Teaching the Rx Narrative: Story as Medicine

oliver sacks

In a week’s time I am teaching a workshop on the role of stories in medicine at Stanford Medicine X. I am excited, and also a little nervous about it. I’ve spoken at several conferences on this theme, but this is the first time I will be teaching a whole workshop on it.  I’d like to share some of my thoughts on this topic with you, and perhaps you could share with me your own thoughts on how stories have shaped your healthcare experience.  I am working on a plan to record (either by video or audio) some patient and healthcare provider voices speaking about storytelling in health to show during my workshop – let me know if you would like to be included in this.

“Medicine begins with storytelling. Patients tells stories to describe illness; Doctors tell stories to understand it.”  Dr Siddhartha Mukherjee

Medicine is at heart at a narrative activity, and its daily practice is filled with stories.  Most important are the stories patients tell their doctors. Medical historian, Stanley Reiser wrote in his his 2009 book, Technological Medicine: The Changing World of Doctors and Patients, “Before stethoscopes, the coin of evaluation was words—the doctor learned about an illness from the patient’s story of the events and sensations marking its passage.”   Doctors take this story and turn it into medical information, returning the story to the patient as a diagnosis.  However, the patient’s story includes many things that are beyond the reach of the health professional’s narrative. Clinical choices are not isolated from all else that happens in people’s lives but are part of an ongoing narrative. Patients are part of a network of relationships and responsibilities. They may have unspoken beliefs, fears, and expectations about what their illness means which will affect the healthcare choices they make. The medical narrative breaks down at the point where the patient story goes unheard.

What happens when the patient narrative doesn’t match the physician’s version?

Conflicting illness stories will hinder treatment because the meaning we give to our illness is significant in terms of managing our illness and contributing to our well-being. Medicine organized around meaning encourages more humanizing care rather than the current standardized care. I have shared the story of my own experience as a young woman diagnosed with breast cancer and how my doctors didn’t think to discuss fertility preservation options with me before I started treatment. Perhaps my doctors assumed what mattered most to me was saving my life– and of course that mattered a great deal to me – but what also mattered was the  story of that life to be saved. If we could have had a discussion about who I was – not just another cancer patient – but a young woman with hopes and dreams of a future with children – maybe we could have made different treatment choices in terms of the toxicity of the chemotherapy or explored fertility preserving options  in the brief window of opportunity that exists before treatment begins. But  my  story went untold. So while I received professionally competent care the legacy of that care left wounds that medicine couldn’t fix.

My plea to physicians is to be  sensitive to  the context of the illness experience; to establish a diagnosis in an individual context, instead of merely in the context of a systematic description of the disease. When stories are missing from healthcare, the result is often confusion, dissonance, a breakdown in communication,  resentment and withdrawal. When we include stories in medicine, we can create understanding, humanity, empathy, meaning, and connection.

So my question is how can we bring medicine back to its storied heart?  As always I’d love to hear your thoughts on this both from a patient and a provider perspective. And do let me know if you would like to be included in my Stanford workshop.