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.
It’s Not Going To Hurt
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.
A Tough Subject
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.”
With Great Difficulty or More Fully
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.
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.
Filling a Void
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.
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.”
Willingness to Do the Best We Can
I was recently re-reading an email exchange with Dr. Skip Durning, who at the time was director of Hospitalist services at North Adams Regional Hospital. He wrote to me following a presentation to hospital staff that included our video “Voices from the Lived World of Illness.” After the viewing, the discussion with attendees highlighted the challenges of healthcare communication, especially when someone is seriously ill.
Not to Be Forgotten
We have all lost loved ones. Although not forgotten, the departed can recede to the back of our minds unless prompted by a memory such as a photo, song, written note or countless other things personal to the relationship.
Looking for a Doctor
“When I was first diagnosed, I felt I didn’t need you,” she said. “After all, I am a nurse. I know how to get what I need in the medical system. I speak their language. Now I find that I need your help.”