I was both pleased and relieved to read “Shifting to Serious Illness Communication,” an article recently published in the Journal of the American Medical Association (January 7, 2022). Drs Juliette Jacobsen, Rachelle Bernacki, and Joanna Paladino reference a recent study that showed the shortcomings of advance care planning as an accurate predictor of end of life care decisions. In light of the findings, the authors advocate for a communication intervention to “ensure that patients and families feel respected and supported, and retain a sense of purpose and control despite living with the uncertainties of serious illness.”
How Can A Patient Be Sure?
How can a patient be sure that their doctor understands what he or she expects?
First and foremost, a “working relationship” between a doctor and patient requires communicating about the lived experience of illness beginning at diagnosis, through changes in health status and when weighing preferences for end of life care.
Going Low Tech
We are grateful for and in awe of high-tech innovations that have improved diagnostic testing and treatments. Technological advances have changed how we diagnose and treat diseases, which has resulted in people living longer and in some instances being cured. What can get overlooked when dazzled by shiny objects is the process by which thoughtful and informed decisions about care are made. This interactive communication process remains in the domain of low-tech. Without clear communication, it would be difficult for a patient to understand their health status and risks and benefits of treatment choices, which could lead to unintended and regrettable consequences.
What If I Don’t Understand?
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.
Communicating About Hope
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.”
Taking Silence as Comprehension
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.”
I Will Not Die an Unlived Life
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.
Patient Resource Consultant
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.
Gordian Knot
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.
In a Word
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.”