Life Until Death

By the time I was 16, I had lost all my grandparents. As a child, these deaths never made sense, never added up to anything, other than loss. Sudden or pulverizing—as the inexorable crush of Alzheimer’s on my paternal grandfather and those who loved him, watching him disappear into haze, dependence, a nursing home, and then the hospital—it didn’t even seem it was their deaths, as if they were separated from their dying, along with us. At any rate, I never visited anyone in the hospital. It was too awful, I was told. I assumed this meant they were in pain and nothing good could come of seeing them in such a state. I have memories of my mother returning from visits to the hospital, where her mother was dying of leukemia, locked in torment. As an adult, I’m not sure I could now make any more sense of it. And yet, the reality of death is even more opaque and strange, mixed up by choice, fear, and medicine.

Perversely, dying has become a hard thing to do in America, old age a source of shame and virtual imprisonment. “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers,” writes Atul Gawande in his incriminating, important, and yet hopeful, humane, and quietly brave new book, Being Mortal: Medicine and What Matters in the End. In his three previous books, and across his pieces for the New Yorker, where he is a staff writer, Gawande, also a practicing surgeon at Boston’s Brigham and Women’s Hospital, has thoughtfully negotiated the triumphs and struggles of modern medicine. In Being Mortal, he confronts its terminal point, a broken marriage where medicine and the limits of our bodies coexist but don’t speak, where hard truths and honesty are in short supply, trading happiness for more time. “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that,” he writes. “It is to enable well-being. And well-being is about the reasons one wishes to be alive.” The fact that I have trouble making sense of my grandparents’ deaths is not simply due to the mystery of dying. Gawande convinces readers it also has much to do with the way we treat the last years of life.

Our final years are not naturally grim and terrible. This phase of life can be lived, managed, loved, and enjoyed like the last, fragile stage that it is. Geriatrics is an astonishing aid, Gawande shows, citing studies. Assisted living blazed a trail 30 years ago for independent life and continuing care. But end of life decisions are more often a game of numbers—played poorly. When life is on the line, five percent can seem like great odds. When an operation may give 10 years, but most often offers one, we think of the 10. Given other choices, with which medicine and technology have amply supplied us, we will choose virtually anything but death. We reach for radical options, opting for the ICU, surrendering our homes as debility creeps in, choosing—or being forced to choose—the safety and oversight of the nursing home over the autonomy and happiness that means so much to our sense of self and a meaningful life.

But it doesn’t have to be this way. Gawande shows us that finality can be a gift, distilling our hopes and joy. Being Mortal is a guide through the pain and confusion of old age and death that is generous, modest, and even felicitous about the end of life. Marshalling anecdotes, interviews with peers, and academic contemplations on life and happiness (from turn-of-the-century philosopher Josiah Royce to psychologist Laura Carstensen to paleontologist Stephen Jay Gould), Gawande charts how our lives and desires change as we age and how medicine and society have failed to come along for the ride.

With a doctor’s expertise and a writer’s sense for details and feeling, Gawande moves by turns and episodes. Recognizing that death is an emotional experience, he uses personal stories to cut through the abstract. He shares the story of his father’s response to an ill-placed but potentially manageable cancer. In this situation, Gawande is both son and doctor. His mother and father are both doctors. But between them, they are still just people with questions about a crisis they cannot resolve. In this and other instances, Gawande has a touching ability to put flesh and feeling to his narrative, surprising you with moments of immediacy and pause. He shares the loving, poignant experience of a colleague, Felix Silverstone, an 86 year old former geriatrician, and his wife. The elderly couple lives in a retirement community. Both of them are showing signs of the debility Gawande knows well to be implacable. Still, Felix “felt they knew each other, and loved each other, more than at any time in their nearly 70 years together.”

Throughout, the reader is treated like one of Gawande’s patients, never told what to do, but provided with information and context. Which is not nearly as easy as it sounds. Why don’t patients always choose hospice care when so often it suits precisely what they want? (Few people say they want to die in a hospital, on a ventilator.) Because we want to do something. We want to take action. We want more time. It takes a skilled, humane, and strong medical practitioner to not just review the options, but to understand patients’ desires and facilitate an honest discussion that will help them decide. Gawande knows when to provide the painful truth and when to travel through the options, considering how each person wants to live. It’s a skill that is difficult to teach, and, at the same time, perhaps the most important quality to possess, particularly when treating elderly and terminally ill patients.

Sure and comforting, Being Mortal made it important and possible to think about what comes next and revisit what had already passed. Speaking to my mother about my grandparents’ deaths, after I had finished the book, I learned my maternal grandmother died peacefully at home, in hospice care. So overwhelming and fearful were my feelings about death, I must have created a false memory. But it’s a memory I’m glad to lose.

Understanding and controlling what comes at the end is important, as Gawande shows. And not just for today, but for the future. We could be living better through our last days, and yet millions of us might not. But this book shows that it’s possible for end of life care to improve, for the dying and the living. Almost 20 years after her death, I am pleased to know my grandmother died as she wanted, without pain and in her home, the writer of the end of her own story.