I recently went to Salt Lake City for a family reunion. Among the relatives I saw was my only surviving grandparent, who is now 89 years old. He’s literally my oldest friend, and the oldest living human being that I know right now. His health is slowly deteriorating (he lost his driver’s license recently–which turns out to be not such a bad thing for the public at large, especially since, according to Gawande “The risk of a fatal car crash with a driver who’s eighty-five or older is more than three times higher than it is with a teenage driver. The very old are the highest-risk drivers on the road”), and I don’t know how many more trips I’ll have to see him. Since his mortality was on my mind, I thought it was a perfect time to read a book that I’ve been excited to learn with and think through ever since I first heard about it: Atul Gawande’s Being Mortal: Medicine and What Matters in the End.
The book itself is about the limits of medicine, how we care for our elderly, and how we die, with explorations of alternative paths towards medical treatment of the elderly, hospice care for the terminally ill, and alternatives to medicalized nursing care for the elderly who require assistance or care in performing daily tasks. It was well worth reading, and grew my affection considerably for geriatricians, hospice care, and most of all for Bill Thomas‘s notion of what a nursing home might be and Keren Brown Wilson‘s original ideals of assisted living. After finishing the book, I felt very clear that I wanted first to develop an advanced directive to specify my own desires at the end of my life, and then to have more frequent and more earnest conversations about aging and death with my parents and with my wife. I hope that I will be able to accept the limits of my own life, and that I’ll be able to feel (and abide) by the ideas espoused by Ezekiel Emanuel in his recent essay “Why I Hope to Die at 75,” particularly around medical procedures which would prolong, but not enrich, my life.
Some meaningful passages from Gawande’s book:
From the Introduction:
[W]hat strikes me most is … how much we all avoided talking honestly about the choice before him [they had been treating a man dying of painful cancer]. We had no difficulty explaining the specific dangers of various treatment options, but we never really touched on the reality of his disease. His oncologists, radiation therapists, surgeons, and other doctors had all seen him through months of treatments for a problem that they knew could not be cured. We could never bring ourselves to discuss the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life. If he was pursuing a delusion, so were we. Here he was in the hospital, partially paralyzed from a cancer that had spread throughout his body. The chances that he could return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance. We just had another treatment he could undergo. Maybe something very good would result.
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The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us off from all the things that matter to us in life. 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.
From Chapter 1: The Independent Self
[Demographers] have also noticed that, during the eighteenth century, in the United States and Europe, the direction of our lies changed. Whereas today people often understate their age to census takers, studies of past censuses have revealed that they used to overstate it. The dignity of old age was something to which everyone aspired.
But age no longer has the value of rarity. In America, in 1790, people aged sixty-five or older constituted less than 2 percent of the population; today, they are 14 percent. In Germany, Italy, and Japan, they exceed 20 percent. China is now the first country on earth with more than 100 million elderly people.
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There is arguably no better time in history to be old. The lines of power between the generations have been renegotiated, and not in the way it is sometimes believed. The aged did not lose status and control so much as share it. 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.
There remains one problem with this way of living. 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?
From Chapter 2: Things Fall Apart
[T]he advances of modern medicine have given us two revolutions: we’ve undergone a biological transformation of the course of our lives and also a cultural transformation of how we think about that course.
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[A]t the age of thirty, the brain is a three-pound organ that barely fits inside the skull; by our seventies, gray-matter loss leaves almost an inch of spare room. That’s why elderly people … are so much more prone to cerebral bleeding after a blow to the head—the brain actually rattles around inside. The earliest portions to shrink are generally the frontal lobes, which govern judgment and planning, and the hippocampus, where memory is organized. As a consequence, memory and the ability to gather and weigh multiple ideas—to multitask—peaks in midlife and then gradually declines. Processing speeds start decreasing well before age forty (which may be why mathematicians and physicists commonly do their best work in their youth). By age eighty-five, working memory and judgment are sufficiently impaired that 40 percent of us have textbook dementia.
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[F]or most of our hundred-thousand-year existence—all but the past couple of hundred years—the average life span of human beings has been thirty years or less. (Research suggests that subjects of the Roman Empire had an average life expectancy of twenty-eight years.) The natural course was to die before old age. Indeed, for most of history, death was a risk at every age of life and had no obvious connection with aging, at all. As Montaigne wrote, observing late-sixteenth-century life, “To die of age is a rare, singular, and extraordinary death, and so much less natural than others: it is the last and extremest kind of dying.” So today, with our average life span in much of the world climbing past eighty years, we are already oddities living well beyond our appointed time. When we study aging what we are trying to understand is not so much a natural process as an unnatural one.
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[M]edicine has been slow to confront the very changes that it has been responsible for—or to apply the knowledge we have about how to make old age better. Although the elderly population is growing rapidly, the number of certified geriatricians the medical profession has put in practice has actually fallen in the United States by 25 percent between 1996 and 2010. Applications to training programs in adult primary care medicine have plummeted, while fields like plastic surgery and radiology receive applications in record numbers. Partly, this has to do with money—incomes in geriatrics and adult primary care are among the lowest in medicine. And partly, whether we admit it or not, a lot of doctors don’t like taking care of the elderly.
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What geriatricians do—bolster our resilience in old age, our capacity to weather what comes—is both difficult and unappealingly limited. It requires attention to the body and its alterations. It requires vigilance over nutrition, medications, and living situations. And it requires each of us to contemplate the unfixables in our life, the decline we will unavoidably face, in order to make the small changes necessary to reshape it. When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not.
From Chapter 3: Dependence
For most of our species’ existence, people were fundamentally on their own with the sufferings of their body. They depended on nature and chance and the ministry of family and religion. Medicine was just another a tool you could try, no different from a healing ritual or a family remedy and no more effective. But as medicine became more powerful, the modern hospital brought a different idea. Here was a place where you could go saying, “Cure me.” You checked in and gave over every part of your life to doctors and nurses: what you wore, what you ate, what went into the different parts of your body and when. It wasn’t always pleasant, but, for a rapidly expanding range of problems, it produced unprecedented results. Hospitals learned how to eliminate infections, remove cancerous tumors, reconstruct shattered bones. They could fix hernias and heart valves and hemorrhaging stomach ulcers. They became the normal place for people to go with their bodily troubles, including the elderly.
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In almost no [nursing home] does anyone sit down with you and try to figure out what living a life really means to you under the circumstances, let alone help you make a home where that life becomes possible.
This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.
From Chapter 4: Assistance
Your chances of avoiding the nursing home are directly related to the number of children you have, and, according to what little research has been done, having at least one daughter seems to be crucial to the amount of help you will receive.
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On Stanford psychologist Laura Carstensen‘s socioemotional selectivity theory:
[H]ow we seek to spend our time may depend on how much time we perceive ourselves to have. When you are young and healthy, you believe you will live forever. You do not worry about losing any of your capabilities. People tell you “the world is your oyster,” “the sky is the limit,” and so on. And you are willing to delay gratification—to invest years, for example, in gaining skills and resources for a brighter future. You seek to plug into bigger streams of knowledge and information. You widen your networks of friends and connections, instead of hanging out with your mother. When horizons are measured in decades, which might as well be infinity to human beings, you most desire all that stuff at the top of Maslow’s pyramid—achievement, creativity, and other attributes of “self-actualization.” But as your horizons contract—when you see the future ahead of you as finite and uncertain—your focus shifts to the here and now, to everyday pleasures and the people closest to you.
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Assisted living most often became a mere layover on the way from independent living to a nursing home. It became part of the now widespread idea of a “continuum of care,” which sounds perfectly nice and logical but manages to perpetuate conditions that treat the elderly like preschool children. Concern about safety and lawsuits increasingly limited what people could have in their assisted living apartments, mandated what activities they were expected to participate in, and defined ever more stringent move-out conditions that would trigger “discharge” to a nursing facility. The language of medicine, with its priorities of safety and survival, was taking over, again. [Keren] Wilson pointed out angrily that even children are permitted to take more risks than the elderly. They at least get to have swings and jungle gyms.
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A colleague once told her, Wilson said, “We want autonomy for ourselves and safety for those we love.” That remains the main problem and paradox for the frail. “Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self. … It’s the rare child who is able to think, ‘Is this place what Mom would want or like or need?’ It’s more like they’re seeing it through their own lens.” The child asks, “Is this a place I would be comfortable leaving Mom?”
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In the absence of … a vast extended family constantly on hand to let [them] make [their] own choices—our elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.
From Chapter 5: A Better Life
Consider the fact that we care deeply about what happens to the world after we die. If self-interest were the primary source of meaning in life, then it wouldn’t matter to people if an hour after their death everyone they know were to be wiped from the face of the earth. Yet it matters greatly to most people. We feel that such an occurrence would make our lives meaningless.
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.
C.f. sections 2 and 3 of George Oppen’s “The Image of the Engine”
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The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days. For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns. It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.
That experiment has failed.
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Our lives are inherently dependent on others and subject to forces and circumstances well beyond our control. Having more freedom seems better than having less. But to what end? The amount of freedom you have in your life is not the measure of the worth of your life. Just as safety is an empty and even self-defeating goal to live for, so ultimately is autonomy…
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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The terror of sickness and old age is not merely the terror of the losses one is forced to endure but also the terror of the isolation. As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world—to make choices and sustain connections to others according to their own priorities. In modern society, we have come to assume that debility and dependence rule out such autonomy. What I learned from Lou—and from Ruth Barrett, Anne Braveman, Rita Kahn, and lots of others—was that it is very much possible.
From Chapter 6: Letting Go
Sarah Creed explains the fundamental values of hospice care:
The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—much as nursing home reformers deploy staff to help people with severe disabilities. In terminal illness that means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out with family once in a while—not on whether Cox’s life would be longer or shorter.
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A study led by the sociologist Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive and then followed the patients. Sixty-three percent of doctors overestimated their patient’s survival time. Just 17 percent underestimated it. The average estimate was 530 percent too high. And the better the doctors knew their patients, the more likely they were to err.
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When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Fix Something. Is there any way out of this?
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Two-thirds of the terminal cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did have discussions were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive care unit. Most of them enrolled in hospice. They suffered less, were physically more capable, and were better able, for a longer period, to interact with others. In addition, six months after these patients died, their family members were markedly less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish. … [T]hose who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.
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Our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and escape a warehoused oblivion that few really want.
From Chapter 7: Hard Conversations
This business of deliberating on your options—of figuring out your priorities and working with a doctor to match your treatment to them—was exhausting and complicated, particularly when you didn’t have an expert ready to help you parse the unknowns and ambiguities. The pressure remains all in one direction, toward doing more, because the only mistake clinicians seem to fear is doing too little. Most have no appreciation that equally terrible mistakes are possible in the other direction—that doing too much could be no less devastating to a person’s life.
From Chapter 8: Courage
At least two kinds of courage are required in aging and sickness. The first 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. Such courage is difficult enough. We have many reasons to shrink from it. But even more daunting is the second kind of courage—the courage to act on the truth we find. The problem is that the wise course is so frequently unclear. For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen, it is hard to know what to do. But the challenge, I’ve come to see, is more fundamental than that. One has to decide whether one’s fears or one’s hopes are what should matter most.
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Studies in numerous settings have confirmed the Peak-End rule and our neglect of duration of suffering. Research has also shown that the phenomenon applies just as readily to the way people rate pleasurable experiences. Everyone knows the experience of watching sports when a team, having performed beautifully for nearly the entire game, blows it in the end. We feel that the ending ruins the whole experience. Yet there’s a contradiction at the root of that judgment. The experiencing self had whole hours of pleasure and just a moment of displeasure, but the remembering self sees no pleasure at all. … [W]e also recognize that the experiencing self should not be ignored. The peak and the ending are not the only things that count. In favoring the moment of intense joy over steady happiness, the remembering self is hardly always wise.
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I am leery of suggesting the idea that endings are controllable. No one ever really has control. Physics and biology and accident ultimately have their way in our lives. But the point is that we are not helpless either. Courage is the strength to recognize both realities. We have room to act, to shape our stories, though as time goes on it is within narrower and narrower confines. A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.
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We stop the healthy from committing suicide because we recognize that their psychic suffering is often temporary. We believe that, with help, the remembering self will later see matters differently than the experiencing self—and indeed only a minority of people saved from suicide make a repeated attempt; the vast majority eventually report being glad to be alive. But for the terminally ill who face suffering that we know will increase, only the stonehearted can be unsympathetic. … Given the opportunity, I would support laws to provide these kinds of prescriptions [fatal doses of drugs for the terminally ill]. About half don’t even use their prescription. They are reassured just to know they have this control if they need it. But we damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well.
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Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms. This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.
From the Epilogue
Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. … If to be human is to be limited, then the role of caring professions and institutions—from surgeons to nursing homes—ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.
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As an adult watching [my father] in his final years, I also saw how to come to terms with limits that couldn’t simply be wished away. When to shift from pushing against limits to making the best of them is not often readily apparent. But it is clear that there are times when the cost of pushing exceeds its value. Helping my father through the struggle to define that moment was simultaneously among the most painful and most privileged experiences of my life.
Part of the way my father handled the limits he faced was by looking at them without illusion. Though his circumstances sometimes got him down, he never pretended they were better than they were. He always understood that life is short and one’s place in the world is small. But he also saw himself as a link in a chain of history. Floating on that swollen river, I could not help sensing the hands of the many generations connected across time. In bringing us there, my father had helped us see that he was part of a story going back thousands of years—and so were we.
Featured image by Fylkesarkivet i Sogn og Fjordane