More has been written about Atul Gawande’s book Being Mortal than on most other books on medicine and health, combined. It was reviewed in the New York Times, The Guardian, The Wall Street Journal, and dozens of other newspapers, magazines, and other publications large and small. Its study of how the medical profession handles the process of dying — whether that process comes at the end of a full life or far too soon — has changed the national narrative. Doctors are coming around to the idea of supporting patients on their own terms as the end draws near, a concept which, to many, seems antithetical to their oaths. After all, are they not charged to “do no harm?” Gawande’s Being Mortal forces the discussion and redefinition of “harm.”
In an early chapter of the book, he writes that there are two kinds of courage. “The first,” he says, “is the courage to confront the reality of mortality—the courage to seek out the truth of what is to be feared and what is to be hoped when one is seriously ill. Such courage is difficult enough, but even more daunting is the second kind of courage—the courage to act on the truth we find.” As he shares the stories of his own patients — choosing between risky surgery and an uncomplicated but speedier end; finding ways to maintain autonomy as they age; managing varying levels of discomfort while remaining lucid and cogent — it is clear that all the scenarios where his courage to “act on the truth we find” are predicated on the first courage to “seek out the truth of what is to be feared.”
In other words, there can be no action toward healing without first determining how his patients define healing.
I read this book late at night, propped against my knees in bed, my husband reading and dozing beside me. I know, of course, that one day we will be old — and perhaps, one or both of us will be terminally ill — and these questions will be ones we will have to answer for each other and for the physicians who will care for us. In my quiet house, the reading light flickering, I felt my heartbeats quicken. Someday, I will need to plan for my own death. The thought chilled me, but in the light of the next morning, another thought stopped me in my tracks.
If it’s true that there can be no action toward healing without a real definition of what “health” is to each individual person, why is this conversation limited to end-of-life?
Of course, I am thinking of my daughter Sammi, the “sunshine” of this blog. When she sat at our kitchen counter and gagged down bowl after bowl of hot oat bran cereal, all the while feeling it fill her esophagus above the compression we didn’t know was there, I never once felt compelled to ask her whether anything we were doing was making her feel any better. Of course, I asked more pointed questions: does this taste good? can you eat this without coughing? does this hurt your throat? Still, I never asked “do you feel healthier than before we started this elimination diet?”
I never asked, “what do you wish felt better, in your body?”
I never asked, “does your swallowing and gagging make you feel bad?”
I just began taking her to doctors and doing whatever they said we should do. When they told us to be patient, we were patient. When they told us to do invasive tests, we did invasive tests. When they told us to have her eat normally again, we gave her normal foods again. None of it changed her reticence to eat, and none of it made it worse. She went on, quietly eating poorly, no matter what we did. Still, it wasn’t until I saw the first big mistake that I vocally disagreed with a doctor’s suggestion of how to treat my daughter. At no point, however, did any doctor ask my child or me what was most important to us.
No one asked us to define “health” for her.
No one asked us what our goals for her were.
Of course, for Sammi, her goals were probably too hard to describe. Even for her final surgery, she was only eight years old. As her mother, though, I could have at least tried to answer those questions. I would have defined health as “being able to fuel her caloric needs within a reasonable time frame at each meal.” I would have defined our goals as “more than two inches and two pounds of growth per year.” I would have defined a “healthy life” as “one with fewer medical interventions.”
Perhaps knowing those answers, doctors would have still made the same recommendations that they did — but, perhaps, they would have made different ones. Perhaps if they had known — or cared about — our priorities for Sammi, they would have come to other conclusions altogether, some of which might have seen her receive the diagnostic tests that eventually (too late) steered us in the right direction.
Gawande’s Being Mortal should change the conversation on more than end-of-life care. It should change the conversation on care, altogether.
This has been a Finish the Sentence Friday post, where this week’s prompt is from Kristi Campbell of FindingNinee.com and Kenya Johnson of Sporadically Yours and is “The last book I read was…” Technically, this isn’t the last book I read, but I did read it in 2018. I hope that’s close enough!