Ventilators and their vital role in saving lives of COVID-19 patients are ever present in the news. Listening to these compelling stories brought to mind an experience with a patient as he weighed the use of a breathing machine in his end of life care.
“In times of crisis we summon our strength…
call on every resource…every forgotten image…
every memory that can make us know our power.”
– Muriel Rukeyser
How does one live with uncertainty when facing a life-threatening illness? Where does one find inner strength? Where does one look for supportive resources? Most patients will tell you that they frequently ask themselves these questions.
Those familiar with my work as a medical humanist would not be surprised to hear that I’m still having conversations with patients about the challenges of navigating the healthcare system.
It’s a new year but I find myself reflecting on times past. So much for the lyrics of Auld Lang Syne, “Should old acquaintance be forgot and never brought to mind.”
What catapulted me back in time was a recent article in the Journal of The American Medical Association (JAMA) that highlighted the patient’s perspective of illness.
Adrienne Barnes, a nurse diagnosed with pancreatic cancer, was featured in “Voices From The Lived World of Illness,” a video produced by the Center for Communication in Medicine. During the interview she shared her frustrations when her doctor tells her “there’s really nothing I can do for you.”
The Center for Communication in Medicine, which I am a founder, decided that our next SpeakSooner Community Education Program on October 26 in Bennington would focus on the theme of transforming a medical crisis into an opportunity to find meaning and joy in one’s life. Planning this event brought to mind a woman whom I had known from time passed.
In my most recent blog What Do You Want From Your Doctor, I shared a response to this question by a patient who participated in the Writing is Good Medicine® program I facilitated at Southwestern Vermont Regional Cancer Center.
Always interested in receiving feedback about the “Difficult Conversations Toolkit”, a patient asked me if I would read what she had written. “I am unsure,” she said, “of how I have structured it.”
“I’d be pleased to read what you have written,” I said.
“Learn the art of fragmented, irrational conversations and follow
the patient’s lead instead of trying to control the dialogue.”
Zen and the Art of Coping With Alzheimer’s
In the days when there were video stores I would walk by the film “Iris” countless times, knowing it was a story of the writer Iris Murdoch and her husband’s experience with her cognitive decline due to Alzheimer’s disease.
I recently stumbled upon a writing exercise completed by a patient who participated in the “Writing is Good Medicine”TM, program, which I created to help patients put words to their experience of living with illness. Participants were encouraged to share their writing with family and healthcare providers in order to open communication about issues and concerns. For one exercise I posed the question, “What do you expect from your doctors?”