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Atul Gawande

Atul Gawande Books

Surgeon

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“I talked wih her about the help he was going to need. He was going to need nursing care, a hospital bed, an air mattress to prevent bedsores, physical therapy to prevent his muscles from stiffening. Should we look at nursing homes? She was aghast. Absolutely not, she said. She'd had friends in the ones around town, and they'd appalled her. She could not imagine putting him in any of them. We'd come to the same place I have seen scores of patients come to, the same place I'd seen Alice Hobson come to. We were up against the unfixable. But we were desperate to believe that we weren't up against the unmanageable. Yet short of calling 911 the next time trouble hit, and letting the logic and.momentum of medical solutions take over, what were we to do?”

“We believe that having a longer duration of pain is worse than a shorter duration and that having a greater average level of pain is worse than having a lower average level. But this wasn’t what the patients reported at all. Their final ratings largely ignored the duration of pain. Instead, the ratings were predicted by what Kahneman termed the “Peak-End rule”: an average of the pain experienced at just two moments - the single worst moment of the procedure and the very end.”

“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.”

“I think of Gould and his essay every time I have a patient with a terminal illness. 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.”

“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?”

“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.”

“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?”

“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. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.” People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.”

“A study led by the Harvard researcher 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 per cent of doctors overestimated survival time. Just seventeen per cent underestimated it. The average estimate was five hundred and thirty per cent too high. And, the better the doctors knew their patients, the more likely they were to err.”

“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.”

“We are all plagued by failures - by missed subtleties, overlooked knowledge, and outright errors. For the most part, we have imagined that little can be done beyond working harder and harder to catch the problems clean up after them. We are not in the habit of thinking the way the army pilots did as they looked upon their shiny new Model 299 bomber — a machine so complex no one was sure human beings could try it.”

“All involve risk, uncertainty, and complexity — and therefore steps that are worth committing to a checklist and testing in routine care. Good checklists could become as important as doctors and nurses as good stethoscopes (which, unlike checklist, have never been proved to make a difference in patient care). The hard question — still unanswered — is whether medical culture can seize the opportunity.”

“If we shift as we age toward appreciating everyday pleasures and relationships rather than toward achieving, having, and getting, and if we find this more fulfilling, then why do we take so long to do it? Why do we wait until we’re old? The common view was that these lessons are hard to learn. Living is a kind of skill. The calm and wisdom of old age are achieved over time.”

“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 sharing 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.”

“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?”

“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?”

“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.”

“We have no illusions about this. ... When an attending physician brings a family member in for surgery, people at the hospital think hard about how much to let the trainees participate. ... Conversely, the ward services and clinics where residents have the most responsibility are populated by the poor, the uninsured, the drunk, and the demented.”

“[We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. 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?”

“For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns. It's been and experiment in social engineering, putting our fate in the hands of people valued more for their technical prowess than for their understanding of human needs. That experiment has failed... we seek a life of worth and purpose, yet are routinely denied the conditions that might make it possible, there is no other way to see what modern society has done.”

“The simple view is that medicine exists to fight death and disease, and that 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.”

“There is a saying about surgeons, meant as a reproof: "Sometimes wrong; never in doubt." But this seemed to me their strength. Each day surgeons are faced with uncertainties. Information is inadequate; the science is ambiguous; one's knowledge and abilities are never perfect. Even with the simplest operation, it cannot be taken for granted that a patient will come through better off - or even alive. Standing at the table my first time, I wondered how the surgeon knew that he would do this patient good, that all the steps would go as planned, that the bleeding would be controlled and infection would not take hold and organs would not be injured. He didn't, of course. But still he cut.”

“Having great components is not enough. We are obsessed in medicine with having great components, the best drugs, the best devices, the best specialists, but pay little attention to how to make them fit together well. Berwick notes how wrong-headed this approach is. Anyone who understands systems will know immediately that optimizing parts is not a good route to system excellence, he says. He gives the example of a famous thought experiment, of trying to build the world’s greatest car by assembling the world’s greatest car parts. We connect the engine of a Ferrari, the breaks of a Porsche, the suspension of BMW, the body of a Volvo. What we get, of course, is nothing close to a great car. We get a pile of very expensive junk.”

“You would think that this would be whether the entrepreneur’s idea is actually a good one. But finding a good idea is apparently not all that hard. Finding an entrepreneur who can execute a good idea is a different matter entirely. One needs a person who can take an idea from proposal to reality, work the long hours, build a team, handle the pressures and setbacks, manage technical and people problems alike, and stick with the effort for years on end without getting distracted or going insane. Such people are rare and extremely hard to spot.”

“For all the differences among the eight hospitals, I was nonetheless surprised by how readily one can feel at home in an operating room, wherever it might be. Once a case was underway, it was still surgery. You still had a human being on the table with his hopes and his fears, and his body opened up to you, trusting you to do right by him. And you still had a group of people striving to work together with enough skill and commitment to warrant that trust.”

“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.”

“In the end, people don't view their life as merely the average of all 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 maybe empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves.”