One of my favorite quotes is from the book Cutting For Stone by Abraham Verghese. He wrote: “…what treatment in an emergency is administered by ear? …” to which the answer was ‘Words of comfort…’.
Words of comfort can have a meaningful impact on how a diagnosis and its treatment are understood. While the words alone mean one thing, the tone and expression of those speaking have the potential to mean another. So does the receptivity of the listener.
That, however, is a different conversation. What I wanted to write about today is the enormous burden medical professionals face when giving a diagnosis, particularly a life-threatening or terminal diagnosis. The power to identify, treat, possibly cure an illness attracted them to their profession; speaking words of discomfort did not.
It’s hard to imagine how one prepares themselves to do this; no training could possibly plan for each situation and the individuals involved. As humans who’ve chosen a career in healing, how can they not want to offer comfort, to console? Yet, the fear of misleading must weigh heavily and affect not only what they say, but how they say it.
As patients and care partners, so much hangs on the words and their conveyance. The medical professional as the bearer of knowledge, whether they are revered or doubted, commands a position of power regardless of how human and approachable they are. Their every word and gesture is weighed and scrutinized, if only because the recipients want to hear anything other than what they are being told.
When I first envisioned Caregiven, I thought it could be used as a tool to lessen the burden on these medical professionals at this time. Naively I thought that the conversation could go: Doctor: “I’m sorry to tell you that you have Stage IV esophageal cancer which has a 5-year survival rate of 5%. But here is this app that will help you on your end-of-life journey.”
The Caregiven app does offer comfort. It guides and empowers care partners to initiate important conversations around end-of-life care that should begin within the family, for them to be better prepared for medical appointments and better listeners during their visits, and to understand that while there is grief and heartache at the end, the fear of those things need not influence every step of the journey.
Referring the app won’t become a comfort to medical professionals until we change the conversation around acceptance of our impending death and the end-of-life period preparing for it. Which Caregiven aims to do as well. Until then, I hope to remind everyone that the individuals conveying our worst fears are human, and often feel at a loss as to how comfort us, as we are to hear their words.