Image by Chris Liverani on Unsplash.
In his long-ago New York Times op-ed piece, “How Long Have I Got Left,” Paul Kalanithi eloquently describes his dilemma when faced with an open-ended diagnosis.
Dr. Kalanithi was a neurosurgeon in his final year of residency. He loved his field and he particularly loved operating. Tragically and unexpectedly, he was diagnosed with Stage 4 lung cancer.
Reflecting on his condition, Dr. Kalanithi wrote a beautiful book, When Breath Becomes Air. That book has been an international best-seller, inspiring millions of readers who relate to his situation.
His book will be relevant to almost everyone, particularly those conscious of growing older. Even healthy people realize their chances of dying increase each year, even when they appear healthy. Apart from the lesser probability of dying from an accident in your youth, everyone faces the question he poses, “I don’t know if I’ve got 6 months, 10 years or much more.”
However, I disagree with Kalanithi when he writes in the Times article, “What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own.” And we won’t find solace in statistics: “The angst of facing mortality has no remedy in probability.”
True, some patients do not want a doctor who’s a scientific expert, providing research-based information to help patients make informed decisions. They want a doctor who’s a high priest of a cult with access to secret mysteries.
The oncologist’s know-it-all attitude? Appropriate, says Kalanthi.
The truth is, when you look up articles about your own disease, you gain a new perspective. You might realize you are an outlier and the “average” risks don’t apply to you. You might realize your doctors are being overly optimistic and decide to make your own plans.
Why not allow dying patients – in fact, all patients – to have access to real numbers, if that is their choice? For some of us, statistics would truly relieve the angst.
I frequently recommend a wonderful article by Moshe Frenkel, Refusing Treatment, published in the very respectable Oncology journal. A 38-year-old woman, Suzana, was diagnosed with Stage 3 breast cancer. Suzana’s oncologist was furious when Suzana declined chemotherapy.
Suzana asked Dr. Frenkel, her primary care doctor, two questions.
First, what was the percentage of success for chemotherapy? Expecting 70-80%, Dr. Frenkel was shocked to discover it was just 30%.
Second, what percentage of people who refused treatment recovered, compared to those who accepted treatment? Again, Dr. Frenkel was shocked to discover the difference was a mere 6%.
Suzana announced, “For six percent, I’m keeping my hair.” Her oncologist refused to speak to her again.
Ten years later, Suzana wrote a book: Six Months To Live, 10 Years Later. It’s out of print and nearly impossible to obtain.
Statistics brought optimism to Suzana and influenced her choices. I suspect many people would respond the same way.
Then again, some don’t want to know. I’ve met many women who absolutely refuse to explore the statistics of mammography and bone density screening. I’ve met highly educated people who say, “I like getting a physical exam. I walk away knowing everything is fine.” They certainly aren’t reading books like Less Medicine More Health.
It’s their prerogative. I’d never tell anyone to refuse treatment or skip a screening.
But I’d like to see the medical profession recognize that we’re not at all like Dr. Kalanathi, who died tragically young just as his career was taking shape, leaving behind a deservedly popular legacy with his book.
