Being Mortal, Atul Gawande

The one time I remember discussing mortality was during an hour we spent on The Death of Ivan Ilyich, Tolstoy’s classic novella. It was in a weekly seminar called Patient-Doctor—part of the school’s effort to make us more rounded and humane physicians. (Location 46)

Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. (Location 132)

Leonid Gavrilov, a researcher at the University of Chicago, argues that human beings fail the way all complex systems fail: randomly and gradually. (Location 430)

The job of any doctor, Bludau later told me, is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world. (Location 539)

The body’s decline creeps like a vine. Day to day, the changes can be imperceptible. You adapt. Then something happens that finally makes it clear that things are no longer the same. (Location 556)

When I saw him three months later, he was still despondent. “I feel as if a part of my body is missing. I feel as if I have been dismembered,” he told me. His voice cracked and his eyes were rimmed red. He had one great solace, however: that she hadn’t suffered, that she’d got to spend her last few weeks in peace at home in the warmth of their long love, instead of up on a nursing floor, a lost and disoriented patient. (Location 764)

Prosperity has enabled even the poor to expect nursing homes with square meals, professional health services, physical therapy, and bingo. They’ve eased debility and old age for millions and made proper care and safety a norm to an extent that the inmates of poorhouses could not imagine. Yet still, most consider modern old age homes frightening, desolate, even odious places to spend the last phase of one’s life. We need and desire something more. (Location 846)

We didn’t look around and say to ourselves, “You know, there’s this phase of people’s lives in which they can’t really cope on their own, and we ought to find a way to make it manageable.” No, instead we said, “This looks like a medical problem. Let’s put these people in the hospital. Maybe the doctors can figure something out.” The modern nursing home developed from there, more or less by accident. (Location 891)

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. (Location 998)

1983, their new “living center with assistance” for the elderly—named Park Place—opened in Portland. (Location 1162)

Is someone who refuses regular housekeeping, smokes cigarettes, and eats candies that cause a diabetic crisis requiring a trip to the hospital someone who is a victim of neglect or an archetype of freedom? (Location 1183)

the state required Wilson and her husband to track the health, cognitive capabilities, physical function, and life satisfaction of the tenants. ... Their satisfaction with their lives increased, and at the same time their health was maintained. Their physical and cognitive functioning actually improved. Incidence of major depression fell. And the cost for those on government support was 20 percent lower than it would have been in a nursing home. The program proved an unmitigated success. (Location 1189)

our driving motivations in life, instead of remaining constant, change hugely over time and in ways that don’t quite fit Maslow’s classic hierarchy. (Location 1204)

Studies find that as people grow older they interact with fewer people and concentrate more on spending time with family and established friends. They focus on being rather than doing and on the present more than the future. (Location 1209)

how we seek to spend our time may depend on how much time we perceive ourselves to have. (Location 1255)

There, in the hollows where she grew up, Wilson is still trying to work out how ordinary people can age without having to choose between neglect and institutionalization. It remains among the most uncomfortable questions we face. (Location 1331)

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. (Location 1364)

Most frustrating and important, Wilson said, assisted living isn’t really built for the sake of older people so much as for the sake of their children. The children usually make the decision about where the elderly live, and you can see it in the way that places sell themselves. (Location 1366)

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.” (Location 1374)

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. (Location 1481)

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.” (Location 1586)

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. (Location 1605)

What more is it that we need in order to feel that life is worthwhile? The answer, he believed, is that we all seek a cause beyond ourselves. This was, to him, an intrinsic human need. (Location 1616)

The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. (Location 1632)

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. (Location 1636)

As our time winds down, we all seek comfort in simple pleasures—companionship, everyday routines, the taste of good food, the warmth of sunlight on our faces. We become less interested in the rewards of achieving and accumulating, and more interested in the rewards of simply being. Yet while we may feel less ambitious, we also become concerned for our legacy. And we have a deep need to identify purposes outside ourselves that make living feel meaningful and worthwhile. (Location 1637)

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.

Dworkin wrote in his remarkable 1986 essay on the subject, “The value of autonomy… lies in the scheme of responsibility it creates: autonomy makes each of us responsible for shaping his own life according to some coherent and distinctive sense of character, conviction, and interest. It allows us to lead our own lives rather than be led along them, so that each of us can be, to the extent such a scheme of rights can make this possible, what he has made himself.” (Location 1815)

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. (Location 1821)

The difference between standard medical care and hospice is not the difference between treating and doing nothing. 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. (Location 2061)

In theory, a person should make decisions about life and death matters analytically, on the basis of the facts. But the facts were shot through with holes and uncertainties. (Location 2531)

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. (Location 2598)

In my career, I have always been most comfortable being Dr. Informative. (My generation of physicians has mostly steered away from being Dr. Knows-Best.) (Location 2604)

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. (Location 2658)

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. So I asked. (Location 2669)

I begin to recognize how understanding the finitude of one’s time could be a gift. (Location 2696)

He absorbed himself so totally that he changed his e-mail signature from “Atmaram Gawande, M.D.” to “Atmaram Gawande, D.G.” Somehow, instead of holding on to the lifelong identity that was slipping away from him, he managed to redefine (Location 2713)

The discussion became difficult for me or my parents to follow, despite all three of us being doctors. There were too many options, too many risks and benefits to consider with every possible path, and the conversation never got to what he cared about, which was finding a path with the best chance of maintaining a life he’d find worthwhile. (Location 2823)

Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength. (Location 2995)

One has to decide whether one’s fears or one’s hopes are what should matter most. (Location 3000)

I realized, with shame, that I’d reverted to being Dr. Informative—here are the facts and figures; what do you want to do? So I stepped back and asked the questions I’d asked my father: What were her biggest fears and concerns? What goals were most important to her? What tradeoffs was she willing to make, and what ones was she not? (Location 3024)

People seemed to have two different selves—an experiencing self who endures every moment equally and a remembering self who gives almost all the weight of judgment afterward to two single points in time, the worst moment and the last one. (Location 3069)

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. (Location 3083)

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. (Location 3145)

Our ultimate goal, after all, is not a good death but a good life to the very end. (Location 3169)