I recently stumbled upon an old email from a nurse with whom I worked with many years ago at the cancer center in Bennington, VT. At the time she had asked me: “Do patients, really want their doctors/nurses to be human? Or do they want them to do what they were trained to do and fix the problem?
Prognosis is not a term familiar to most people unless used by a doctor to explain the expected course of a medical condition. Even then, the word or its implications may not be understood.
In my most recent blog What Do You Want From Your Doctor, I shared a response to this question by a patient who participated in the Writing is Good Medicine® program I facilitated at Southwestern Vermont Regional Cancer Center.
In previous blogs I described my role as a medical humanist at Southwestern Vermont Regional Cancer Center (2002-2005) where I documented the patient’s understanding of their diagnosis, prognosis, treatment plan and the impact of their illness on themselves and family.
Always interested in receiving feedback about the “Difficult Conversations Toolkit”, a patient asked me if I would read what she had written. “I am unsure,” she said, “of how I have structured it.”
“I’d be pleased to read what you have written,” I said.
“Few patients realize how deeply they can affect their doctors,” notes Dr. Scott Haig. In his Time Magazine article (10/5/2007) he goes on to say, “That is a big secret in medicine, which doctors hate to admit.
I recently stumbled upon a writing exercise completed by a patient who participated in the “Writing is Good Medicine”TM, program, which I created to help patients put words to their experience of living with illness. Participants were encouraged to share their writing with family and healthcare providers in order to open communication about issues and concerns. For one exercise I posed the question, “What do you expect from your doctors?”
UNCERTAINTY IS THE REFUGE OF HOPE
The Journal Intime
Henri Frederic Amiel
Recently, I was reminded of a patient from time passed who had asked me, “How does one live with uncertainty?”
In The Wounded Story Teller writer and patient Arthur Frank notes, “When a doctor tells us we are sick they are not just diagnosing us—they are initiating a new chapter in the story of our lives. What would it be like for patients to tell their stories and doctors to read them?”