Being Mortal 9.2分
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Paranoia

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.

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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 choices at all. We fall back on the default, and the default is: Do Something. Fix Something.

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This is called a "breakpoint discussion", a series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value--being with family or traveling or enjoying chocolate ice cream. Few people have these conversations, and there is good reason for anyone to dread them. They can unleash difficult emotions. People can become angry or overwhelmed. Handled poorly, the conversations can cost a person's trust. Handled well, thy can take real time.

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The issue arises from a still unresolved argument about what the function of medicine really is--what, in other words, we should and should not be paying for doctors to do.

The simple view is that medicine exists to fight death and disease, and hat is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don't want a general who fights to the point of total annihilation. You don't want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can't, someone who understands that the damage is greatest if all you do is battle to the bitter end.

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A third type of doctor-patient relationship is described, which is called "interpretive". Here the doctor's role is to help patients determine what they want. Interpretive doctors ask, "what is most important to you? What are your worries?" Then, when they know your answers, they tell you about the red pill and the blue pill and which one would most help you achieve your priorities.

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One of the beauties of the old system was that it made these decisions simple. You took the most aggressive treatment available. It wasn't a decision at all, really, but a default setting. 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.

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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 shot of matter most.

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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 judgement afterward to two single points in time, the worst moment and the last one. The remembering self seems to stick to the Peak-End rule even when the ending is an anomaly.

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I'm 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 there 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 life.

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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.

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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 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 he risks and sacrifices thy entail, are justified only if they serve the larger aims of a person's life. When we forgot that, the suffering we inflict can be barbaric. When we remember it, the good we do can be breathtaking.

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When I was a child, the lessons my father taught me had been about perseverance: never to accept limitations that stood in my way. As an adult watching him 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.

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