Being Mortal: Medicine and What Matters in the End by Atul Gawande

(New York: Metropolitan Books, 2014), 300

I read this a few years ago, but was glad to revisit it for our family book club on 2025-03-22-Sat. His thesis is that as medicine has gotten better as a science as making people live longer, the problems to be solve have shifted from saving life to helping support meaningful life in old age. "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."

I appreciate his emphasis on recognizing the reality of our mortality and having the hard questions with those we love, which he enumerates as:

  • 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?
  • Also, think ahead: If you were the one who had an advanced and incurable condition, what would you want your doctors to do?

Overall I found this to be an important and thought-provoking books, and it prompted a good discussion. Where it falls short is in looking at death from a purely scientific secular perspective when suffering and death need to be faced in light of eternity (cf A Time to Die).

I found this to be a helpful resource: Diocese of Cincinnati: Catholic Advanced Health Care Directive (PDF)

I desire that all ordinary medical interventions (those that are useful and offer a reasonable
hope of benefit without causing excessive burdens) be used in my treatment and care.
Unless there is a particular reason for doing otherwise, I wish to forgo all extraordinary
means (those that are futile or that are likely to cause burdens that are disproportionate to
any expected benefits). In all circumstances, I oppose any act or omission that of itself or
by intention will cause my death, even for the purpose of eliminating suffering. I direct that all decisions regarding my medical treatment and care be made in accord with Catholic
moral teachings as set forth in such documents as the following:
‣ Declaration on Euthanasia (Congregation for the Doctrine of the Faith, 1980);
‣ Patients in a “Permanent” Vegetative State (Pope John Paul II, March 20, 2004);
‣ United States Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Services, 5th edition, 2009 or edition current at the time decisions are being made.
‣ Responses to Certain Questions Concerning Artificial Nutrition and Hydration (Congregation for the Doctrine of the Faith, 2007).

Notes


Contents


Introduction

Summary: Medical school doesn't teach you about mortality.

  • I learned about a lot of things in medical school, but mortality wasn’t one of them. (1)
  • The one time I remember discussing mortality was during an hour we spent on The Death of Ivan Ilych, Tolstoy’s classic novella. (1)
  • But death is not a subject that his doctors, friends, or family can countenance. That is what causes him his most profound pain. (2)
  • Modern scientific capability has profoundly altered the course of human life. People live longer and better than at any other time in history. But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it. (6)
  • Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. (8)
  • The late surgeon Sherwin Nuland, in his classic book How We Die, lamented, “The necessity of nature’s final victory was expected and accepted in generations before our own. Doctors were far more willing to recognize the signs of defeat and far less arrogant about denying them.” (8)
  • If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering. (8)
  • This is a book about the modern experience of mortality—about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong. (9)
  • 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. (9)
  • Some will be alarmed by the prospect of a doctor’s writing about the inevitability of decline and death. For many, such talk, however carefully framed, raises the specter of a society readying itself to sacrifice its sick and aged. But what if the sick and aged are already being sacrificed—victims of our refusal to accept the inexorability of our life cycle? (9)

Chapter 1: The Independent Self

Summary: What is "independence"?

  • Health professionals have a formal classification system for the level of function a person has (15):
    • “Activities of Daily Living”: use the toilet, eat, dress, bathe, groom, get out of bed, get out of a chair, and walk
    • “Independent Activities of Daily Living”: 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
  • 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. (17)
  • New technology also creates new occupations and requires new expertise, which further undermines the value of long experience and seasoned judgment. (18)
  • We think, nostalgically, that we want the kind of old age my grandfather had. But the reason we do not have it is that, in the end, we do not actually want it....Whenever the elderly have had the financial means, they have chosen what social scientists have called “intimacy at a distance.” (21)
  • 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. (22)
  • Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible...If independence is what we live for, what do we do when it can no longer be sustained? (23)

Chapter 2: Things Fall Apart

Summary: We live longer, and decline with a long, slow fade.

  • The "profiles of mortality" have shifted from a sudden death to a long, slow fade. (25-27)
  • We’re always trotting out some story of a ninety-seven-year-old who runs marathons, as if such cases were not miracles of biological luck but reasonable expectations for all. Then, when our bodies fail to live up to this fantasy, we feel as if we somehow have something to apologize for. (28)
    • The peak output of the heart therefore decreases steadily from the age of thirty. (30)
    • Around age forty, one begins to lose muscle mass and power. (30)
    • Processing speeds start decreasing well before age forty (31)
  • The preponderance of the evidence is against the idea that our life spans are programmed into us. Remember that for 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. (32)
  • 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. (32)
  • Human beings fail the way all complex systems fail: randomly and gradually. (33)
  • We cling to the notion of retirement at sixty-five—a reasonable notion when those over sixty-five were a tiny percentage of the population but increasingly untenable as they approach 20 percent. People are putting aside less in savings for old age now than they have at any time since the Great Depression. (36)
  • The three primary risk factors for falling are poor balance, taking more than four prescription medications, and muscle weakness. (40)
  • 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. (53)

Chapter 3: Dependence

Summary: The history of nursing homes.

  • It is not death that the very old tell me they fear. It is what happens short of death—losing their hearing, their memory, their best friends, their way of life. (55)
  • We rarely pay more than glancing attention to how we will live when we need help until it’s too late to do much about it. (55)
  • “It just isn’t home.” To Alice, Longwood House was a mere facsimile of home. And having a place that genuinely feels like your home can seem as essential to a person as water to a fish. (66)
  • How we replaced the poorhouse with nursing homes is a medical story. (68)
  • Doctors became heroes, and the hospital transformed from a symbol of sickness and despondency to a place of hope and cure. (69)
  • In 1946, Congress passed the Hill-Burton Act, which provided massive amounts of government funds for hospital construction. (69, cf The Fiat Standard?)
  • But pensions hadn’t provided a plan for that final, infirm stage of mortal life. As hospitals sprang up, they became a comparatively more attractive place to put the infirm. (70)
  • 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. (71)
  • When Medicare, America’s health insurance system for the aged and disabled, passed in 1965, the law specified that it would pay only for care in facilities that met basic health and safety standards. The Bureau of Health Insurance invented the concept of “substantial compliance”—if the hospital came “close” to meeting the standards. (71)
  • The sociologist Erving Goffman noted the likeness between prisons and nursing homes half a century ago in his book Asylums. They were, along with military training camps, orphanages, and mental hospitals, “total institutions”—places largely cut off from wider society. “A basic social arrangement in modern society is that the individual tends to sleep, play, and work in different places, with different co-participants, under different authorities, and without an over-all rational plan,” he wrote. By contrast, total institutions break down the barriers separating our spheres of life in specific ways that he enumerated:
    • First, all aspects of life are conducted in the same place and under the same central authority.
    • Second, each phase of the member’s daily activity is carried on in the immediate company of a large batch of others, all of whom are treated alike and required to do the same thing together.
    • Third, all phases of the day’s activities are tightly scheduled, with one activity leading at a prearranged time into the next, the whole sequence of activities being imposed from above by a system of explicit formal rulings and a body of officials.
    • Finally, the various enforced activities are brought together into a single plan purportedly designed to fulfill the official aims of the institution. (73)
  • "This feels like a hospital, not a home" (75)
  • Nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight—important medical goals, to be sure, but they are means, not ends. (75)
  • The things she missed most, she told me, were her friendships, privacy, and a purpose to her days. (75)
  • But it seems we’ve succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible. (75)
  • Nursing home staff like, and approve of, residents who are “fighters” and show “dignity and self-esteem”—until these traits interfere with the staff’s priorities for them. Then they are “feisty.” (76)
  • This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. (76)

Chapter 4: Assistance

Summary: The vision and failures of "assisted living" homes.

  • 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. But our greater longevity has coincided with the increased dependence of families on dual incomes, with results that are painful and unhappy for all involved. (79)
  • Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial. The burdens for today’s caregiver have actually increased from what they would have been a century ago. (85)
  • Keren Brown Wilson invented he idea of "assisted living" with Park Place in Portland in 1983. The key word in her mind was home. Home is the one place where your own priorities hold sway. At home, you decide how you spend your time, how you share your space, and how you manage your possessions. Away from home, you don’t. This loss of freedom was what people dreaded. (89)
  • But here the care providers understood they were entering someone else’s home, and that changed the power relations fundamentally. (91)
  • With “assisted living,” as Wilson’s concept become known, the goal was that no one ever had to feel institutionalized. (91)
  • In 1988, the findings were made public. They revealed that the residents had not in fact traded their health for freedom. Their satisfaction with their lives increased, and at the same time their health was maintained. Their physical and cognitive functioning actually improved. (92)
  • What makes life worth living when we are old and frail and unable to care for ourselves? 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. (93)
  • Stanford psychologist Laura Carstensen: how we seek to spend our time may depend on how much time we perceive ourselves to have: "socioemotional selectivity theory" aka "perspective matters". (97)
  • Assisted living most often became a mere layover on the way from independent living to a nursing home. The idea of assisted living as an alternative to nursing homes had all but died. “I love it when assisted living works,” she said. It’s just that in most places it doesn’t. (103)
  • What bothered Shelley most was how little curiosity the staff members seemed to have about what Lou cared about in his life and what he had been forced to forfeit. They didn’t even recognize their ignorance in this regard. They might have called the service they provided assisted living, but no one seemed to think it was their job to actually assist him with living. (104)
  • So this is the way it unfolds. In the absence of what people like my grandfather could count on—a vast extended family constantly on hand to let him make his 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. (108)

Chapter 5: A Better Life

Summary: Bringing life into nursing homes with plants, animals, and children.

  • In 1991, in the tiny town of New Berlin, in upstate New York, a young physician named Bill Thomas performed an experiment. “I was willing to be rejected. That’s what allows you to be a good salesperson. You have to be willing to be rejected.” (113)
  • His four years at Harvard were the only time he ever lived outside upstate New York. During vacations, he used to bicycle from Boston to Nichols and back—a 330-mile ride in each direction. He liked the self-sufficiency—pitching his tent in random orchards and fields along the road and finding food wherever he could. (114)
  • He was committed to the idea of homesteading—being totally self-reliant. He built his home by hand with friends. He grew most of his own food. He used wind and solar power to generate electricity. He was completely off the grid. He lived by the weather and the seasons. Eventually, he and Jude, a nurse who became his wife, expanded the farm to more than four hundred acres. They had cattle, draft horses, chickens, a root cellar, a sawmill, and a sugarhouse, not to mention five children. (115)
  • The aim, he said, was to attack what he termed the Three Plagues of nursing home existence: boredom, loneliness, and helplessness. To attack the Three Plagues they needed to bring in some life. They’d put green plants in every room. They’d tear up the lawn and create a vegetable and flower garden. And they’d bring in animals. (116)
  • The residents began to wake up and come to life. (122)
  • “I believe that the difference in death rates can be traced to the fundamental human need for a reason to live.” (123)
  • In 1908, a Harvard philosopher named Josiah Royce wrote a book with the title The Philosophy of Loyalty: we all seek a cause beyond ourselves. This was, to him, an intrinsic human need. Royce called this dedication to a cause beyond oneself loyalty. He regarded it as the opposite of individualism. We all require devotion to something more than ourselves for our lives to be endurable. Without it, we have only our desires to guide us, and they are fleeting, capricious, and insatiable. They provide, ultimately, only torment. 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. (127)
  • 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. (128)
  • NewBridge was divided into smaller pods housing no more than sixteen people. Each pod was called a “household” and was meant to function like one. (129)
  • NewBridge shared its grounds with a private school for students in kindergarten through eighth grade, and the two places had become deeply intertwined. (132)
  • Making lives meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does. (137)
  • 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 late, great philosopher Ronald Dworkin recognized that there is a second, more compelling sense of autonomy. Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives. This is the very marrow of being human. (140)
  • He took the control away from the managers and gave it to the frontline caregivers. They were each encouraged to focus on just a few residents and to become more like generalists. They did the cooking, the cleaning, and the helping with whatever need arose. (143)

Chapter 6: Letting Go

Summary: When should doctors try to fix, and when should we let go? An introduction to hospice care and fighting for the long tail.

  • Insight: as people’s capacities wane, whether through age or ill health, making their lives better often requires curbing our purely medical imperatives—resisting the urge to fiddle and fix and control. (149)
  • If you were the one who had an advanced and incurable condition what would you want your doctors to do? (153)
  • 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. (153)
  • Almost all these patients had known, for some time, that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage. (154)
  • People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs. (155)
  • Guides to ars moriendi, the art of dying, were extraordinarily popular; a medieval version published in Latin in 1415 was reprinted in more than a hundred editions across Europe. People believed death should be accepted stoically, without fear or self-pity or hope for anything more than the forgiveness of God. (156)
  • “Is she dying?” one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality and created a new difficulty for mankind: how to die. (157)
  • 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. (160)
  • “A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. (161)
  • The mantra was: live for now. (163)
  • Hospice has tried to offer a new ideal for how we die. Although not everyone has embraced its rituals, those who have are helping to negotiate an ars moriendi for our age. (165)
  • Sixty-three percent of doctors overestimated their patient’s survival time. Just 17 percent underestimated it. The average estimate was 530 percent too high. (167)
  • In 1985, the paleontologist and writer Stephen Jay Gould published an extraordinary essay entitled “The Median Isn’t the Message” (170)
    • Our "Platonic heritage, with its emphasis on clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly."
    • "We view means and medians as hard realities," but "variation itself is nature’s only irreducible essence"—"I knew how to read the data properly and not despair."
    • "I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah—set thine house in order: for thou shalt die, and not live. I would have time to think, to plan, and to fight."
    • "It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light."
    • "The swords of battle are numerous, and none more effective than humor."
  • 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. (171)
  • 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. (174)
  • 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. (177)
  • End of questions (179)
    1. Do you want to be resuscitated if your heart stops?
    2. Do you want aggressive treatments such as intubation and mechanical ventilation?
    3. Do you want antibiotics?
    4. Do you want tube or intravenous feeding if you can’t eat on your own?
  • “A family meeting is a procedure, and it requires no less skill than performing an operation.” One basic mistake is conceptual. To most doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. We focus on laying out the facts and the options. But that’s a mistake, Block said. “A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany. (181)
  • You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them their best chance of achieving it. The words you use matter. (182)
  • Block has a list of questions that she aims to cover with sick patients in the time before decisions have to be made: (182)
    • What do they understand their prognosis to be?
    • What are their concerns about what lies ahead?
    • What kinds of trade-offs are they willing to make?
    • How do they want to spend their time if their health worsens, who do they want to make decisions if they can’t?
  • “‘I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.’ (183)
  • Swedish doctors call it 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— (185)
  • No patient wants to cause his family pain. According to Block, about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want. (186)
  • The issue isn’t merely a matter of financing. It 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 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. (187)
  • There is no prettifying death. (189)

Chapter 7: Hard Conversations

Summary: Have the hard conversations with loved ones to understand their wishes. Work with your doctors in a "shared decision making" model.

  • Scholars have posited three stages of medical development that countries go through, paralleling their economic development:
    • In the first stage, when a country is in extreme poverty, most deaths occur in the home because people don’t have access to professional diagnosis and treatment.
    • In the second stage, when a country’s economy develops and its people transition to higher income levels, the greater resources make medical capabilities more widely available. People turn to health care systems when they are ill. At the end of life, they often die in the hospital instead of the home. In the third stage, as a country’s income climbs to the highest levels, people have the means to become concerned about the quality of their lives, even in sickness, and deaths at home actually rise again. (192)
  • 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. (197)
  • Patients tend to be optimists, even if that makes them prefer doctors who are more likely to be wrong. (198)
  • Doctor-patient relationships: Dr. Knows Best, Just the Facts, or "interpretive" or "shared decision making": help patients determine what they want. (201)
  • This is what it means to have autonomy—you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them. (210)
  • It was time, I realized, for our own hard conversation. (211)
    • I asked him what his understanding was of what was happening to him.
    • What were his fears if that should happen, I asked?
    • What were his goals if his condition worsened, I asked?
    • I asked him what trade-offs he was willing to make and not willing to make to try to stop what was happening to him.
  • Those questions were among the hardest I’d asked in my life. But what we felt afterward was relief. We felt clarity. (213)
  • The choices don't stop, however. Life is choices, and they are relentless. No sooner have you made one choice than another is upon you. (215)
  • The discussion became difficult for me or my parents to follow, despite all three of us being doctors...Between the three of us we had 120 years of experience in medicine, but it seemed a mystery. It turned out to be an education. (223)
  • 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. (220)
  • “What are we going to do to take care of you, Dad?” (222)

Chapter 8: Courage

Summary: Courage...and advocacy of Euthanasia?

  • Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength. 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. The second kind of courage—the courage to act on the truth we find. (232)
  • One has to decide whether one’s fears or one’s hopes are what should matter most. What are your biggest fears and concerns? What goals are most important to you? What trade-offs are you willing to make, and what ones are you not? (234)
  • The brain gives us two ways to evaluate experiences like suffering—there is how we apprehend such experiences in the moment and how we look at them afterward—and the two ways are deeply contradictory. The Nobel Prize–winning researcher Daniel Kahneman illuminated what happens in a series of experiments he recounted in his seminal book Thinking Fast and Slow. (236)
    • “Peak-End rule”: an average of the pain experienced at just two moments—the single worst moment of the procedure and the very end. (237)
    • 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. (238)
  • 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. (243)
  • 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. (243)
  • We are running up against the difficulty of maintaining a coherent philosophical distinction between giving people the right to stop external or artificial processes that prolong their lives and giving them the right to stop the natural, internal processes that do so. (244)
  • Gawande supports Euthanasia:
    • Inevitably, the question arises of how far those possibilities should extend at the very end—whether the logic of sustaining people’s autonomy and control requires helping them to accelerate their own demise when they wish to. (243)
    • "Certainly, suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary. Given the opportunity, I would support laws to provide these kinds of prescriptions to people." (245)
  • Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. (249)

Epilogue

Summary: Our ability to push against our morality is limited, and we should think about where we draw that line.

  • 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. (259)
  • Critical questions (259):
    • 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?
  • 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. (262)

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Created: 2025-01-06-Mon
Updated: 2025-03-26-Wed