In a New Yorker article “Why Storytelling Is Part Of Being A Good Doctor” (July 25, 2022) Dr. Jerome Groopman confides, “For two decades, I had seen my patients and their loved ones face some of life’s most uncertain moments, and I now felt driven to bear witness to their stories.” He tells us how he felt inspired to write about his experiences as a doctor as had others before him.
I often think of my dear friend Brian Gawlik who had been managing his illness for over a decade when we interviewed him in 2008 for our Speak Sooner newsletter (before I began writing a blog for the website). I continue to be inspired by his wise words.
I recently discovered an email from Dr. Zail Berry, a physician with expertise in internal medicine, palliative care and Hospice. Several years ago, we had asked her to review SpeakSooner: A Patient’s Guide to Difficult Conversations, a tool I developed to help patients identify questions and concerns. Dr. Berry’s comments were especially important because of how often our materials and programs to improve doctor-patient communication have only been associated with cancer care, not other serious illnesses.
I recently discovered a copy of Doctor-Patient Magazine from fall 2005 in which I was interviewed about my role as a medical humanist at Southwestern Vermont Regional Cancer Center. The article’s byline was “Bridging the Gap.” I spoke about the different languages used by doctors and patients, noting that one is the talk of treatment […]
I’ve often been asked if our programs to improve doctor-patient communication have been incorporated into medical education. I can tell you that over the years we presented the Center for Communication in Medicine’s medical humanism work at Brown Medical School, New York University Medical School, University of Vermont College of Medicine, MD Anderson Cancer Center and Stanford Medical Center. It was certainly flattering to receive these invitations but we also learned something that helped shape our organization’s thinking in developing programs to bridge the communication divide between doctors and patients. Time and again we heard faculty and students talk about the challenges of incorporating communication skills training in curriculums that were already saturated with medical science courses and clinical training. I’d like to share some of what we learned.
“In illness…words give out their scent… at last we grasp the meaning, it is all having come to us sensually first, by way of the palate and the nostril…” Virginia Woolf, “On Being Ill” (1930) Taped to my telephone receiver is a message. Under ‘reason for call’, the word “Urgent” is checked. I […]
So, how does someone find themselves creating the role of a medical humanist? I can tell you that there were signs a long time ago. As a little girl I’d often position myself to overhear conversations between adults, usually family and friends. I would repeat what I heard to my mother but she usually dismissed what I reported. She’d often say, “They didn’t say that. Don’t make trouble.” Somehow, I never gave up on naming “the elephant in the room” when I saw one. In my adult years I came to understand that my mother was trying to protect me from learning about the harsh realities of life.
I recall a patient’s husband recounting what his wife’s oncologist said when her cancer progressed and was no longer curable. The doctor told her to adjust her outlook “to living with cancer rather than dying from cancer.” At the time of that conversation, I was involved in his wife’s care in my role of medical humanist at the cancer center in Bennington, VT. Her husband told me that “I not only provided a bridge between the doctor and the patient but also between the patient’s present and future.” These were humbling words but I say them because of how difficult it is to live in “no man’s land.” What I did for this patient and her husband was document their concerns about the oncologist’s statement so it could be addressed at their next office visit. Words are words but the experience of hearing them can be something entirely different.
Until it becomes something a patient must think about firsthand, the word “prognosis” can seem unfamiliar, even abstract. Many patients feel uncertain about what their prognosis actually means, even after speaking to doctors.
I recently found an email that dates back to 2000, when I was a medical humanist at Southwestern Vermont Regional Cancer Center. It struck me how the concern expressed by this patient is as timely today as it was back then.