Hear my story, help me heal

Several weeks ago, I posted about a new graduate program in Narrative Medicine at Columbia University College of Physicians and Surgeons. I'm delighted and honoured to share with you an interview with Dr. Rita Charon (above), who founded the program and is a professor of Clinical Medicine. Dr. Charon is a general internist with a primary-care practice at New York-Presbyterian Hospital. She took a Ph.D. in English when she realized how central storytelling is to the work of health-care professionals, patients and families. She directs the narrative medicine curriculum for Columbia's medical school and teaches literature, narrative ethics and life-telling. I was fascinated and moved by the depth of her approach. It underscores the importance of what we do here in sharing the joys and challenges of parenting children with disabilities. And it holds such promise for improving care and relationships between parents and professionals. Thank you Rita for sharing this with us! Louise

BLOOM: What is narrative medicine?

Dr. Rita Charon: It’s a form of practice fortified with knowing what to do with stories. It’s the way a nurse or doctor or social worker or therapist might take care of you if they know that you have something important to tell about your situation and if they know that they have to get good at hearing what you tell.

BLOOM: Was there a time when storytelling was more integral to medicine?

Dr. Rita Charon: I’m not a nostalgic person. I don’t look back to the good old days when everything was better. I believe Hippocrates and Chekhov and Freud understood that the doctor must be very skilled at eliciting and respecting and learning from what the patient said. But the healthcare of that time was nowhere near as powerful as ours is. So I hesitate to say ‘we used to know how to do this and we just forgot.’

BLOOM: Why have we moved away from using stories in medicine?

Dr. Rita Charon: It’s not necessarily a matter of mean-spiritedness. I think as healthcare has become more and more specialized, we’ve dropped many of the skills we used to have in common. I’m not expecting the stomach guy to tell me what to do with my heart, however, I do expect them both to know just as much as doctors used to about how to listen to me; how to interpret what I say; how to recognize the feelings I’m having; how to speak kindly to me; how to give information to me in a way I understand it; how to look out for my family or whoever else is involved in my illness; and how to help me make decisions about technical care or ethical issues. These things should be shared by all doctors, but they’re not part of the itsy-bitsy specialized things that they’re supposed to know as specialists, so they don’t learn them.

BLOOM: How much of a foothold does narrative medicine have in medical practice in North America?

Dr. Rita Charon: The ideas in rough outline are not new. Since the ‘70s there have been more and more traditional schools teaching students something about how to talk to patients, how to do interviews, how to build a relationship and about the psychology of illness.

BLOOM: So how have they done?

Dr. Rita Charon: It’s been abysmally unsuccessful. If your doctor is younger than 50 to 60 he or she should have had this training but look around – what do you see?

BLOOM: Why haven’t we made more progress?

Dr. Rita Charon: Because from fairly early on this effort became very narrow. All the medical schools in the U.S. and most in Canada that I know teach a kind of recipe approach: “Call me by name early in the interview; establish eye contact in the first three minutes; treat me with respect.” Here are 10 little rules and if you follow these rules you’ll pass the test. There’s very little taught to do with true contact with a sick person. Then a group of us trained in humanities – in reading, literature and visual arts – came in and said: “There are better ways to do this. The idea is not to have students memorize a script, but rather to let the students experience the fact that each patient has her own unique story to tell and that your task is to be skilled at hearing that and interpreting it.” In the best of circumstances, when medical students got literature medicine courses they were being taught something about how stories work. But even that got derailed because some of my colleagues started having ‘English classes’ in medical school. The material wasn’t connected to patient experience. When I started calling my group narrative medicine in 2000 I thought that’s what it is! I didn’t want to teach literature in medicine. That sounded far away from my little clinic office on the second floor. If I practise narrative medicine, I’m a doctor. The phrase itself showed me there’s a dimension to medicine that has to do with telling and listening to stories. It’s grounded in clinical medicine.

BLOOM: How can narrative medicine benefit parents of children with disabilities and pediatric rehab professionals?

Dr. Rita Charon: The level of loss for some of the kids you see is so high. If you’re the parent of a child with a severe traumatic brain injury who’s lost the ability to speak or walk or think, you’re undergoing bereavement for the child that used to be. Your population of parents and staff need the kind of loving, insightful nourishment that the telling and listening of stories can give them.

BLOOM: When I think of storytelling, I can’t help thinking of time. Is the time needed an obstacle to implementing narrative medicine?

Dr. Rita Charon: We did a study with staff in the pediatric oncology unit at Columbia because we wanted to answer the question you just asked: How long does it take to get some benefits? We set up a series of hour-long writing workshops. We did it in the hospital and staff could come for an hour at lunch or an hour at 10 p.m. at night. We invited all doctors, nurses, social workers and child-life therapists. They had to commit to coming to five sessions and they had to take our research questionnaire at baseline and at the conclusion. We got 19 people who agreed to do that. What would happen is 12 to 15 of us would sit around a table and one or two of us would go as the writing coach. We’d pass around a short writing of some kind – a paragraph from a short story or a short poem. We’d talk about that for a bit and then give a writing prompt, such as: ‘Describe one of your patients from the point of view of their mother;’ or ‘Think of your sickest patient and imagine the best possible future for him or her.’ We would give them five minutes and they would write. Then everyone who wanted to would read aloud what they wrote. The writing coach would always start with comments on the text itself: “I notice you wrote that almost like a prayer” or “that image you use of the child as a butterfly is very meaningful” or “how interesting you left yourself completely out of that picture. Where are you in that picture?” We did this over a number of months and then we did a repeat questionnaire to see if there was a difference.

BLOOM: What did you measure?

Dr. Rita Charon: We measured their levels of experience of stress and what they felt the stress came from. For example, was the stress from the sadness of dying children, the incompetence of colleagues, or the absence of resources? We also used a questionnaire that measures how a person tries to see from other points of view. What we found was there was a statistically significant difference in their ability to see other perspectives after the workshops, which was extraordinary. Some of these people just came three times but overall seeing from another perspective improved enough to reach significance. The perceived stress, from the start of the study to the end, increased, and that reminded us that these workshops are not band-aids. These are not things that make it all better. You might feel worse, because you’re seeing more clearly what is going on. You’re hearing your colleague nurse weep about this young child with a big facial tumor and the mother can no longer recognize her. There’s a lot of weeping in these sessions. One interesting thing was that at the beginning of the study, the doctors and nurses were very different in terms of what they said caused their stress. But by the end, they were very similar. The writing didn’t relieve stress, but it did help the colleagues on the team to get nearer to one another in what they saw as stressful. These methods turn out to be very powerful at team building. In health-care settings there are lots of different professionals and, as you know, they don’t always get along well. When you do writing with them it’s almost like magic because it gets underneath the things that separate them. The doctors aren’t fussing with the chemo and the nurses aren’t fussing with the IV. They’re together looking at the suffering of the patient. When we asked them in a focus group at the end, “What did you think?” they said “We learned things about people we’d been working with for 10 years that we didn’t know. The writing was hard and at the beginning I wanted to tell the story, rather than writing it down. But I learned how important the writing is.”

BLOOM: Why is writing different from telling?

Dr. Rita Charon: It makes it visible. If you tell a story, you tell it, but it disappears – unless you audiotape and transcribe it and then it has words. When we write we give form to what we know. For example, when you write a sentence you have to choose what tense to use in the verb, but you don’t say: “Gee, I want to describe that young kid with the facial tumor, will I do it in the past tense?” It comes to you in a way, in the same way that metaphors and images come to you. My social worker didn’t ‘decide’ she was going to describe her breast-cancer patient as a crocus in early spring, but that’s what she ended up using. When you write it down you capture those deep, otherwise inaccessible ways of experiencing a certain thing. When someone reads aloud what they’ve written I can see not only the plot – the content – but by looking at the form I can see a great deal about where they put themselves in relation to the person they’re writing about. Someone might write in a peculiar tense: “I might have wondered if…” and only then do they understand how deep is their uncertainty, or how afraid they are about what’s to come. We’re starting an archive for medical students so the students can look back at what they’ve written at the end of three or four years and say: “I’ve been writing about death all the way along. But back when I was a first-year student, I thought everything could be cured. Look at this!”

BLOOM: Do you work with professionals and patients together or separately?

Dr. Rita Charon: In the beginning we did it separately. What went on in both of the groups was very moving. The doctors would read aloud to other doctors or nurses of their love and attachment to a patient, their sense of mourning and grief when things went badly, and their amazing joy when things went a little better. In the patient group, patients wrote about the absolute indignity of a bone-marrow transplant or how enraged they were that Medicare wasn’t going to pay for their experimental leukemia drug. It was my colleague who said: “Wouldn’t it be better if we had them together? If anyone should hear about what it’s like to go through a bone-marrow, it’s the doctors. And if anyone should hear the love and attachment doctors have for their patients, it should be the patients. So we put them together (although we don’t put patients with their own doctors).

BLOOM: I’m wondering if narrative medicine could be particularly relevant to pediatric rehab because of the stigma that surrounds disability in our culture. There may be a push to “treat” or “cure” the child with a disability when the child, who’s had the disability since birth, simply wants to be accepted.

Dr. Rita Charon: I think you’re onto something very important. It’s one thing if someone has tuberculosis and they take medicine and get better. A disability is not something that’s going to go away. It’s not like you have to just hurry up and take your pills and wait till this goes away. Your self is a self with this set of conditions. And the writing is a means to discover what that self is. I’ve been writing lately in my own work that the body is the home of the patient. Our body is where we live. Our body is the room we live in. It’s not this vehicle that carries us around during the day. Nor is it a prison. It’s our dwelling place. If I’m the doctor and looking into your ears I have to remember I’m looking into your home. I have to ask permission to come in. And I have to follow the rules of your home.

BLOOM: That’s very interesting because when I think of the body being a dwelling place, I think of something very sacred. And yet in our culture a child with a disability may be seen as being damaged or somehow “less than” others.

Dr. Rita Charon: If a child has a home that’s challenging – maybe it’s hard to get up the front steps – the task becomes not just ‘how am I going to get through the treatment?’ but ‘what is this life now?’ – with the benefits and added understanding of the human condition that I have by virtue of my blindness or deafness or loss of limb.

BLOOM: I imagine the best source of stories for professionals is direct ones from patients and families. But do you also recommend professionals seek out consumer stories more broadly – for example, from a blog?

Dr. Rita Charon: The equivalent of the National Institutes of Health in Italy has created an amazing blogging online community for parents of kids with rare diseases. The parents meet online and disseminate what’s known about these conditions and they’re teaching the pediatricians what it’s all about. I attended a conference last year in Rome where I was the keynote speaker. There were 20 to 30 posters by nurses, doctors and therapists about ways in which ill children or parents they work with had done this writing or video or art. We have a pediatrician on our faculty at Columbia who teaches a course on illness narratives and one on disability narratives. She has her students doing searches all over the Internet: there’s lots of NPR StoryCorps and blogging and YouTube and performance art related to children with illness and disabilities.

Dr. Charon's Narrative Medicine: Honoring the Stories of Illness was published in 2006.