A simple question stops surgeon Atul Gawande in his tracks as he considers the future of an elderly patient. The woman’s ruptured colon has triggered an all-too-familiar crescendo of medical crises – a heart attack, septic shock, kidney failure, and now the impending amputation of a gangrenous foot. She’s on dialysis, a feeding tube, and a respirator.
“Is she dying?” one of the woman’s sisters asks when they meet to map out a treatment plan.
Gawande realizes he has no idea how to answer. “I wasn’t even sure what the word ‘dying’ meant anymore,” he writes in Being Mortal: Medicine and What Matters in the End. The relentless forward march of medical technology means the woman’s heart is in no imminent danger of stopping. But as for her chances of resuming anything resembling what she would consider “living” – well, that’s another word whose meaning is increasingly muddy.
With the Carter case on assisted suicide currently before Canada’s Supreme Court, the fraught debate over how we die – and how we should die – is once again in the headlines. But contrary to what you might expect, Gawande, a professor at Harvard Medical School as well as a New Yorker staff writer and author of three previous bestsellers, doesn’t even mention assisted suicide until the final chapter, and then only as a brief aside (he’s not particularly enthusiastic about it). Instead, his primary concern is how we spend the time allotted to us, whether it’s hours, weeks, or even years, once it becomes clear the sands have almost run out.
For most of human history, the knowledge that you were going to die was followed with little delay by your actual death. Within this constrained frame, bestselling guides to ars moriendi, the art of dying, emphasized stoicism and the importance of coming up with something good for your last words.
At least our forebears were thinking about it. These days, the moment catches us unprepared, since no diagnosis is ever truly final – or at least, the point of no return is discerned only in retrospect. “You lie attached to a ventilator, your every organ shutting down, you mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place,” Gawande writes. “The end comes with no chance for you to have said good-bye or ‘It’s OK’ or ‘I’m sorry’ or ‘I love you.’”
And yet… it’s hard to fault the desire to fight for your life, as paleontologist Stephen Jay Gould pointed out in a 1985 essay titled The Median Isn’t the Message: “It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity,” he wrote.
Gould had been diagnosed three years earlier with a rare cancer whose median survival after diagnosis was just eight months. Following the full onslaught of experimental chemotherapy and surgery, he ended up living for 20 more years. Such examples are precisely what drives patients and their families to wearily re-up for another surgery or a fourth-line chemotherapy. The simple, wonderful fact is that sometimes it works.
Of course, the brutal math is that it usually doesn’t. To Gawande, the problem is not that we try so hard to extend life, but that we spend so little effort preparing for the alternative.
So what is the alternative? Gawande’s counterexample – and really, let’s give him credit for bringing some levity to a sombre topic – is Harry Truman, the crotchety 83-year-old who became a folk hero for refusing to evacuate his home at the foot of Mount Saint Helens in 1980. Everything he valued in life was in or around that home, and he refused to abandon it in exchange for safety – and died when the volcano finally erupted.
As ludicrous (to me, at least) as Truman’s example is, he at least moves the goalposts. There are things we value beyond the continued beating of our hearts.
The central message of the book is that we need to talk, early and often, about what end-of-life treatments and trade-offs we consider desirable or tolerable. “Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive,” a spinal tumour patient tells his daughter. “I’m willing to go through a lot of pain if I have a shot at that.” That crucial insight guides the daughter through tough decisions when a subsequent spinal surgery goes wrong.
The most poignant storytelling in the book deals with Gawande’s own father, who also develops a spinal tumour. For the senior Gawande, also a surgeon, ice cream and football are not enough, and his fear of paralysis dictates a different set of treatment choices. These examples conveniently illustrate that there’s no “right” answer – and no wrong answer either other than, “Gosh, doc, I don’t know what she would have wanted, so I guess you’d better keep going.”
All of this is so profoundly sensible that you begin to wonder who could possibly disagree. The answer is, more or less, no one. Doctors on the front lines struggle with these issues daily, and previous books like That Good Night: Ethicists, Euthanasia and End-of-Life Care, by Toronto journalist Tim Falconer, have grappled with the same issues and reached much the same conclusions.
Why, then, does Gawande’s book feel so important? Why have I already promised to lend my copy to half a dozen people?
My initial thought is that this is a Sisyphean topic that will never be “solved” once and for all. I read Falconer’s book in 2009 and resolved to have a conversation about it with my parents, but never really did. Even if I had, what’s needed isn’t so much a single conversation as an ongoing dialogue. As Falconer points out, “I hear plenty of friends say they want to die when get to the point where someone has to wipe their butts.” But this perspective often changes, he adds: you don’t know until you get there.
This may be too pessimistic a view, however. In 1991, doctors in La Crosse, Wisc., started a campaign to get people of all ages to discuss their end-of-life preferences with loved ones. Within a few years, 85 per cent of residents had filled out an advanced-care directive, up from 15 per cent. More than two decades later, La Crosse’s end-of-life costs are half the national average, and its elderly residents spend half as many days in hospital during their last six months.
In other words, widespread and lasting change in our attitudes to being mortal is possible. Maybe Gawande, who wields outsized cultural influence, can trigger it. In the meantime, I’ll be inviting myself over to my parents’ place for dinner this weekend.
Alex Hutchinson is a science and health journalist in Toronto.Report Typo/Error