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.”
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 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.
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.
I have always been interested in definitions. What frequently comes to mind is what Aristotle said, “A definition is a phrase signifying a things essence.”
It’s common practice for doctors to document a family history of medical problems. This can be useful information to diagnose presenting symptoms and to identify health issues to which we could be genetically predisposed. So, with this theme in mind, I’m sharing an excerpt from a short story titled “Michagas,” which I wrote many years ago. For those who are unfamiliar with the meaning of the word, it describes a certain ‘craziness’ that is indigenous to Jews.
You never know what you find when digging through old files. In one of many piles was a copy of a lecture presented at Brown Medical School in 1998 titled “Medical Humanism in Practice.” The authors were cancer patient, Pat Barr; psychologist, Dr. Bernard Bandman; oncologist Dr. Letha Mills; and me, at the time serving as a patient advocate at the cancer center in Bennington.
As patients, we often don’t know what questions to ask, especially when it comes to inquiring about a serious medical condition.
Somehow myself survived the Night
And entered with the day
Henceforth, I take my living place.
It is a “heart to heart.” It is not with me, but with him—him being someone with knowledge of the disease, with credentials and whom she trusts.