I often think about what the writer and patient Anatole Broyard said, “Stories are the antibodies against illness.”
It’s hard enough that a diagnosis comes along to threaten our lives—does it also have to threaten our life stories? One of the things I heard many patients talk about was how their diagnosis resulted in what felt like an identity crisis.
Research tells us that the flood of emotions that comes with bad news doesn’t allow for reasoned responses. Yet I’ve known it to be otherwise.
One patient in particular comes to mind. I asked her, as I did all new patients after they met with their doctor before their first scheduled treatment, “Do you have any questions?”
Oftentimes, the response was immediate and universal: “I don’t even know what questions to ask.”
But hers was not.
“She asked, “ What is it you do— that a medical humanist does?”
I explained I was a writer by night and medical humanist by day and documented —in the patient’s own words—what they understood or misunderstood about their diagnosis, prognosis, treatment plan and if there were any questions they wished they had asked. I explained the doctor reviewed my note, which required his or her signature, before it could be filed in their chart. Over the years I witnessed doctors taking a pen from the pocket of their white coat noting, “They never told me that.”
”Why didn’t they ask me if I understood what they were telling me?”
I thought to myself, ‘Why didn’t you say something’ but I knew not to ask. My role was to help patients clarify what was misunderstood or unsaid. The medical humanist note provided a vehicle to help facilitate communication—not answer medical questions and concerns.
What I learned is that in the process of becoming a patient –people want to be good patients and often tell the medical version of their story. They may not share how illness impacts the quality of their lives.
Illness calls for stories but telling doesn’t come easy nor does listening. Without sharing the fuller story about how illness is affecting one’s life, our doctors cannot develop a plan of care that aligns with the needs of the person who is the patient. Thus, patients must help healthcare professionals understand their story, a life that has been interrupted by illness.
“Ah,” she said, “so that’s where you—a writer—comes in.”