Those familiar with my work as a medical humanist would not be surprised to hear that I’m still having conversations with patients about the challenges of navigating the healthcare system.
A Medical Humanist's Notes
It’s a new year but I find myself reflecting on times past. So much for the lyrics of Auld Lang Syne, “Should old acquaintance be forgot and never brought to mind.”
What catapulted me back in time was a recent article in the Journal of The American Medical Association (JAMA) that highlighted the patient’s perspective of illness.
Adrienne Barnes, a nurse diagnosed with pancreatic cancer, was featured in “Voices From The Lived World of Illness,” a video produced by the Center for Communication in Medicine. During the interview she shared her frustrations when her doctor tells her “there’s really nothing I can do for you.”
The Center for Communication in Medicine, which I am a founder, decided that our next SpeakSooner Community Education Program on October 26 in Bennington would focus on the theme of transforming a medical crisis into an opportunity to find meaning and joy in one’s life. Planning this event brought to mind a woman whom I had known from time passed.
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?
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.
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.