re-met, the first thing I did was apologize to Murray for what I'd said to him when we were sixteen – for humiliating him in front of the class. And we became friends and started recapturing our childhood and the friendship that we never had through the telling of stories.

Now Murray, you're a documentary filmmaker. Is that how you would describe yourself?

MURRAY: One of the things I do is make documentary films. That's not all that I do.

And Paul, you're a psychiatrist.

PAUL: I am.

So there's an inherent co-construction of a narrative part of your regular practice. Are there doctors, like internists, who teach at the program? Or is it mostly people who have other perspectives?

MURRAY: Rita Charon is a very renowned physician. She also has a PhD in English literature. So this is the person who actually founded narrative medicine. So she brings together those two domains very forcibly.

PAUL: Yeah, I would agree that it's not just people who are psychiatrists or in mental health, it's medical people.

But as well as people from other disciplines. You were talking about from the philosophy department, from the English department.

MURRAY: Yes, and our students in the co-constructing course have come from a wide variety of disciplines. We've had journalists, we've had architects, we've had lawyers, emergency room physicians, gynecologists, psychiatrists, pediatricians, nurses. So many different practitioners have found themselves attracted to the field of narrative medicine because it taps into something that they know from practice, but which hadn't yet been codified.

PAUL: Yeah, I think what's really fascinating about it is that it's a very new field. In itself, narrative medicine is a co-constructed narrative. It's bringing together the world of narrative and the world of medicine and seeing how they talk to one another. And so everything that's happened so far is still the beginning. And it's possible in ten, twenty years' time that this will be a word that has a meaning that people all understand. But for the moment, it's really very new. So it's an invention, and that's what makes it so exciting.

What narrative medicine recognizes is that each person is an expert in the matter of their own lives.

MURRAY: Part of what's really informed what we do is the recognition that every person has a story. There's some kind of power relationship that exists in the expert relationship. The expert has all the knowledge, and that's the doctor or physician, and the patient has no knowledge. What narrative medicine recognizes is that each person is an expert in the matter of their own lives, and that when the patient walks into the doctor's office, the patient knows a great deal and is, in fact, the expert about his or her own life. And narrative medicine is about recognizing that the patient and the doctor are both experts and what they are doing is they are co-creating, or co-exploring.

PAUL: I think the AIDS epidemic was the first time that patients became empowered with knowledge and they knew more than the doctors knew. Because, in fact, the establishment was doing so little at the beginning of the AIDS epidemic, if the patients hadn't empowered themselves and become educated, nothing would have happened. So people started really studying up. They were up on all the newest studies before doctors were. And they advocated for themselves. And doctors had to listen to patients.

MURRAY: That was my personal experience in 1994 when I went to work in an AIDS program. Patients were constantly challenging the doctors. Everything that the doctors said, the patient would say, “How do you know that? Have you read the New England Journal of Medicine? Have you seen this latest study?” It was an amazingly democratizing force.

The way you were just describing the patients going in, that seems to be an area of diagnosis where the patient has an issue, a problem, a disease and they are taken to be, by narrative medicine, the most knowledgeable about their own condition. And you encourage, if I understand correctly, the doctors to work with them to understand their story.

PAUL: Yeah.

So how does that help in coming up with the appropriate diagnosis?

PAUL: There are multiple diagnoses that people live with. An example that I have of that is a patient who, according to the cancer specialists, is doing extremely well. So the chemotherapy that she takes has caused the cancer to go into remission, and she's doing fine. The only thing is that there's another diagnosis that the cancer specialist is missing, which is that every third week when she takes the chemotherapy she feels completely wiped out for at least a week, very nauseous and deeply unhappy. And she has been told that she has to take this chemotherapy for the rest of her life.

As a result of that particular story being missed, there really is a risk of eventually of her choosing not to take the chemotherapy unless something is done to make sure that she feels better every third week. The diagnosis is also her life and how her life feels to her. And in that domain, she's clearly the expert.

MURRAY: From a purely medical standpoint, I have a story about being a patient. And that is, I went to see a doctor, a new doctor, and I had to wait an incredibly long time to see him. I waited in a waiting room for four hours. By the time I got to see him, I was ready to wring his neck. My first session with him took one and a half hours, and he asked me questions about my entire life and he listened very attentively to everything I had to say about my life.

So one of the things he said to me was, “You grew up in South Africa, right?”

And I said, “Yes.” I mean, this is a Park Avenue doctor in New York City.

“When last did you go for a dermatological check-up?” he said. “Because you must have had a lot of sun exposure as a child.”

I said, “Well, I've never been for a dermatological check-up since I've been in the States.”

He says, “I'm making an appointment for you to go see a dermatologist in this building right now.” And off I went to see the dermatologist who found on my leg a malignant melanoma.

And if I had not been to that doctor at that particular point in time, and if he hadn't been savvy enough to put together the fact that I came from South Africa and would have had sun exposure as a child, I wouldn't be sitting here right now. So there is something about asking the right question. That doctor was sufficiently connected to me and put South Africa together with the sun exposure. And that facilitated a diagnosis which saved my life.

The thing about that particular story is you say he took an hour and a half with you. We get ten or fifteen minutes with our doctor if we're lucky and she's running tests. How in the current system of checklists and insurance payments and ticking off all of the right boxes is there space for this kind of, in a sense, slower medicine?

MURRAY: It has become a luxury. I think that, even in the current system, the idea that the listening shapes the telling is very important. So even if a doctor spends the first three minutes really connecting, I think there's much more chance that the patient will reveal the information that needs to be revealed. It is very difficult to go into a doctor who's viewing you as a checklist and is sitting and looking at their computer screen and tell them about issues that you know are bothering you.

So what you're saying is that these checklists sort of close down inquiry rather than encourage it?

MURRAY: Definitely. And I think it's why so many people choose to seek alternative practitioners, because they are not so wedded to a checklist – there's fewer prescriptions. And so people can really feel heard.

We spoke about how narrative is used in a diagnostic setting. Can you also use it, or how is it used, in a therapeutic setting?

PAUL: I mean, first of all, people being able to make a coherent narrative of their own lives is inherently healing. It helps people. So people who have dealt with trauma, one of the things that they struggle with is being able to put together all these pieces of their past. Sitting with people and being able to create a narrative gives their life a sense of coherence. Whereas before, they felt all over the place and perhaps even confused by life, suddenly life starts to have a more holistic feeling to it.

And you know, diagnoses themselves are stories. So if you look at a diagnosis and a prognosis, the prognosis you could think of as a story. And one of the things that people deal with a lot is a feeling like they have no right to challenge a prognosis when doctors really don't know how long people are going to live. So it's very important for people to be able to create their own future narrative, which then also informs how they experience life in the present. And I think doctors' understanding the stories of those patients can really help them with that.