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.
A Medical Humanist's Notes
The importance of recognizing a patient’s perspective in weighing healthcare decisions is gaining more traction, evidenced by an increasing number of articles in medical journals that refer to the “patient’s voice” in describing how one’s personal experience of illness influences treatment choices and setting goals of care. There’s also a movement called “Narrative Medicine,” which encourages healthcare providers to listen carefully to the patient’s story in helping to better understand the circumstances in which illness is occurring. And, I’m sure we’ve all noticed how it’s become popular for healthcare organizations to use slogans that declare they offer “patient-centered care.”
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.
In 1999, oncologist Dr. Letha Mills, psychologist Dr. Bernard Bandman, patient Patricia Barr and I, a medical humanist, were invited to present a lecture at Brown Medical School. The topic was “Humanism in Medicine.” Our intent was to identify barriers and solutions to the practice of humanistic medical care.
What happens when a doctor becomes a patient? Is their experience of illness any less challenging than for the rest of us? These questions have been the topic of books, movies and journal articles. I imagine many people believe that those who are members of the healthcare community are above the fray, getting special attention that is not readily available to other patients. Well, it’s true there’s a professional network into which they can tap but it may not be that simple.
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.