Don’t Make Trouble

So, how does someone find themselves creating the role of a medical humanist? I can tell you that there were signs a long time ago. As a little girl I’d often position myself to overhear conversations between adults, usually family and friends. I would repeat what I heard to my mother but she usually dismissed what I reported. She’d often say, “They didn’t say that. Don’t make trouble.” Somehow, I never gave up on naming “the elephant in the room” when I saw one. In my adult years I came to understand that my mother was trying to protect me from learning about the harsh realities of life.

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No Man’s Land

I recall a patient’s husband recounting what his wife’s oncologist said when her cancer progressed and was no longer curable. The doctor told her to adjust her outlook “to living with cancer rather than dying from cancer.” At the time of that conversation, I was involved in his wife’s care in my role of medical humanist at the cancer center in Bennington, VT. Her husband told me that “I not only provided a bridge between the doctor and the patient but also between the patient’s present and future.” These were humbling words but I say them because of how difficult it is to live in “no man’s land.” What I did for this patient and her husband was document their concerns about the oncologist’s statement so it could be addressed at their next office visit. Words are words but the experience of hearing them can be something entirely different.

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“Normal” Side-Effect of Cancer

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.

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In a Patient’s Own Words

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.”

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Two-way Street

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.”

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Art of Medicine

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.

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Be Prepared

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.”

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Pieces of Conversations

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.

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