Being Mortal

Being Mortal

Illness, Medicine and What Matters in the End

Atul Gawande

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. Your competence gives you a secure sense of identity. For a clinician, therefore, nothing is more threatening to who you think you are than a patient with a problem you cannot solve.

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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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In the past, surviving into old age was uncommon, and those who did survive served a special purpose as guardians of tradition, knowledge, and history. They tended to maintain their status and authority as heads of the household until death.

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By the age of sixty, people in an industrialized country like the United States have lost, on average, a third of their teeth. After eighty-five, almost 40 percent have no teeth at all.

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Around age forty, one begins to lose muscle mass and power. By age eighty, one has lost between a quarter and a half of one’s muscle weight.

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Even our brains shrink: at 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 like my grandfather are so much more prone to cerebral bleeding after a blow to the head—the brain actually rattles around inside.

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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.”

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Engineers therefore design these machines with multiple layers of redundancy: with backup systems, and backup systems for the backup systems. The backups may not be as efficient as the first-line components, but they allow the machine to keep going even as damage accumulates. Gavrilov argues that, within the parameters established by our genes, that’s exactly how human beings appear to work. We have an extra kidney, an extra lung, an extra gonad, extra teeth. The DNA in our cells is frequently damaged under routine conditions, but our cells have a number of DNA repair systems. If a key gene is permanently damaged, there are usually extra copies of the gene nearby.

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Hair grows gray, for instance, simply because we run out of the pigment cells that give hair its color. The natural life cycle of the scalp’s pigment cells is just a few years. We rely on stem cells under the surface to migrate in and replace them. Gradually, however, the stem-cell reservoir is used up. By the age of fifty, as a result, half of the average person’s hairs have gone gray.

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Each year, about 350,000 Americans fall and break a hip. Of those, 40 percent end up in a nursing home, and 20 percent are never able to walk again. The three primary risk factors for falling are poor balance, taking more than four prescription medications, and muscle weakness. Elderly people without these risk factors have a 12 percent chance of falling in a year. Those with all three risk factors have almost a 100 percent chance.

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researchers randomly assigned half of them to see a team of geriatric nurses and doctors—a team dedicated to the art and science of managing old age. The others were asked to see their usual physician, who was notified of their high-risk status. Within eighteen months, 10 percent of the patients in both groups had died. But the patients who had seen a geriatrics team were a quarter less likely to become disabled and half as likely to develop depression. They were 40 percent less likely to require home health services.

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This was not the average retirement community, but even in an average one rent runs $ 32,000 a year. Entry fees are typically $ 60,000 to $ 120,000 on top of that. Meanwhile, the median income of people eighty and older is only about $ 15,000. More than half of the elderly living in long-term-care facilities run through their entire savings and have to go on government assistance—welfare—in order to afford it. Ultimately, the average American spends a year or more of old age disabled and living in a nursing home (at more than five times the yearly cost of independent living),

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“As you get older, the lordosis of your spine tips your head forward,” he said to me. “So when you look straight ahead it’s like looking up at the ceiling for anyone else. Try to swallow while looking up: you’ll choke once in a while. The problem is common in the elderly. Listen.” I realized that I could hear someone in the dining room choking on his food every minute or so. Felix turned to Bella. “You have to eat looking down, sweetie,” he said.

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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.

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As hospitals sprang up, they became a comparatively more attractive place to put the infirm. That was finally what brought the poorhouses to empty out. One by one through the 1950s, the poorhouses closed, responsibility for those who’d been classified as elderly “paupers” was transferred to departments of welfare, and the sick and disabled were put in hospitals. But hospitals couldn’t solve the debilities of chronic illness and advancing age, and they began to fill up with people who had nowhere to go. The hospitals lobbied the government for help, and in 1954 lawmakers provided funding to enable them to build separate custodial units for patients needing an extended period of “recovery.” That was the beginning of the modern nursing home. They were never created to help people facing dependency in old age. They were created to clear out hospital beds—which is why they were called “nursing” homes.

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a hypothesis: how 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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First, to genuinely help people with living “is harder to do than to talk about” and it’s difficult to make caregivers think about what it really entails. She gave the example of helping a person dress. Ideally, you let people do what they can themselves, thus maintaining their capabilities and sense of independence. But, she said, “Dressing somebody is easier than letting them dress themselves. It takes less time. It’s less aggravation.” So unless supporting people’s capabilities is made a priority, the staff ends up dressing people like they’re rag dolls. Gradually, that’s how everything begins to go. The tasks come to matter more than the people.

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we have no good metrics for a place’s success in assisting people to live. By contrast, we have very precise ratings for health and safety. So you can guess what gets the attention from the people who run places for the elderly: whether Dad loses weight, skips his medications, or has a fall, not whether he’s lonely.

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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.”

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He was a voracious reader and autodidact, the kind of a boy who would teach himself trigonometry so he could build a boat (which he did). He just didn’t care about doing the work his teachers asked for, and he didn’t hesitate to tell them so. Today, we’d diagnose him as having Oppositional Defiant Disorder.

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The inhabitants of Chase Memorial Nursing Home now included one hundred parakeets, four dogs, two cats, plus a colony of rabbits and a flock of laying hens. There were also hundreds of indoor plants and a thriving vegetable and flower garden. The home had on-site child care for the staff and a new after-school program. Researchers studied the effects of this program over two years, comparing a variety of measures for Chase’s residents with those of residents at another nursing home nearby. Their study found that the number of prescriptions required per resident fell to half that of the control nursing home. Psychotropic drugs for agitation, like Haldol, decreased in particular. The total drug costs fell to just 38 percent of the comparison facility. Deaths fell 15 percent. The study couldn’t say why. But Thomas thought he could. “I believe that the difference in death rates can be traced to the fundamental human need for a reason to live.” And other research was consistent with this conclusion. In the early 1970s, the psychologists Judith Rodin and Ellen Langer performed an experiment in which they got a Connecticut nursing home to give each of its residents a plant. Half of them were assigned the job of watering their plant and attended a lecture on the benefits of taking on responsibilities in their lives. The other half had their plant watered for them and attended a lecture on how the staff was responsible for their well-being. After a year and a half, the group encouraged to take more responsibility—even for such a small thing as a plant—proved more active and alert and appeared to live longer.

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The birds were drawing him out. 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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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. If safety and protection were all we sought in life, perhaps we could conclude differently. But because we seek a life of worth and purpose, and yet are routinely denied the conditions that might make it possible, there is no other way to see what modern society has done.

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The soaring cost of health care has become the greatest threat to the long-term solvency of most advanced nations, and the incurable account for a lot of it. In the United States, 25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life, and most of that money goes for care in their last couple of months that is of little apparent benefit. The United States is often thought to be unusual in this regard, but it doesn’t appear to be. Data from elsewhere are more limited, but where they are available—for instance, from countries like the Netherlands and Switzerland—the results are similar. Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. A 2011 study, for instance, found that medical spending for a breast cancer patient in the first year of diagnosis averaged an estimated $ 28,000, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. Costs fell after that to about $ 2,000 a year. For a patient whose cancer proves fatal, though, the cost curve is U-shaped, rising toward the end—to an average of $ 94,000 during the last year of life with a metastatic breast cancer. Our medical system is excellent at trying to stave off death with $ 12,000-a-month chemotherapy, $ 4,000-a-day intensive care, $ 7,000-an-hour surgery. But, ultimately, death comes, and few are good at knowing when to stop.

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In 2008, the national Coping with Cancer project published a study showing that terminally ill Cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression.

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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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There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win. Hope is not a plan, but hope is our plan.

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The researchers randomly assigned 151 patients with stage IV lung cancer, like Sara’s, to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those 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. Patients entering hospice have had no less surprising results. Like many other people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But multiple studies find otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or end-stage congestive heart failure. For the patients with breast cancer, prostate cancer, or colon cancer, the researchers found no difference in survival time

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The words you use matter. According to palliative specialists, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like you’re distancing yourself. You should say, “I wish things were different.” You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”

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the authors warning that doctors would sometimes have to go farther than just interpreting people’s wishes in order to serve their needs adequately. Wants are fickle. And everyone has what philosophers call “second-order desires”—desires about our desires. We may wish, for instance, to be less impulsive, more healthy, less controlled by primitive desires like fear or hunger, more faithful to larger goals. Doctors who listen to only the momentary, first-order desires may not be serving their patients’ real wishes, after all. We often appreciate clinicians who push us when we make shortsighted choices, such as skipping our medications or not getting enough exercise. And we often adjust to changes we initially fear. At some point, therefore, it becomes not only right but also necessary for a doctor to deliberate with people on their larger goals, to even challenge them to rethink ill-considered priorities and beliefs.

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Bob Arnold, a palliative care physician I’d met from the University of Pittsburgh, had explained to me that the mistake clinicians make in these situations is that they see their task as just supplying cognitive information—hard, cold facts and descriptions. They want to be Dr. Informative. But it’s the meaning behind the information that people are looking for more than the facts. The best way to convey meaning is to tell people what the information means to you yourself, he said. And he gave me three words to use to do that. “I am worried,” I told Douglass. The tumor was still there, I explained, and I was worried the blockage was likely to come back. They were such simple words, but it wasn’t hard to sense how much they communicated. I had given her the facts. But by including the fact that I was worried, I’d not only told her about the seriousness of the situation, I’d told her that I was on her side—I was pulling for her. The words also told her that, although I feared something serious, there remained uncertainties—possibilities for hope within the parameters nature had imposed.

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Arnold had also recommended a strategy palliative care physicians use when they have to talk about bad news with people—they “ask, tell, ask.” They ask what you want to hear, then they tell you, and then they ask what you understood.

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In the end, people don’t view their life as merely the average of all of its moments—which, after all, is mostly nothing much plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. Measurements of people’s minute-by-minute levels of pleasure and pain miss this fundamental aspect of human existence. A seemingly happy life may be empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves. Unlike your experiencing self—which is absorbed in the moment—your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works out as a whole. That is profoundly affected by how things ultimately turn out. Why would a football fan let a few flubbed minutes at the end of the game ruin three hours of bliss? Because a football game is a story. And in stories, endings matter. Yet we 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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“An inconsistency is built into the design of our minds,” Kahneman observes. “We have strong preferences about the duration of our experiences of pain and pleasure. We want pain to be brief and pleasure to last. But our memory … has evolved to represent the most intense moment of an episode of pain or pleasure (the peak) and the feelings when the episode was at its end. A memory that neglects duration will not serve our preference for long pleasure and short pains.” When our time is limited and we are uncertain about how best to serve our priorities, we are forced to deal with the fact that both the experiencing self and the remembering self matter. We do not want to endure long pain and short pleasure. Yet certain pleasures can make enduring suffering worthwhile. The peaks are important, and so is the ending.

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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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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.

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Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?

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