Ten years ago my notion of being a good patient was to listen not communicate and leave. I needed to know [then] I had the right to ask. I learned quickly it was all about communication. Patients must feel they have permission to tell doctors, ‘I don’t understand…you need to say it in simple terms,’’ said Brian Gawlik a cancer patient who managed his illness for over a decade before undergoing a bone marrow transplant.
I was recently sent Holding Hope for Patients with Serious Illness (Journal of the American Medical Association, September 16, 2021), which explored the complicated issues that doctors face in discussing “hope” with patients facing a poor prognosis. The article reminded of when I was on staff at Southwestern Vermont Regional Cancer Center (2003-05) and how my medical humanist’s notes provided insight into the patients understanding of their prognosis to the oncologists and nurses. There were patients who were unrealistic about their future, some were pessimistic and awaiting a dire outcome and others just didn’t know what to expect. In listening to patients I learned that hope could change over time. Adrienne Barnes, a patient featured in our video “Voices from the Lived World of Illness,” said, “Hope is different moment to moment, day to day and week to week.”
Who among us likes to talk about dying?
In a recent blog “Taking Silence for Comprehension,” I talked about how patients may not understand the risks and benefits of treatment options and quality of life considerations and may not know what questions to ask. Similarly, when doctors bring up the subject of end of life care goals, it is not unusual for patients to be silent. I recall a patient saying to me, “I never died before, I don’t know what questions to ask. I really have to think about how I’m going to die.”
I can’t tell you how often I’ve heard patients say that they didn’t know what questions to ask. Others have said that they were too intimidated to question a doctor. I recall George Lewis, who appeared in our video Voices from the Lived World of Illness saying, “You hear but you don’t comprehend. A day or so later you wish you would have asked questions.” In the same video Pat Barr states, “Doctors take silence as comprehension.”
In my July 7 blog Patient Resource Consultant, I shared the circumstances in which I found myself unexpectedly working in cancer care. In essence, Pat Barr, a breast cancer patient and a good friend, convinced the Bennington cancer center’s medical director to hire a patient advocate and volunteered me. Reluctantly, I accepted but changed the job title to “patient resource consultant,” which more accurately described how I envisioned my role.
Upon reviewing SpeakSooner: A Patient’s Guide to Difficult Conversations, Dr. Joe O’Donnell, former Dean at Dartmouth Medical School and Chief of Oncology at the White River Junction VA Medical Center, said, “ With a tool like the Center for Communication in Medicine’s Difficult Conversations Guide, we can get on the same page as our patients, but even better, march together into a frightening future, more aligned with each other and able to support the chaotic journeys that having cancer brings.”
In my blog “With Great Difficulty or More Fully” (July 24, 2021), I referenced an article written by Dr. Ira Byock in which he discussed how doctors faced the end of life. Whether it was coincidence or not, only a few days after reading Dr. Byock’s article, a friend sent a poem by Dawna Markova (Awakin.org) titled “I Will Not Die an Unlived Life.” I’d like to share it with you.
A few days ago, I came across a folder on my computer that contained a New York Times article (June 30, 2016) titled “At the End of Life, What Would Doctors Do?” by palliative care physician Dr. Ira Byock. The article explored what doctors think when facing death, referencing Dr. Ken Murray’s online essay “How Doctors Die,” which offered a personal observation that doctors who recommended late-stage treatments may not prescribe the same for themselves.
In digging through files, I discovered a job description of my first position in the world of cancer care. Memories flooded in, including how I initially refused to accept the job. Let me tell you how the door was opened.
The other day a dear friend Rachel Hadas emailed to tell me that she “loves the intuitive wisdom, in cutting through Gordian Knots, that I demonstrate in my blogs.” I liked the sound of what she was saying but wanted to be sure that I understood the meaning of her words. So, as I often do, I looked up the definition of Gordian Knot. You see, Rachel is a renowned poet and professor of English Literature at Rutgers University and her metaphors are chosen with care.