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.”
While digging through files, I stumbled upon comments made by reviewers of “Art Informs Medicine,” an article that I submitted to the Journal of Clinical Oncology in 2010. The reviewers were oncologists. And, it was they who would decide whether my piece would be accepted for publication in a journal for cancer care professionals.
Almost 20 years ago four cancer patients were interviewed for the Voices from the Lived World of Illness video, which we produced at the Center for Communication in Medicine. Sitting side by side, the patients were asked for their suggestions about what would be helpful in educating doctors about the experience of patients.
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.
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.
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.