Can narrative medicine inform quality of care?

Can narrative medicine inform quality of care? As characterized by Dr. Rita Charon in her JAMA article almost 15 years ago, narrative medicine is “the ability to acknowledge, absorb, interpret, and act on the stories and plights of others.” It is the recognition that scientific knowledge alone is not enough — not enough for our patients, for ourselves, and for society. It stresses the importance of not only hearing what our patients go through, but also to interpret and to respond to their experiences.

Narratives have found a home in journals such as JAMA (A Piece of My Mind), the New England Journal of Medicine (Perspectives), Annals of Internal Medicine (On Being A Doctor), the Journal of Clinical Oncology (Art of Oncology), and on online communities, such as ASCO Connection. Beyond exercises in creative writing, I think these opportunities serve to emphasize that medicine is and will always be an art, and that is as important as our quest for evidence. After all, it is the human element of medicine that cannot be converted into an algorithm or modeled with even the most sophisticated computer program.

My blogs and tweets (which are really microblogs — stories told in 140 characters) reflect what I’ve read, impressions I have had, and thoughts I want to share.

Both are exercises in writing, and though I never thought of myself as a writer (still don’t in fact), I find it has given me a way to share my own experiences in medicine and the rich interactions I have had with colleagues. It has allowed me to contribute to a larger sense of community. These are not opinion pieces, but rather reflect my choice to practice narrative medicine.

I will admit that I write with hope that one who reads my words may take something away from it; that it will have even a small impact. However, looking back, perhaps the one changed the most is not a reader–it is me. Writing has informed how I interact with my kids and my friends, and how I practice oncology. It has helped me to realize how precious time is — to actually look up and appreciate the sun shining; to stop and smell the roses. In so doing, I am more cognizant of the words I use, the approach to take when discussing evidence. In short, it has impacted on my lived experience of medicine as an art.

I wonder if narrative medicine may serve an even more important goal though — is it possible that our narratives could inform quality of care? Maybe by sharing our stories and giving a voice to experiences, we can inform the goals and preferences of our patients, and allow their voices to be considered in the weight of evidence and the analyses on cost effectiveness. By reminding us to pay attention to what our patients tell us, could narrative medicine help guide the weighty issues that we are dealing with as oncologists, clinicians, patients, advocates, and as a society?

For example, the use of narratives can lend voice to the urgency to participate in clinical trials. One story I shared in ASCO Connection was of two women who participated in a randomized trial — one who survived and one who did not. The message was that trials are important, told in the sharing of experiences of two trailblazers. I cannot tell you precisely how many times it was viewed, but it did stimulate some really good discussions, which played out online on KevinMD.com and on Twitter. Perhaps if each clinician shared a story, we could increase the rates of trial participation in the future.

I certainly do not think all of us are meant to be writers, nor do I suggest that it should be a mandatory practice for all clinicians. But I do think each of us has something to share. Perhaps by doing so, one can learn a little bit more about him or herself in the process. That in and of itself is a worthy goal.

There is one question I am asked, though, that I do find myself coming back to — with each blog I write and each tweet I send: “Who are you writing for”? To this question, the literary critic and writer Cyril Connolly said it best: “Better to write for yourself and have no public, than to write for the public and have no self.”

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

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