Recently, a friend went to the emergency room with complaints of severe GI pain and was admitted to the hospital. Naturally, she was worried about the cause of her symptoms, which she had been experiencing on and off for 6 months. Under the care of her family doctor she tried several medications but none seemed to alleviate her pain entirely. Now, the doctor who she had known for many years and trusted was no longer involved in her care. Instead, a hospitalist appeared at her bedside and would be in charge of the case.
A Medical Humanist's Notes
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.
“Learn the art of fragmented, irrational conversations and follow
the patient’s lead instead of trying to control the dialogue.”
Zen and the Art of Coping With Alzheimer’s
In the days when there were video stores I would walk by the film “Iris” countless times, knowing it was a story of the writer Iris Murdoch and her husband’s experience with her cognitive decline due to Alzheimer’s disease.
“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?”