“Being Mortal” by Dr. Atul Gawande

This book explores the shortcomings in medicine when it comes to preparing patients for death. Is the goal to extend life as far out as possible or to make sure that a person’s last days as well spent as possible? In Dr. Gawande’s view, doctors are more like mechanics charged with fixing problems in a deteriorating old car rather than caretakers whose job is to help maintain a patient’s dignity and quality of life until their last day. He sees this as misguided and this book is a plea to his profession to do better.

Dr. Gawande interviews hospice care professionals and other doctors, and examines different treatment options for people entering old age or diagnosed with a terminal illness. He also weaves patient’s stories and his own experience into the narrative, such as is own father’s decline and his experiences delivering devastating news of terminal illness to patients. Being Mortal is a thoughtful examination of what is important in life and how to make the final days of those near death as full of life as possible.

Further Links:
Frontline: Being Mortal—PBS television companion to the book.
‘Letting Go: What should medicine do when it can’t save your life?’ Dr. Gawande’s New Yorker essay that inspired the book.
What the professionals had to say: The Guardian review.
Buy on Amazon: Being Mortal: Medicine and What Matters in the End

Stuff of Interest:
tachycardic—a heart rate higher than normal, typically 100 bpm or more.
cutaneous mechanoreceptors—nerves and sensory receptors
skein—a tangled or complicated arrangement, state, or situation.
Lewis Thomas, physician-writer— quoted as being skeptical of the efficacy of hospital care in 1937: “If being in a hospital bed made a difference, it was mostly the difference produced by warmth, shelter, and food, and attentive, friendly care, and the matchless skill of the nurses in providing these things. Whether you survived or not depended on the natural history of the disease itself. Medicine made little or no difference.”
Hill Burton Act, 1946—Federal law that provided massive government funding for hospital construction. Within twenty years, over 9,000 medical facilities were built across the country.
Park Place—The first assisted living facility, opened in Portland in 1983 by Karen Brown Wilson.
Eden Alternative—a senior living alternative that has lots of pets, greenery, and few residents that receive personalized care. Designed to pursue the idea that a life worth living can be created, in this case, by focusing on food, homemaking, and community.
The Median Isn’t the Message‘, by Stephen J. Gould—Essay by the renowned scientist that Dr. Gawunde appreciates, but disagrees with its blind optimism.
Nelene Fox—woman who died from breast cancer but whose estate won an $89 million settlement posthumously from her insurance company for withholding coverage for experimental treatment that was later deemed ineffective.
Four Models of the Physician-Patient Relationship‘, by Ezekiel J. Emanuel and Linda L. Emanuel—a scholarly article describing the power dynamic between physicians and patients. Summarized here.


Highlights:
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. 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.

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 do to. 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.

Health professionals have a formal classification system for the level of function a person has. If you cannon, without assistance, use the toilet, eat, dress, bathe, groom, get out of bed, get out of a chair, and walk—the eight “Activities of Daily Living”—then you lack the capacity for basic physical independence. If you cannot 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—the eight “Independent Activities of Daily Living”—then you lack the capacity to safely live on your own.

In contemporary societies, by contrast, old age and infirmity have gone from being a shared, multigenerational responsibility to a more or less private state—something experienced largely alone or with the aid of doctors and institutions.

Disturbed though my father was by the way America treated its elderly, the more traditional old age that my grandfather was able to maintain was possible only because my father’s siblings had not left home as he had. 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. The historical pattern is clear: as soon as people got the resources and opportunity to abandon that way of life, they were gone.

There is arguably no better time in history to be old. The lines of power between generations have been renegotiated, and not in the way it is sometimes believed. The aged did not lose status as much as share it. 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.

Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness of infirmity will strike. It is an inevitable as sunset.

Even our brains shrink: at the age of thirty, the brain is a three-pound organ that barely fits inside the skull; by our seventies, gray-matter loss leaves almost an inch of spare room. That’s why elderly people like my grandfather are so much more prone to cerebral bleeding after a blow to the head—the brain rattles around inside. The earliest portions to shrink are generally the frontal lobes, which govern judgment and planning, and the hippocampus, where memory is organized. As a consequence, memory and the ability to gather and weight multiple ideas—to multitask—peaks in midlife and then gradually declines. Processing speeds start decreasing well before age forty (which may be why mathematicians and physicists commonly do their best work in their youth). By age eighty-five, working memory and judgment are sufficiently impaired that 40 percent of us have textbook dementia.

The job of any doctor, Bludau later told me, is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world. Most doctors treat disease and figure that the rest will take care of itself. And if it doesn’t—if a patient is becoming infirm and heading toward a nursing home—well, that isn’t really a medical problem, is it?
To a geriatrician though, it is a medical problem. People can’t stop the aging of their bodies and minds, but there are ways to make it more manageable and to avert at least some of the worst effects.
The body’s decline creeps like a vine. Day to day, the changes can be imperceptible. You adapt. Then something happens that finally makes it clear that things are no longer the same.

When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not.

As hospitals sprang up, they became a comparatively more attractive place to put the infirm. That was finally what brought the poorhouses to empty out. One by one through the 1950s, the poorhouses closed, responsibility for those who’d been classified as elderly “paupers” was transferred to departments of welfare, and the sick and disabled were put in hospitals. But hospitals couldn’t solve the debilities of chronic illness and advancing age, and they began to fill up with people who had nowhere to go. 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.
This has been the persistent patter of how modern society has dealt with old age. The systems we’ve devised were almost always designed to solve some other problem. As one scholar put it, 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; they were certainly there, and the epochal events were certainly critical to the mules, but hardly anyone was paying very much attention to them at the time.”

There was so much more she felt she could do in her life. “I want to be helpful, play a role,” she said. She used to make her own jewelry, volunteer at the library. Now, her main activities were bingo, DVD movies, and other forms of passive group entertainment. The things she missed most, she told me, were her friendships, privacy, and a purpose to her days. Nursing homes have come a long way from the firetrap warehouses of neglect they used to be. 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.

This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.

Maslow argued that safety and survival remain our primary and foundational goals in life, not least when our options and capacities become limited. If true, the fact that public policy and concern about old age homes focus on health and safety is just a recognition and manifestation of those goals. They are assumed to be everyone’s firs priorities.
Reality is more complex, though. People readily demonstrate a willingness to sacrifice their safety and survival for the sake of something beyond themselves, such as family country, or justice. And this is regardless of age.
What’s more, our driving motivations in life, instead of remaining constant, change hugely over time and in many ways that don’t quite fit Maslow’s classic hierarchy. In young adulthood, people seek a life of growth and self-fulfillment, just as Maslow suggested. Growing up involves opening outward. We search out new experiences, wider social connections, and ways of putting our stamp on the world. When people reach the latter half of adulthood, however, their priorities change markedly. Most reduce the amount of time and effort they spend pursing achievement and social networks. They narrow in. Given the choice, young people prefer meeting new people to spending time with, say, a sibling; old people prefer the opposite. Studies find that as people grow older they interact with fewer people and concentrate more on spending time with family and established friends. They focus on being rather than doing and on the present more than the future.

Compounding matters, we have no good metrics for a place’s success in assisting people to live. By contrast, we have very precise ratings for health and safety. So you can guess what gets the attention from people who run places for the elderly: whether Dad loses weight, skips his medications, or has a fall, not whether he’s lonely.
Most frustrating and important, Wilson said, assisted living isn’t really built for the sake of older people so much as for the sake of their children. The children usually make the decision about where the elderly live, and you can see it in the way that places sell themselves. They try to create what the marketers call “the visuals”—the beautiful, hotel-like entryway, for instance, that caught Shelley’s eye. They tout their computer lab, their exercise center, and their trips to concerts and museums—features that speak much more to what a middle-aged person desires for a parent that to what the parent does.

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 sake but empty of anything they care about.

The two personas—the salesman and the defiant pain in the neck—seemed to come from the same place. I asked Thomas what his special technique for sales was as a kid. He said he didn’t have any. It was simply that “I was willing to be rejected. That’s what allows you to be a good salesperson. You have to be willing to be rejected.” It was a trait that let him persist until he got what he wanted and avoid whatever he didn’t want.

“I believe that the difference in death rates can be traced to the fundamental human need for a reason to live.” And other research was consistent with this conclusion. In the early 1970s, the psychologists Judith Rodin and Ellen Langer performed an experiment in which they got a Connecticut nursing home to give each of its residents a plant. Half of them were assigned the jon of watering their plant and attended a lecture on the benefits of taking on responsibilities in their lives. The other half had their plant watered fro them and attended a lecture on how the staff was responsible for their well-being. After a year and a half, the group encouraged to take more responsibility—even for such a small thing as a plant—proved more active and alert and appeared to live longer.

It does not necessarily produce happiness, and can even be painful, but 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 problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have almost no view at all. 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. For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns. It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.

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 shaping the story of their life in the world—to make choices and sustain connections to others according to their own priorities.

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, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.

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.

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.

Somehow, instead of holding on to the lifelong identity that was slipping away from him, he managed to redefine it. He moved his line in the sand. 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.

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. Such courage is difficult enough. We have many reasons to shrink from it. But even more daunting is the second kind of courage—the courage to act on the truth we find. The problem is that the wise course is so frequently unclear. For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen, it is hard to know what to do. But the challenge, I’ve come to see, is more fundamental than that. One has to decide whether one’s fears or one’s hopes are what should matter most.

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.

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.
We’ve been wrong about what our job is in medicine. 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?

When the 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.

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