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.
“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.
A recent New York Times article “Cancer Patients Are at High Risk of Depression and Suicide, Studies Say” (Jessica Wapner, March 28, 2022) noted that “five percent of patients were diagnosed with depression after a cancer diagnosis, and the same was true for anxiety.” From my experience, this is a low estimate. For anyone who has faced cancer, it’s certainly not a surprise to read that depression and anxiety are side-effects. However, for oncologists focusing on treating the disease, psychological adjustment problems may not be in the forefront of their minds.
I was recently digging through piles of papers when a copy of a patient’s written response to one of the chapter exercises in SpeakSooner: A Patient’s Guide to Difficult Conversations (Guide) caught my attention. The answer to the question “What do you need from your healthcare team” stopped me in my tracks. The patient wrote in capital letters, “RESPECT OUR INTELLECT. RESPECT OUR CAPACITY.”
As a medical humanist, I think about barriers and solutions to effective communication between patients and healthcare providers. We understand that patients facing serious illness are frightened and overwhelmed by an uncertain future, no less entering a world that speaks a foreign language. It is not unusual for patients to be silent as they try to absorb what is happening to them.