Cover image for Being mortal : medicine and what matters in the end
Title:
Being mortal : medicine and what matters in the end
ISBN:
9781410478122
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Large Print edition.
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437 pages (large print) ; 23 cm.
Contents:
The independent self -- Things fall apart -- Dependence -- Assistance -- A better life -- Letting go -- Hard conversations -- Courage.
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Summary:
Atul Gawande tackles the hardest challenge of his profession: how medicine can not only improve life but also the process of its ending. Full of eye-opening research and riveting storytelling, Gawande asserts that medicine can comfort and enhance our experience even to the end, providing not only a good life but also a good end.
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Summary

Summary

Modern medicine has transformed the dangers of childbirth, injury, and infectious disease from harrowing to manageable. But in the face of our inevitable aging and death, what it can do often runs counter to what it should do. Through eye-opening research and gripping stories of his own patients and family, Atul Gawande reveals the suffering this has produced. He examines the profession's limitations and failures as life draws to a close. And he shows how the ultimate goal is not a good death, but a good life - until the very end. Book jacket.


Author Notes

Atul Gawande is a surgical resident in Boston and staff writer on medicine and science for The New Yorker. A former Rhodes scholar, he received his M.D. from Harvard Medical School. He lives with his wife and three children in Newton, Massachusetts.

(Publisher Fact Sheets) Atul Gawande is a surgeon at Brigham and Women's Hospital in Boston, a staff writer for The New Yorker, and a professor at Harvard Medical School and the Harvard School of Public Health. He is also the Executive Director of Ariadne Labs and chairman of Lifebox, a nonprofit organization making surgery safer globally.

He has written several books including Complications, Better, The Checklist Manifesto, and Being Mortal: Medicine and What Matters in the End. He has won the Lewis Thomas Prize for Writing about Science and two National Magazine Awards. He will be appearing at the 2015 Auckland Writers Festival in New Zealand. He won the prize for Adult Non-fiction in the Indies Choice Book Awards 2015 with Being Mortal: Medicine and What Matters in the End.

(Bowker Author Biography)


Reviews 6

Booklist Review

*Starred Review* Distressed by how the waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver's chance of benefit, surgeon Gawande (The Checklist Manifesto, 2010) confronts the contemporary experience of aging and dying. Culture and modern medicine encourage an end-of-life approach that focuses on safety and protection but is sadly shallow. He frets that residents of nursing homes are often lonely and bored. Physicians are keen on intervening whenever a body is diseased or broken. Yet this medical imperative applied to terminally ill individuals can be frustrating, expensive, and even disastrous. Gawande suggests that what most of us really want when we are elderly and incapable of taking care of ourselves are simple pleasures and the autonomy to script the final chapter of life. Making his case with stories about people who are extremely frail, very old, or dying, he explores some options available when decrepitude sets in or death approaches: palliative care, an assisted living facility, hospice, an elderly housing community, and family caregivers. One of these stories is the impassioned account of his father's deterioration and death from a tumor of the spinal cord. As a writer and a doctor, Gawande appreciates the value of a good ending.--Miksanek, Tony Copyright 2014 Booklist


New York Review of Books Review

IT BEGAN WITH a tingle in the surgeon's fingers and a pain in his neck. A couple of years later, he learned he had a tumor inside his spinal cord. That was when the difficult choices began. Should he have it removed right away in a risky operation, as his doctor recommended? Or should he take time to consider this question: At what point would the expanding tumor cause debility bad enough to justify the risk of greater debility or even death in trying to fight it? The surgeon in the story is the father of Atul Gawande, who is also a surgeon as well as a writer for The New Yorker. His new book, "Being Mortal," is a personal meditation on how we can better live with age-related frailty, serious illness and approaching death. It is also a call for a change in the philosophy of health care. Gawande writes that members of the medical profession, himself included, have been wrong about what their job is. Rather than ensuring health and survival, it is "to enable well-being." If that sounds vague, Gawande has plenty of engaging and nuanced stories to leave the reader with a good sense of what he means. In a society that values independence, what happens when that is no longer possible? We need to reckon with the reality of the body's eventual decline, he argues, think about what matters most to us, and adapt our society and medical profession to help people achieve that. Gawande writes: "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?" Medical professionals are the ones who are largely in control of how we spend our "waning days," he writes, yet they are focused on disease, not on living. "Medicine has been slow to confront the very changes that it has been responsible for - or to apply the knowledge we have about how to make old age better." The experts quoted here argue that doctors should not only treat disease but also concern themselves with people's functional abilities, and that most medical trainees should learn about geriatrics. In the first part of the book, Gawande explores different models of senior living - from multigenerational households to newfangled nursing homes. In the latter part, which is shorter, he shifts somewhat abruptly to end-of-life medicine, promoting hospice as a model of care. The two sections are anchored by two of Gawande's most memorable New Yorker essays, which make up two of the book's eight chapters - "Things Fall Apart" and "Letting Go." Around them are rich stories from his own family. "Being Mortal" is a valuable contribution to the growing literature on aging, death and dying. It contains unsparing descriptions of bodily aging and the way it often takes us by surprise. Gawande is a gifted storyteller, and there are some stirring, even tear-inducing passages here. The writing can be evocative. In a home for the aged in a New Delhi slum, mattresses are "pushed up against one another like a large sheet of postage stamps." The stories give a dignified voice to older people in the process of losing their independence. We see the world from their perspective, not just those of their physicians and worried family members. One of his most provocative arguments is that hardwon health and safety reporting requirements for elder care facilities might satisfy family members, but ignore what really matters to the residents in question. Despite the popularity of the term assisted living, "we have no good metrics for a place's success in assisting people to live," Gawande argues. A life of safety isn't the life most people really want for themselves. Gawande searches for models of care that promote frail people's ability to live a meaningful life, by imbuing them with cause or promoting their ability "to keep shaping the story of their life in the world." The reader may wonder if everyone in these innovative senior communities is as satisfied as the individuals Gawande profiles. Given that there is little data to back up the anecdotes, it's hard to know if there are real solutions here. There is also relatively little exploration of the options for people with dementia. On the other hand, if the various ideas Gawande describes work for some residents - bringing in cats and dogs and kids to help re-instill purpose; splitting up floors into smaller units that are more homelike; making aging-in-place more possible - then so much the better. Hallelujah, really. In the last part of the book, Gawande argues against the treatment-at-all-costs model that once prevailed in medicine. "People with serious illness have priorities besides simply prolonging their lives," he writes. "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." Some of the ideas, however, strain credibility, such as that an increase in people dying in the home in America beginning in the 1990s might reflect a stage when a "country's income climbs to the highest levels" (the single article Gawande includes as reference does not back the theory, and median income in the 1990s was not much lower than it is now in inflation-adjusted dollars). In the same section, he makes a sweeping statement about the proportion of home deaths in "some African cities" based on a study that involved only two cities in Botswana. On the one hand, Gawande is swayed by the paleontologist Stephen Jay Gould's essay "The Median Isn't the Message." After receiving a cancer diagnosis with a median survival of only eight months, Gould observed that some patients survived well beyond the eight month median. He became one of them, living some 20 years after experimental treatment, and dying from an unrelated cancer. Gawande writes: "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." And, he argues, our medical culture does just that. One of Gawande's most important observations is that reassessment is crucial. "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." Gawande offers a succinct discussion of euthanasia at the end of the book. "The debate is about what mistakes we fear most - the mistake of prolonging suffering or the mistake of shortening valued life." He critiques end-of-life policy in the Netherlands, calling the fact that so many Dutch people seek assisted suicide "a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end." He questions whether the Dutch have been slow to develop palliative care programs because "their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill." Gawande uses his father's powerful story to explore the concept of shared decision-making in medicine - the idea that the ideal modern doctor should be neither paternalistic nor informative but rather interpretive, helping patients determine their priorities and achieve them. He shares lessons he learned from a palliative care doctor who advises him to "ask, tell, ask" during a difficult discussion about a patient's prognosis: Ask what patients want to hear, tell them and then ask what they understand. Gawande identifies no perfect solutions to the problems inherent in bodily decline. He is just asking us to commit ourselves to creating better options and making choices with the goal of a purposeful life in mind. SHERI FINK, the author of "Five Days at Memorial," is a reporter at The Times.


Choice Review

Gawande's fourth popular book, Being Mortal, layers touching story after touching story into a devastating critique of how people approach the end of life. At times, keeping all the narratives straight proves difficult, yet each piece of each narrative remains powerful. These accounts are woven neatly together with personal and professional reflection as well as scholarship. For example, in the midst of telling readers about his grandmother-in-law's approach to the end of life, surgeon/journalist Gawande (Brigham and Women's Hospital; Harvard Medical School; The New Yorker) quotes B. Vladeck, summing up the origins of one problematic approach: "describing the history of nursing homes from the perspective of the elderly 'is like describing the opening of the American West from the perspective of the mules'" (Unloving Care: The Nursing Home Tragedy, 1980). As Being Mortal draws to a close, Gawande offers some (albeit tentative) recommendations for improving how people face the end of life. Though he does not break new ground here, he rightly points out and announces human shortcomings in a way that all can see and understand. Summing Up: Highly recommended. All levels/libraries. --Abraham P. Schwab, Indiana University--Purdue University Fort Wayne


Guardian Review

There's a Homeric hymn that sings of a mortal man beloved of one of the gods: Eos was goddess of the dawn, and so enamoured was she of Tithonus that she couldn't bear that one day he would die. She begged Zeus that her lover be granted immortality. "Too simple was queenly Eos," the poem goes on, "she thought not in her heart to ask youth for him, and to strip him of the slough of deadly age." The two lovers lived in great happiness for many years until Tithonus began to show signs of age. At first Eos banished him from her bed, though she still loved him, and "cherished him in her house and nourished him with food and ambrosia". Tortured by his immortality, Tithonus's body continued to fail: he became so weak that he could not even lift his withered limbs. Eos was unable to cure him of his miseries, but because of Zeus's intervention she was equally unable to let him die. Finally, she "laid him in a room and put to the shining doors. There he babbles endlessly, and no more has strength such as once he had in his supple limbs." The Greeks chose their myths with care; this one illustrates two dilemmas about death and ageing that in the west we are only now beginning to grapple with. The first is how we plan to care for loved ones who, though their bodies and minds are weakening, are granted great longevity. The second dilemma is how we manage the body's decline when a "cure" is out of reach. Through the two halves of his book, Atul Gawande - Boston surgeon, staff writer for the New Yorker, this year's choice for the BBC Reith lectures - has written an impassioned, broad-ranging and deeply personal exploration of both. The first dilemma concerns the tremendous success of modern healthcare: the infections that once killed most of us have been subdued, and the diseases that even a few decades ago killed us in our 60s and 70s - cancer, heart disease, stroke and emphysema - are increasingly treatable. It is now common to live into your 80s and even 90s, ages that in human history have been the exception rather than the rule. We know how to prolong the life of the body, but we still have little idea how to slow the ageing process or prolong the life of the mind. Even for those who avoid dementia, the weakness and frailty of extreme old age bring a reliance on others that often requires admission to a nursing home. It's a paradox that innovation-driven, individual-orientated societies have evolved medical technologies and therapeutics so advanced that we can keep people alive for longer than ever before, but those same societies are not set up to care for those who become dependent through old age. Sociologists tell us that prosperous non-western societies develop along similar lines: when people gain the financial means to live independently from their family, they choose to do so. Most elderly people, when they themselves become dependent, concur with this belief: the wish to avoid "being a burden" on the next generation is a powerful and transcultural one. Gawande explodes the myth that traditional societies are always more respectful towards the old. Before the postwar settlements and introduction of welfare states, those who reached an age advanced enough to require assistance were looked after by their family; if there was no family, they went to an almshouse. These were unregulated and often squalid (as the ones Gawande visits in India still are), accelerating the decline of those admitted. The social and medical advances in the 20th century led, in the western world, to the rise of hospitals, which gradually began to admit those with the irremediable problems associated with ageing. Nursing homes were devised specifically to manage this population; as institutions, they have their origins in a medical model of care. "Nursing home" has two words to it, and two aspects, but many prioritise the provision of "nursing" over the creation of a "home". In his 1961 study Asylums, Erving Goffman noted the shocking similarities between nursing homes and prisons. In common with orphanages, mental hospitals and military barracks, they were "total institutions", preoccupied with minimising risk and facilitating staff routines at the expense of granting adults autonomy and self-respect. Even now, there are many nursing homes in which clients are not allowed to walk alone in case they fall, eat certain foods they want in case they choke, use knives in case they cut themselves. In many of the institutional homes I visit as a GP, residents are not allowed to keep pets in case those pets inconvenience staff, or bite their owners. As Gawande notes in one of the many poignant passages in this book, we permit children to take more risks than these adults, who are presumably old enough to make their own choices - children at least are allowed to play on climbing frames. An obsession with risk is stultifying the lives of the most vulnerable in our society, in the years when their choices should be most cherished and respected - even if those choices shorten their lives. We have exalted longevity over what makes life worth living. More chillingly, Gawande shows how infantilisation of the old is promoted by profiteering companies. Building more compassionate institutions is not only straightforward, it costs nothing more, and the benefits in terms of improved quality of life are immense. If the first half of his book concerns nursing homes and how we can age with self-respect, the second half concerns palliative care and how we can die with grace. The stunning victories of medical science over the last century have, according to some critics, left too many doctors arrogant and unwilling to concede defeat (the militaristic cliches are essential to this vision of medicine and the body). We're waking up to that mistake now: hospice and palliative care are at last receiving the attention and the funding they deserve; helping our patients through a good death is increasingly acknowledged to be as important as helping them flourish while alive. Much of the second half of the book concerns the health system of the US where Gawande practises, and where the hospice movement and the provision of community palliative care are relatively undeveloped compared to those in the UK. In a moving series of reflections, he reveals just how terrible doctors are at telling patients when treatments are unlikely to work, and how hopeless they are at estimating how much time their terminally ill patients have left. It's one of the questions I'm most commonly asked after breaking the news of a terminal diagnosis, and one that is almost always impossible to answer, but I was shocked when Gawande revealed that doctors don't just routinely get it wrong - when asked to predict how long a terminally ill patient has to live, they overestimate on average by a factor of five. The intrusion of commercialised medicine, and the elevation of interests of insurance companies over those of patients, can complicate these issues considerably, but Gawande remains clear-sighted through the muddle of anxieties, conflicting emotions and vested interests. Towards the end of the book, he tells the story of his own father's decline and death from a tumour of the spine. His experience as a surgeon melts away and he finds himself navigating infirmity and dependency as a son, rather than as a clinician. It's the worried son, not the Boston surgeon, who reflects on the qualities he values in the doctors treating his father: not bullish arrogance, but acknowledgement of uncertainties and a willingness to accept risks. He finds doctors communicate most effectively when they jettison the position of detached, clinical observers and talk in terms of how they feel: "I am worried about your tumour because . . . " Often the bravest and most humane decision, he realises, is to do nothing at all. When time becomes short, Gawande has the presence of mind to ask his father: "How much are you willing to go through just to have a chance of living longer?" The answer helps guide his father to a relatively peaceful death in the arms of his family, as opposed to a technologised end on an intensive care unit. The message resounding through Being Mortal is that our lives have narrative - we all want to be the authors of our own stories, and in stories endings matter. Doctors and other clinicians have to get better at helping people with their endings, otherwise more and more of us will end our lives babbling behind shining doors. - Gavin Francis Caption: Captions: Clear-sighted . . . Gawande There's a Homeric hymn that sings of a mortal man beloved of one of the gods: Eos was goddess of the dawn, and so enamoured was she of Tithonus that she couldn't bear that one day he would die. She begged Zeus that her lover be granted immortality. "Too simple was queenly Eos," the poem goes on, "she thought not in her heart to ask youth for him, and to strip him of the slough of deadly age." The two lovers lived in great happiness for many years until Tithonus began to show signs of age. At first Eos banished him from her bed, though she still loved him, and "cherished him in her house and nourished him with food and ambrosia". Tortured by his immortality, Tithonus's body continued to fail: he became so weak that he could not even lift his withered limbs. Eos was unable to cure him of his miseries, but because of Zeus's intervention she was equally unable to let him die. Finally, she "laid him in a room and put to the shining doors. There he babbles endlessly, and no more has strength such as once he had in his supple limbs." Before the postwar settlements and introduction of welfare states, those who reached an age advanced enough to require assistance were looked after by their family; if there was no family, they went to an almshouse. These were unregulated and often squalid (as the ones Gawande visits in India still are), accelerating the decline of those admitted. The social and medical advances in the 20th century led, in the western world, to the rise of hospitals, which gradually began to admit those with the irremediable problems associated with ageing. Nursing homes were devised specifically to manage this population; as institutions, they have their origins in a medical model of care. "Nursing home" has two words to it, and two aspects, but many prioritise the provision of "nursing" over the creation of a "home". In his 1961 study Asylums, Erving Goffman noted the shocking similarities between nursing homes and prisons. In common with orphanages, mental hospitals and military barracks, they were "total institutions", preoccupied with minimising risk and facilitating staff routines at the expense of granting adults autonomy and self-respect. Even now, there are many nursing homes in which clients are not allowed to walk alone in case they fall, eat certain foods they want in case they choke, use knives in case they cut themselves. In many of the institutional homes I visit as a GP, residents are not allowed to keep pets in case those pets inconvenience staff, or bite their owners. As Gawande notes in one of the many poignant passages in this book, we permit children to take more risks than these adults, who are presumably old enough to make their own choices - children at least are allowed to play on climbing frames. - Gavin Francis.


Kirkus Review

A prominent surgeon and journalist takes a cleareyed look at aging and death in 21st-century America. Modern medicine can perform miracles, but it is also only concerned with preserving life rather than dealing with end-of-life issues. Drawing on his experiences observing and helping terminally ill patients, Gawande (The Checklist Manifesto: How to Get Things Right, 2009, etc.) offers a timely account of how modern Americans cope with decline and mortality. He points out that dying in America is a lonely, complex business. Before 1945, people could count on spending their last days at home. Now, most die in institutional settings, usually after trying every medical procedure possible to head off the inevitable. Quality of life is often sacrificed, in part because doctors lack the ability to help patients negotiate a bewildering array of medical and nonmedical options. Many, like Gawande's mother-in-law, Alice, find that they must take residence in senior housing or assisted care facilities due to the fact that no other reasonable options exist. But even the most well-run of these "homes" are problematic because they can only offer sterile institutional settings that restrict independence and can cause psychological distress. Moving in with adult children is also difficult due to the tensions and conflicts that inevitably arise. Yet the current system shows signs of reform. Rather than simply inform patients about their options or tell them what to do, some doctors, including the author, are choosing to offer the guidance that helps patients make their own decisions regarding treatment options and outcomes. By confronting the reality rather than pretending it can be beaten and understanding that "there are times where the cost of pushing exceeds its value," the medical establishment can offer the kind of compassion that allows for more humane ways to die. As Gawande reminds readers, "endings matter." A sensitive, intelligent and heartfelt examination of the processes of aging and dying. Copyright Kirkus Reviews, used with permission.


Library Journal Review

Starred Review. Gawande presents problems and potential solutions to the question of how we can best address our mortality. Through stories and research he shows that we are shifting from a highly medicalized end of life to an experience in which we can have some sort of meaning. Surgeon, writer, and public health researcher Gawande asks how we can live out our later years in the way we desire and how best to talk to our health-care providers to achieve that. He also discusses how health-care providers can and should approach talking to aging patients and their families. Robert Petkoff reads the book in a clear, distinct voice. The book is written from the first person and so the narration comes across very well. Listeners will gain great insight into ways of thinking about the important issues of facing mortality. VERDICT An excellent book for everyone but of particular interest to health-care providers and those approaching their later years or caring for the elderly.-Eric Albright, Tufts Univ. Health Sciences Lib., Boston (c) Copyright 2015. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.


Excerpts

Excerpts

Introduction I learned about a lot of things in medical school, but mortality wasn't one of them. Although I was given a dry, leathery corpse to dissect in my first term, that was solely a way to learn about human anatomy. Our textbooks had almost nothing on aging or frailty or dying. How the process unfolds, how people experience the end of their lives, and how it affects those around them seemed beside the point. The way we saw it, and the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise. 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. Some weeks we would practice our physical examination etiquette; other weeks we'd learn about the effects of socioeconomics and race on health. And one afternoon we contemplated the suffering of Ivan Ilyich as he lay ill and worsening from some unnamed, untreatable disease. In the story, Ivan Ilyich is forty-five years old, a midlevel Saint Petersburg magistrate whose life revolves mostly around petty concerns of social status. One day, he falls off a stepladder and develops a pain in his side. Instead of abating, the pain gets worse, and he becomes unable to work. Formerly an "intelligent, polished, lively and agreeable man," he grows depressed and enfeebled. Friends and colleagues avoid him. His wife calls in a series of ever more expensive doctors. None of them can agree on a diagnosis, and the remedies they give him accomplish nothing. For Ilyich, it is all torture, and he simmers and rages at his situation. "What tormented Ivan Ilyich most," Tolstoy writes, "was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and he only need keep quiet and undergo a treatment and then something very good would result." Ivan Ilyich has flashes of hope that maybe things will turn around, but as he grows weaker and more emaciated he knows what is happening. He lives in mounting anguish and fear of death. But death is not a subject that his doctors, friends, or family can countenance. That is what causes him his most profound pain. "No one pitied him as he wished to be pitied," writes Tolstoy. "At certain moments after prolonged suffering he wished most of all (though he would have been ashamed to confess it) for someone to pity him as a sick child is pitied. He longed to be petted and comforted. He knew he was an important functionary, that he had a beard turning grey, and that therefore what he longed for was impossible, but still he longed for it." As we medical students saw it, the failure of those around Ivan Ilyich to offer comfort or to acknowledge what is happening to him was a failure of character and culture. The latenineteenth-century Russia of Tolstoy's story seemed harsh and almost primitive to us. Just as we believed that modern medicine could probably have cured Ivan Ilyich of whatever disease he had, so too we took for granted that honesty and kindness were basic responsibilities of a modern doctor. We were confident that in such a situation we would act compassionately. What worried us was knowledge. While we knew how to sympathize, we weren't at all certain we would know how to properly diagnose and treat. We paid our medical tuition to learn about the inner process of the body, the intricate mechanisms of its pathologies, and the vast trove of discoveries and technologies that have accumulated to stop them. We didn't imagine we needed to think about much else. So we put Ivan Ilyich out of our heads. Yet within a few years, when I came to experience surgical training and practice, I encountered patients forced to confront the realities of decline and mortality, and it did not take long to realize how unready I was to help them. I began writing when I was a junior surgical resident, and in one of my very first essays, I told the story of a man whom I called Joseph Lazaroff. He was a city administrator who'd lost his wife to lung cancer a few years earlier. Now, he was in his sixties and suffering from an incurable cancer himself--a widely metastatic prostate cancer. He had lost more than fifty pounds. His abdomen, scrotum, and legs had filled with fluid. One day, he woke up unable to move his right leg or control his bowels. He was admitted to the hospital, where I met him as an intern on the neurosurgical team. We found that the cancer had spread to his thoracic spine, where it was compressing his spinal cord. The cancer couldn't be cured, but we hoped it could be treated. Emergency radiation, however, failed to shrink the cancer, and so the neurosurgeon offered him two options: comfort care or surgery to remove the growing tumor mass from his spine. Lazaroff chose surgery. My job, as the intern on the neurosurgery service, was to get his written confirmation that he understood the risks of the operation and wished to proceed. I'd stood outside his room, his chart in my damp hand, trying to figure out how to even broach the subject with him. The hope was that the operation would halt the progression of his spinal cord damage. It wouldn't cure him, or reverse his paralysis, or get him back to the life he had led. No matter what we did he had at most a few months to live, and the procedure was inherently dangerous. It required opening his chest, removing a rib, and collapsing a lung to get at his spine. Blood loss would be high. Recovery would be difficult. In his weakened state, he faced considerable risks of debilitating complications afterward. The operation posed a threat of both worsening and shortening his life. But the neurosurgeon had gone over these dangers, and Lazaroff had been clear that he wanted the operation. All I had to do was go in and take care of the paperwork. Lying in his bed, Lazaroff looked gray and emaciated. I said that I was an intern and that I'd come to get his consent for surgery, which required confirming that he was aware of the risks. I said that the operation could remove the tumor but leave him with serious complications, such as paralysis or a stroke, and that it could even prove fatal. I tried to sound clear without being harsh, but my discussion put his back up. Likewise when his son, who was in the room, questioned whether heroic measures were a good idea. Lazaroff didn't like that at all. "Don't you give up on me," he said. "You give me every chance I've got." Outside the room, after he signed the form, the son took me aside. His mother had died on a ventilator in intensive care, and at the time his father had said he did not want anything like that to happen to him. But now he was adamant about doing "everything." I believed then that Mr. Lazaroff had chosen badly, and I still believe this. He chose badly not because of all the dangers but because the operation didn't stand a chance of giving him what he really wanted: his continence, his strength, the life he had previously known. He was pursuing little more than a fantasy at the risk of a prolonged and terrible death--which was precisely what he got. The operation was a technical success. Over eight and a half hours, the surgical team removed the mass invading his spine and rebuilt the vertebral body with acrylic cement. The pressure on his spinal cord was gone. But he never recovered from the procedure. In intensive care, he developed respiratory failure, a systemic infection, blood clots from his immobility, then bleeding from the blood thinners to treat them. Each day we fell further behind. We finally had to admit he was dying. On the fourteenth day, his son told the team that we should stop. It fell to me to take Lazaroff off the artificial ventilator that was keeping him alive. I checked to make sure that his morphine drip was turned up high, so he wouldn't suffer from air hunger. I leaned close and, in case he could hear me, said I was going to take the breathing tube out of his mouth. He coughed a couple of times when I pulled it out, opened his eyes briefly, and closed them. His breathing grew labored, then stopped. I put my stethoscope on his chest and heard his heart fade away. Now, more than a decade after I first told Mr. Lazaroff's story, what strikes me most is not how bad his decision was but how much we all avoided talking honestly about the choice before him. We had no difficulty explaining the specific dangers of various treatment options, but we never really touched on the reality of his disease. His oncologists, radiation therapists, surgeons, and other doctors had all seen him through months of treatments for a problem that they knew could not be cured. We could never bring ourselves to discuss the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life. If he was pursuing a delusion, so were we. Here he was in the hospital, partially paralyzed from a cancer that had spread throughout his body. The chances that he could return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance. We just had another treatment he could undergo. Maybe something very good would result. We did little better than Ivan Ilyich's primitive nineteenthcentury doctors--worse, actually, given the new forms of physical torture we'd inflicted on our patient. It is enough to make you wonder, who are the primitive ones. 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. This reality has been largely hidden, as the final phases of life become less familiar to people. As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did. Those who somehow did die at home likely died too suddenly to make it to the hospital--say, from a massive heart attack, stroke, or violent injury--or were too isolated to get somewhere that could provide help. Across not just the United States but also the entire industrialized world, the experience of advanced aging and death has shifted to hospitals and nursing homes. When I became a doctor, I crossed over to the other side of the hospital doors and, although I had grown up with two doctors for parents, everything I saw was new to me. I had certainly never seen anyone die before and when I did it came as a shock. That wasn't because it made me think of my own mortality. Somehow the concept didn't occur to me, even when I saw people my own age die. I had a white coat on; they had a hospital gown. I couldn't quite picture it the other way round. I could, however, picture my family in their places. I'd seen multiple family members--my wife, my parents, and my children--go through serious, life-threatening illnesses. Even under dire circumstances, medicine had always pulled them through. The shock to me therefore was seeing medicine not pull people through. I knew theoretically that my patients could die, of course, but every actual instance seemed like a violation, as if the rules I thought we were playing by were broken. I don't know what game I thought this was, but in it we always won. Dying and death confront every new doctor and nurse. The first times, some cry. Some shut down. Some hardly notice. When I saw my first deaths, I was too guarded to cry. But I dreamt about them. I had recurring nightmares in which I'd find my patients' corpses in my house--in my own bed. "How did he get here?" I'd wonder in panic. I knew I would be in huge trouble, maybe criminal trouble, if I didn't get the body back to the hospital without getting caught. I'd try to lift it into the back of my car, but it would be too heavy. Or I'd get it in, only to find blood seeping out like black oil until it overflowed the trunk. Or I'd actually get the corpse to the hospital and onto a gurney, and I'd push it down hall after hall, trying and failing to find the room where the person used to be. "Hey!" someone would shout and start chasing me. I'd wake up next to my wife in the dark, clammy and tachycardic. I felt that I'd killed these people. I'd failed. Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. I knew these truths abstractly, but I didn't know them concretely-- that they could be truths not just for everyone but also for this person right in front of me, for this person I was responsible for. 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." But as I ride down the runway of the twenty-first century, trained in the deployment of our awesome arsenal of technology, I wonder exactly what being less arrogant really means. 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. There's no escaping the tragedy of life, which is that we are all aging from the day we are born. One may even come to understand and accept this fact. My dead and dying patients don't haunt my dreams anymore. But that's not the same as saying one knows how to cope with what cannot be mended. I am in a profession that has succeeded because of its ability to fix. 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. This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing. 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. As I pass a decade in surgical practice and become middleaged myself, I find that neither I nor my patients find our current state tolerable. But I have also found it unclear what the answers should be, or even whether any adequate ones are possible. I have the writer's and scientist's faith, however, that by pulling back the veil and peering in close, a person can make sense of what is most confusing or strange or disturbing. You don't have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver's chance of benefit. They are spent in institutions--nursing homes and intensive care units--where regimented, anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. 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. I wrote this book in the hope of understanding what has happened. Mortality can be a treacherous subject. 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? And what if there are better approaches, right in front of our eyes, waiting to be recognized? Copyright © 2014 by Atul Gawande Excerpted from Being Mortal: Medicine and What Matters in the End by Atul Gawande All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.


Table of Contents

Introductionp. 11
1 The Independent Selfp. 27
2 Things Fall Apartp. 47
3 Dependencep. 92
4 Assistancep. 128
5 A Better Lifep. 174
6 Letting Gop. 230
7 Hard Conversationsp. 293
8 Couragep. 354
Epiloguep. 396
Notes on Sourcesp. 403
Acknowledgmentsp. 429