There are no rules for proper behavior, conversation or actions when there’s an advancement of a serious illness and no viable treatment options. Patients can find themselves confused when trying to communicate with family and friends about a dire prognosis and an uncertain future. This brings to mind what a friend with advanced breast cancer […]
In the video that accompanies SpeakSooner: A Patient’s Guide to Difficult Conversations, we hear Fritz acknowledge that the rewards of continuing treatment more than exceed the risks but he recognizes there are no guarantees. Living with advanced prostate cancer, Fritz states that he and his wife decide together “to do whatever my physician thought was […]
“I am pleased to inform you that your manuscript ‘Art Informs Medicine’ has been accepted for publication in the Art of Oncology section,” the editor noted. I was well aware that this meant that my work was going to appear in an issue of the Journal of Clinical Oncology (April 20, 2010). I was thrilled. The essay was based upon my experience as a medical humanist at a cancer center. Although it was published 12 years ago, I am still amused by the reviewer’s comments about a submission to a professional journal from someone with no medical credentials.
Over the years I’ve facilitated Writing is Good Medicine™ programs at the cancer center in Bennington, community workshops and conferences. More recently, due to safety concerns with COVID, online programs have been offered through my blog “A Medical Humanist’s Notes.” I must admit that I miss being in the room with participants but I’ve come […]
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.
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.
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.”
A few days ago, I came across a folder on my computer that contained a New York Times article (June 30, 2016) titled “At the End of Life, What Would Doctors Do?” by palliative care physician Dr. Ira Byock. The article explored what doctors think when facing death, referencing Dr. Ken Murray’s online essay “How Doctors Die,” which offered a personal observation that doctors who recommended late-stage treatments may not prescribe the same for themselves.
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.
Most of us recognize the challenges healthcare institutions face in balancing budgets in a time of escalating costs. So, how do hospital administrators decide what projects or services should be funded and what are expendable? It seems that in most instances the basic principle of “income producing” is what determines what stays or goes.