“When a doctor tells you ‘You’re sick,’ he’s not just diagnosing you; he is initiating a new chapter in the story of your life…”
How often do we receive e-mails that include the typical short message: “Thought you might be interested in this… ” I find my finger hovering over the link to the Harvard Magazine article. Considering both the subject matter and sender there was no hesitation. Not only was the email from a respected colleague but the announcement of the arts and humanities being incorporated into Harvard Medical School’s curriculum resonated with my interest in humanistic care. The act of clicking on the words “The Art of Healing” provided it’s own gratification.
Dr. Suzanne Koven, a primary care physician is the new program’s “writer in residence. ” Dr. Koven uses literature, as do other prominent medical schools, to help clinicians re-connect to a shared sense of humanity with their patients. These are important programs, especially in the current pressured healthcare climate. We cannot lose sight of the need for training healthcare providers to listen to and communicate with the person who is the patient. “Stories,” Dr. Koven reminds us,” help connect us.”.
As a writer, not a medical professional, I asked myself what would it be like if the patient’s story—in his or her own words—were documented in the medical record for the doctor to read. The concept became a reality in my role as medical humanist in a cancer center practice. Often, after reading my medical humanist’s note, doctors would say, “They never told me that.”
One story I documented immediately comes to mind. In this instance a hospitalist requested “a medical humanist consult.” The patient had been readmitted with severe abdominal pain most likely related to his diagnosis of pancreatic cancer. The hospitalist was interested in learning about the patient’s understanding of his prognosis.
When I arrived the patient told me he had never heard of a medical humanist but from what the hospitalist had said about me, he thought I could be of help. I assured him I would try.
“How do you live knowing you’re going to die?” he asked.
I confessed that for those of us who are not yet ill we could only imagine—to imagine was not to know. What I asked of him was to give me a moment. I remember closing my eyes and—in my mind’s eye—I saw myself turning towards his question and away from it. In the process of going back and forth there was a moment when I faced his question head on. “More fully or with great difficulty,” I heard myself say aloud.
“Are you saying I have a choice?” he asked.
“I am,” I said.
“I like how you think. I never heard of a medical humanist before. Does Blue Cross pay for this?”
What did the hospitalist say after reading the note?
He thanked me for bringing attention to the patient’s readiness to talk about prognosis. Adding, he’d be speaking with the treating oncologist and sharing my note. There were issues surrounding treatment and quality of life considerations that needed to be discussed with the patient and his family.
It has been 10 years since I had that conversation. The medical humanist program also ended in 2005 but we recognized the importance of including the patient’s voice in the medical record. Building upon knowledge gained from the pilot program we designed the Difficult Conversations Toolkit as a guide to help prepare patients to take the initiative in communicating openly and honestly with healthcare providers. Some have questioned whether our Toolkit is “too existential” for patients. We take that as a compliment. Too often patients only report their medical story. Illness, patients reminded me, is an existential crisis as well. Over the past 2 years the use of the toolkit has demonstrated that patients are often ready to talk with their doctors about hard subjects sooner rather than later.
Dr. Arthur Frank, a physician and patient himself wrote, “When a doctor tells you ‘You’re sick,’ he’s not just diagnosing you; he is initiating a new chapter in the story of your life. Illness calls for stories,” he said, “but telling doesn’t come easy –nor does listening.”
What would it be like if doctors would extend an invitation to hear how illness is impacting the lives of their patients and families? And, if patients come prepared to tell them. Together, they could be co-authors of a new chapter informed by the lived experience of illness, not only the medical story.