I started reading Atul Gawande’s new book, “Being Mortal” before Christmas and finished reading it today. As a physician, Gawande writes for the rest of us laypersons who are often at the mercy of physicians as our caretakers.
Many, as described in the book, are taught to make a difference by doing something medically about certain conditions, no matter what. They are not taught to be humanistic nor wise about how to think about how their medical “miracles” might not work as they hoped; nor to talk with people about what their fears are, what makes their time most precious to them and whether more procedures really make sense or not.
One of the most compelling story lines in the book is that of his own father’s illness, a tumor growing on his spinal cord. A surgeon himself, Gawande’s father decides to delay surgery until such time that he can’t perform surgery himself any longer himself. This turns out to be four YEARS later! As he descends into greater infirmity that progresses to being a near-quadraplegic, Gawande’s father tries radiation at the overzealous advice of a doctor, only to suffer from the treatments which debilitate him further and of no help.
Finally, a hospice nurse, in a matter-of-fact and direct manner, turned the tide so that he might live out his life in the way that is most meaningful for him: relatively pain free, freed of fear that he’s not doing the right thing with regard to medical choices, being more comfortable because his medications are being taken more consistently and documented as such. Being with his loved ones when he dies.
Doesn’t this sound like what we all would want if we had a chance to say so? Being comfortable and pain-free, not being afraid and being with our loved ones. Why should this be so hard for us to choose? Or a question to the medical community, why do physicians make it so hard for us to choose this over clinical protocols that we are told are not likely to work anyhow or might produce side effects that increase the severity of our suffering? Why is it so hard to avoid the medical train barreling down on us with increasingly difficult and costly measures that might help to extend our lives but which could also compromise the quality of whatever life that’s left in us?
About ten years ago, a friend named Margaret was diagnosed with a very rare form of bile duct cancer usually prevalent in middle-aged men over fifty. She was thirty-seven, a vegetarian and was learning how to kick-box. She was diagnosed in August. Her doctors said she had about six months to live if she did nothing. She was also told about experimental chemotherapy that would be painful and not likely to work. Her mother wanted her to do the chemotherapy so she did. I went to visit her in NYC early that Spring. She was brave and cheerful, dying three weeks later. Cancer ran through her family: first her Uncle, her sister, herself and her mother too. Chemo didn’t help any of them. But they tried it anyway, living out their lives by dying in the hospital. No one can make these choices except for the patients and their doctors. “Being Mortal” illustrates with examples how others have chosen given a different kind of dialogue between caretakers and those people who are ill.
Many of us will be faced with difficult medical choices if we don’t die first from accidents, sudden strokes and heart attacks. I hope that my daughters will read this book before we need it. It is one of those books that reminds of the old fairy tale, the Emperor with No Clothes–that everyone is shy to admit what is going on. In this case, it points out the obvious of what is NOT going on in medical academic curricula nor in common-sense training.
Most of all, it calls for training about how to talk to patients about treatments and their consequences. It calls for personal maturity by physicians to ask, and then to listen carefully to how PEOPLE (not patients) want to live before they die. And then for doctors to help give them as much time to accomplish that with recommendations for their care rather than pushing the clinical envelope, trying to be medical supermen.