Being Mortal(2014) - Atul Gawande

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Being Mortal : Medicine and What Matters in the End(2014) - Atul Gawande

(2014)

(2015)

Named a Best Book of the Year by The Washington Post, The New York Times Book Review, NPR, and Chicago Tribune, now in paperback with a new reading group guide

Medicine has triumphed in modern times, transforming the dangers of childbirth, injury, and disease from harrowing to manageable. But when it comes to the inescapable realities of aging and death, what medicine can do often runs counter to what it should.

Through eye-opening research and gripping stories of his own patients and family, Gawande reveals the suffering this dynamic has produced. Nursing homes, devoted above all to safety, battle with residents over the food they are allowed to eat and the choices they are allowed to make. Doctors, uncomfortable discussing patients' anxieties about death, fall back on false hopes and treatments that are actually shortening lives instead of improving them.

In his bestselling books, Atul Gawande, a practicing surgeon, has fearlessly revealed the struggles of his profession. Here he examines its ultimate limitations and failures―in his own practices as well as others'―as life draws to a close. Riveting, honest, and humane, Being Mortal shows how the ultimate goal is not a good death but a good life―all the way to the very end.

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In his weakened state, he faced considerable risks of debilitating complications afterward. The operation posed a threat of both worsening and shortening his life. But the neurosurgeon had gone over these dangers, and Lazaroff had been clear that he wanted the operation. All I had to do was go in and take care of the paperwork.

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This reality has been largely hidden, as the final phases of life become less familiar to people. As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did. Those who somehow did die at home likely died too suddenly to make it to the hospital—say, from a massive heart attack, stroke, or violent injury—or were too isolated to get somewhere that could provide help. Across not just the United States but also the entire industrialized world, the experience of advanced aging and death has shifted to hospitals and nursing homes.

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You become a doctor for what you imagine to be the satisfaction of the work, and that turns out to be the satisfaction of competence. It is a deep satisfaction very much like the one that a carpenter experiences in restoring a fragile antique chest or that a science teacher experiences in bringing a fifth grader to that sudden, mind-shifting recognition of what atoms are. It comes partly from being helpful to others. But it also comes from being technically skilled and able to solve difficult, intricate problems.

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This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing.

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Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. 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.

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Health professionals have a formal classification system for the level of function a person has. If you cannot, without assistance, use the toilet, eat, dress, bathe, groom, get out of bed, get out of a chair, and walk—the eight “Activities of Daily Living”—then you lack the capacity for basic physical independence. If you cannot shop for yourself, prepare your own food, maintain your housekeeping, do your laundry, manage your medications, make phone calls, travel on your own, and handle your finances—the eight “Independent Activities of Daily Living”—then you lack the capacity to live safely on your own.

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My grandfather could perform only some of the basic measures of independence, and few of the more complex ones. But in India, this was not of any dire consequence. His situation prompted no family crisis meeting, no anguished debates over what to do with him. It was clear that the family would ensure my grandfather could continue to live as he desired. One of my uncles and his family lived with him, and with a small herd of children, grandchildren, nieces, and nephews nearby, he never lacked for help.

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The arrangement allowed him to maintain a way of life that few elderly people in modern societies can count on. The family made it possible, for instance, for him to continue to own and manage his farm, which he had built up from nothing—indeed, from worse than nothing. His father had lost all but two mortgaged acres and two emaciated bulls to a moneylender when the harvest failed one year. He then died, leaving Sitaram, his eldest son, with the debts. Just eighteen years old and newly married, Sitaram was forced to enter into indentured labor on the family’s two remaining acres. At one point, the only food he and his bride could afford was bread and salt. They were starving to death. But he prayed and stayed at the plow, and his prayers were answered. The harvest was spectacular. He was able to not only put food on the table but also pay off his debts. In subsequent years, he expanded his two acres to more than two hundred. He became one of the richest landowners in the village and a moneylender himself. He had three wives, all of whom he outlived, and thirteen children. He emphasized education, hard work, frugality, earning your own way, staying true to your word, and holding others strictly accountable for doing the same. Throughout his life, he awoke before sunrise and did not go to bed until he’d done a nighttime inspection of every acre of his fields by horse. Even when he was a hundred he would insist on doing this. My uncles were worried he’d fall—he was weak and unsteady—but they knew it was important to him. So they got him a smaller horse and made sure that someone always accompanied him. He made the rounds of his fields right up to the year he died.

★

FOR MOST OF human history, for those few people who actually survived to old age, Sitaram Gawande’s experience was the norm. Elders were cared for in multigenerational systems, often with three generations living under one roof. Even when the nuclear family replaced the extended family (as it did in northern Europe several centuries ago), the elderly were not left to cope with the infirmities of age on their own. Children typically left home as soon as they were old enough to start families of their own. But one child usually remained, often the youngest daughter, if the parents survived into senescence. This was the lot of the poet Emily Dickinson, in Amherst, Massachusetts, in the mid-nineteenth century. Her elder brother left home, married, and started a family, but she and her younger sister stayed with their parents until they died. As it happened, Emily’s father lived to the age of seventy-one, by which time she was in her forties, and her mother lived even longer. She and her sister ended up spending their entire lives in the parental home.

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age heaping

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But age no longer has the value of rarity

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Perhaps most important of all, increased longevity has brought about a shift in the relationship between the young and the old. Traditionally, surviving parents provided a source of much-needed stability, advice, and economic protection for young families seeking pathways to security. And because landowners also tended to hold on to their property until death, the child who sacrificed everything to care for the parents could expect to inherit the whole homestead, or at least a larger portion than a child who moved away. But once parents were living markedly longer lives, tension emerged. For young people, the traditional family system became less a source of security than a struggle for control—over property, finances, and even the most basic decisions about how they could live.

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Modernization did not demote the elderly. It demoted the family. It gave people—the young and the old—a way of life with more liberty and control, including the liberty to be less beholden to other generations. The veneration of elders may be gone, but not because it has been replaced by veneration of youth. It’s been replaced by veneration of the independent self.

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Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset. And then a new question arises: If independence is what we live for, what do we do when it can no longer be sustained?

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Thomas laid out the thinking behind his proposal. The aim, he said, was to attack what he termed the Three Plagues of nursing home existence: boredom, loneliness, and helplessness. To attack the Three Plagues they needed to bring in some life. They’d put green plants in every room. They’d tear up the lawn and create a vegetable and flower garden. And they’d bring in animals.

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The chance to try a new way of improving the lives of the elderly was deeply appealing to her. She told me that it felt like “this great experiment,” and she decided that her task was to navigate between Thomas’s sometimes oblivious optimism and the fears and inertia of the staff members.

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This task was not small. Every place has a deep-seated culture as to how things are done. “Culture is the sum total of shared habits and expectations,” Thomas told me. As he saw it, habits and expectations had made institutional routines and safety greater priorities than living a good life and had prevented the nursing home from successfully bringing in even one dog to live with the residents. He wanted to bring in enough animals, plants, and children to make them a regular part of every nursing home resident’s life. Inevitably the settled routines of the staff would be disrupted, but then wasn’t that part of the aim?

“Culture has tremendous inertia,” he said. “That’s why it’s culture. It works because it lasts. Culture strangles innovation in the crib.”

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For Thomas, it was the perfect demonstration of his theory about what living things provide. In place of boredom, they offer spontaneity. In place of loneliness, they offer companionship. In place of helplessness, they offer a chance to take care of another being.

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philosophy of Loya

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The answer, he believed, is that we all seek a cause beyond ourselves. This was, to him, an intrinsic human need. The cause could be large (family, country, principle) or small (a building project, the care of a pet). The important thing was that, in ascribing value to the cause and seeing it as worth making sacrifices for, we give our lives meaning.

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The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror. But if you do, it is not. Loyalty, said Royce, “solves the paradox of our ordinary existence by showing us outside of ourselves the cause which is to be served, and inside of ourselves the will which delights to do this service, and which is not thwarted but enriched and expressed in such service.” In more recent times, psychologists have used the term “transcendence” for a version of this idea. Above the level of self-actualization in Maslow’s hierarchy of needs, they suggest the existence in people of a transcendent desire to see and help other beings achieve their potential.

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I asked Carson to explain her philosophy for enabling her residents to continue to live their own lives, whatever their condition. She said her philosophy was, “We’ll figure this out.”

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Making lives meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does. The routine solutions haven’t yet become well defined. So Carson and others like her are figuring them out, one person at a time. Outside the first-floor library, Ruth Beckett was chatting with a group of friends. She was a tiny ninety-year-old woman—more twig than trunk—who had been widowed years ago. She had stayed on in her house alone until a bad fall put her into a hospital and then a nursing home.

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This is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but to expand them, in the name of living a worthwhile life.

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https://youtu.be/4kEsEYG9OUg

https://youtu.be/mviU9OeufA0