Is There a Role for Literature in "Evidence-Based" Medicine?

A recent article cast a long shadow over the highly touted concept of "evidenced-based" medicine, when a professor of ethics delineated multiple transgressions in research in the University of Minnesota's department of psychiatry. In another example, a colleague who questioned the way the data has been manipulated in favor of the popular "Triple P" parenting program, upon publishing a large study that did not support these findings, experienced professional repercussions. Complex relationships between the academic world and the pharmaceutical industry are well recognized. 

Certainly there exists a wealth of high-quality research that is not subject to this kind of corruption, and has an important role to play. But a hefty dose of caution is called for. Where else might we look for evidence to guide our practice of medicine? 

In my behavioral pediatrics practice, when we have time, we inevitably find that behind every "behavior problem" there is a story that makes sense of, or gives meaning to, the problem. In my forthcoming book (Da Capo, Spring 2016) about the need to protect space and time for listening in order to promote growth, healing and resilience, I offer these stories as a form of evidence. 

Literature, another form of storytelling, can offer a kind of evidence. In my book, I refer to one of most famous quotes from To Kill A Mockingbird, when Atticus tell his daughter Scout, "You never really understand a person until you consider things from his point of view, until you climb in his skin and walk around in it."  I now understand this as a description of an essential of human characteristic, namely the ability to reflect on the meaning of another person's behavior.  The enduring power of Harper Lee's book speaks to the significance of listening, of taking time to put ourselves in another person's skin.

In a section of my book titled “Listening for Loss,” I expanding upon the way loss, as in the case of infertility, pregnancy loss, loss of a child, and even loss in a previous generation, particularly when it has been unacknowledged and unmourned, can exert significant effects on subsequent relationships. I describe how the specter of unbearable loss is an inevitable, if usually unspoken, part of becoming a parent.

I recently discovered a beautiful, if exquisitely painful, expression of this idea in Hanya Yanagihara’s novel, A Little Life.

You have never known fear until you have a child, and maybe that is what tricks us into thinking it is more magnificent, because the fear itself is more magnificent. Every day, your first thought is not “I love him" but “How is he?” The world, overnight, rearranges itself into an obstacle course of terrors. I would hold him in my arms and wait to cross the street and would think how absurd it was that my child, that any child, could expect to survive this life. It seemed as improbable as the survival of one of those late-spring butterflies-you know, those little white ones-I sometimes saw wobbling through the air, always just millimeters away from smacking itself against a windshield.

I suspect this passage will resonate with many, if not most parents, to varying degrees, in large part according to their own life experience with loss. For me this is evidence that loss is part of parenting, and when things go wrong, when children have "problem behavior" we must protect space and time to listen for loss.

One young woman for many years had been treated for ADHD for her distracted and impulsive behavior. Only when she experienced a significant decline in his mental health did the story come to light that she had a brother who was stillborn about a year before her birth. Her mother had suffered prolonged severe depression in the face of this loss, which was never acknowledged or spoken about.

Perhaps we need a healthy combination of all three. High quality research, together with stories, both from our patients and from literature,  can help guide us to "best practice" of medicine.