Today, cancer is not a death sentence…
I was one of four panelists invited to participate in a discussion at the Manchester (VT) Community Library following a screening of the documentary Cancer: The Emperor of All Maladies, based on the book by Dr. Siddartha Mukherjee. Each of us would be asked to respond from our professional perspectives and limit remarks to 5 minutes, to assure enough time for attendees to comment and ask questions.
As it so happened, the moderator, a physician himself, chose not to begin with the radiation oncologist, psychologist or cancer survivor but with me – a writer, who implemented the pioneering role of medical humanist at the cancer center in Bennington, VT.
I began with the words of Terry Tempest Williams for her skillfulness as a writer to freeze frame a moment in time and capture the impact of how language shapes our experience.
“Cancer. The word has infinite power. It kills us with its name first because we have allowed it to become synonymous with death.”
Today, cancer is not a death sentence… But it is often the only word people hear the doctor say. I will never forget the patient when asked what he understood about his diagnosis told me, “Bad news is not heard in complete sentences.” Nor can I forget the expression on the oncologist’s face upon reading these words in my medical humanist’s note. He was quick to assure me that he asked the patient if he had any questions and he said, “no.”
After reading Williams’ riveting words, I addressed the group sitting before me emphasizing my gratitude for the extraordinary strides in new cancer therapies. That said, I would have been remiss, given my professional work bridging the communication gap between doctors and patients, if I didn’t acknowledge that with the growing excitement about treatment options comes a greater responsibility—for doctors to communicate clearly and honestly about the risks and benefits of new therapies as well as patients and loved ones to identify and voice their concern—the goal being to get everyone on the same page.
In the documentary Dr. Mukherjee cautions us, “Hope is tricky.” Why? It can divert attention from possible (or likely) physical and psychological side effects or death, which begs the question why the patient may be interested in a clinical trial. Is the patient’s participation motivated by a wish to save their life at any cost? Or, as one patient told me, “I don’t want anybody to think I gave up. And, I have that fear because I have a choice to make.” Perhaps, their decision is based on the belief that participation would benefit future patients.
Yes, hope can be a tricky business. Communication about the expectations of treatments is a shared responsibility—in the doctor’s laying out the risks and benefits of new therapies and the patient’s understanding of their motivation for participating in a clinical trial.
This piece goes directly to the heart of the many issues raised by a cancer diagnosis. The writer talks about the power of the word cancer, which indeed is one of the most powerful words in our language. It is often whispered, as if it is something shameful, or avoided, and it is equally powerful in this context in not being spoken as if to name it were to utter a curse. The importance of words is too often underestimated. Doctor’s words, patient’s words or silence, all mean so much. The dialogue that this organization has started, with all of us, patients, doctors, future patients, future doctors and health care workers, is necessary. I am so grateful for your work!
If we are going to talk about language, we must acknowledge that we use the word “cancer,” to describe a wide array of diseases that range from curable with minimal risk or side effects from treatment, to virtually incurable. Cancer IS a death sentence if you find out you have Stage 4 pancreatic cancer or a GBM. We need to create an understanding of these differences so that someone with a basal cell is not terrified, but those with little or no hope are not rushed into difficult treatment. With respect to the later, Chasing Daylight by Eugene O’Kelly, is the author’s account of how he chose to embrace death and truly experience the end of life. Without treatment, he managed to create meaningful time with friends and family in the brief months between diagnosis and death, an option seldom offered.
Thank you Cecil for these astute comments, especially describing the various shades of HOPE. Clarifying that for the person with cancer, the family, and the doctor would be invaluable. The person with cancer could then identify his/her motivation and look more carefully at the expected outcomes . Thank you for this important work. Mary Andersen
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