Being Mortal | Notes & Review

Atul Gawande. Being Mortal: Medicine and What Matters in the End. Metropolitan Books, 2014. (282 pages)


PBS Special.

Being Mortal Frontline Cover

UPDATE: California just passed AB-15 End of Life, (See article).


It is enough to make you wonder, who are the primitive ones. (6)

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)

I’d seen multiple family members–my wife, 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. (7)

Death, of course, is not a failure. Death is normal. (8)

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. (9)

1. The Independent Self

…during the eighteenth century, in the United States and Europe, the direction of our lies changed. Whereas today people often understate their age to census takers, studies of past censuses have revealed that they used to overstate it. The dignity of old age was something to which everyone aspired. | But age no longer has the value of rarity. In America, in 1790, people aged sixty-five or older constituted less than 2 percent of the population; today, they are 14 percent. In Germany, Italy, and Japan, they exceed 20 percent. China is now the first country on earth with more than 100 million elderly people. (18)

New technology also creates new occupations and requires new expertise, which further undermines the value of long experience and seasoned judgment. (18)

But once parents were living markedly longer lives, tension emerged. For young people, the traditional family system became less a source of security than a struggle for control–over property, finances, and even the most basic decisions about how they could live. (19)

There is arguably no better time in history to be old. The lines of power between the generations have been renegotiated, and not in the way it is sometimes believed. The aged did not lose status and control so 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. (22)

There remains one problem with this way of living. 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? (22-23)

2. Things Fall Apart

The progress of medicine and public health has been an incredible boon–people get to live longer, healthier, more productive lives than ever before. Yet traveling along these altered paths, we regard living in the downhill stretches with a kind of embarrassment. (28)

In a sense, the advances of modern medicine have given us two revolutions: we’ve undergone a biological transformation to the course of our lives and also a cultural transformation of how we think about that course. (29)

“rectangularization” of survival. Throughout most of human history, a society’s population formed a sort of pyramid: young children represented the largest portion–the base–and each successively older cohort represented a smaller and smaller group. … Today we have as many fifty-year-olds as five-year olds. (35-36)

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. (41)

Give us a disease, and we can do something about it. But give us an elderly woman with high blood pressure, arthritic knees, and various other ailments besides–an elderly woman at risk of losing the life she enjoys–and we hardly know what to do and often only make matters worse. (44)

3. Dependence

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.

Old age is a continuous series of losses – Felix

Old age is not a battle. Old age is a massacre – Philip Roth, Everyman

How did we wind up in a world where the only choices for the very old seem to be either going down with the volcano or yielding all control over our lives? (68)

4. Assistance

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. (79)

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 form home, you don’t. (89)

If we shift as we age toward appreciating everyday pleasures and relationships rather than toward achieving, having, and getting, and if we find this more fulfilling, then why do we take so long to do it? Why do we wait until we’re old? (95)

First, to genuinely help people with living “is harder to do than to talk about” and it’s difficult to make caregivers think about what it really entails. She gave the example of helping a person dress. Ideally, you let people do what they can themselves, thus maintaining their capabilities and sense of independence. But, she said, “Dressing somebody is easier than letting them dress themselves. It takes less time. It’s less aggravation.” So unless supporting people’s capabilities is made a priority, the staff ends up dressing people like they’re rag dolls. Gradually, that’s how everything begins to go. The tasks come to matter more than the people.

| 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 the 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, [Keren] Wilson said, assisted living isn’t really built for the sake of older people so much as for the sake of their children. (105-106)

“We want autonomy for ourselves and safety for those we love.” That remains the main problem and paradox for the frail. “Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.” (106)

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. (108-109)

5. A Better Life

The Three Plagues of nursing home existence: boredom, loneliness, and helplessness. (116)

[via: I can’t help but see correspondence here with the three main tasks of adolescence, which are autonomy, identity, and community, of which, autonomy will play a large role in the rest of the book.]

“Culture strangles innovation in the crib.”

[via: Drucker stated it, “Culture eats strategy for breakfast.”]

It was a battle over fundamentally different worldviews: Were they running an institution or providing a home? (122)

I believe that the difference in death rates can be traced to the fundamental human need for a reason to live. – Bill Thomas

For [Bill] Thomas, it was the perfect demonstration of his theory about what living things provide. In place of boredom, they offer spontaneity. In place of loneliness, they offer companionship. In place of helplessness, they offer a chance to take care of another being. (125)

It is much harder to measure how much more worth people find in being alive than how many fewer drugs they depend on or how much longer they can live. But could anything matter more? (125)

The selfish we had always with us. But the divine right to be selfish was never more ingeniously defended. – Josiah Royce

…he argued, human beings need loyalty. 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. (126)

By nature, I am a sort of meeting place of countless streams of ancestral tendency. From moment to moment…I am a collection of impulses. We cannot see the inner light. Let us try the outer one. – Josiah Royce

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 had 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.

| That experiment has failed. If safety and protection were all we sought in life, perhaps we could conclude differently. But because we seek a life of worth and purpose, and yet are routinely denied the conditions that might make it possible, there is no other way to see what modern society has done. (128)

There are different concepts of autonomy. One is autonomy as free action–living completely independently, free of coercion and limitation. This kind of freedom is a common battle cry. But it is…a fantasy. … Our lives are inherently dependent on others and subject to forces and circumstances well beyond our control. Having more freedom seems better than having less. But to what end? 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. (140)

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)

The value of autonomy…lies in the scheme of responsibility it creates: autonomy makes each of us responsible for shaping his own life according to some coherent and distinctive sense of character, conviction, and interest. It allows us to lead our own lives rather than be led along them, so that each of us can be, to the extent such a scheme of rights can make this possible, what he has made himself. – Ronald Dworkin

All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties. (140-141)

This is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life–to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choice, in the name of safety, but to expand them, in the name of living a worthwhile life. (141)

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. (147)

6. Letting Go

And the insight was that 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)

In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an ICU because of terminal illness is for most people a kind of failure. (155)

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. (155)

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. (172)

A landmark 2010 study from the Massachusetts General Hospital had even more startling findings…those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives–and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it. (177-178)

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. (182)

7. Hard Conversations

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 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)

…the different kinds of relationships that we, as budding new clinicians, might have with our patients. The oldest, most traditional kind is a paternalistic relationship–we are medical authorities aiming to ensure that patients receive what we believe best for them. … The second type of relationship [Ezekiel and Linda Emanuel] termed “informative.” It’s the opposite of the paternalistic relationship. We tell you the facts and figures. The rest is up to you. (200) …a third type of doctor-patient relationship, which they call “interpretive.” Here the doctor’s role is to help patients determine what they want. … Experts have come to call this shared decision making. (201)

At some point, therefore, it becomes not only right but also necessary for a doctor to deliberate with people on their larger goals, to even challenge them to rethink ill-considered priorities and beliefs. (202)

But it’s the meaning behind the information that people are looking for more than the facts. The best way to convey meaning is to tell people what the information means to you yourself. (206)

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)

Life is choices, and they are relentless. (215)

8. Courage

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. … But even more daunting is the second kind of courage–the courage to act on the truth we find. … 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. (232)

People seem to have two different selves–an experiencing self who endures every moment equally and a remembering self who gives almost all the weight of judgment afterward to two single points in time, the worst moment and the last one. (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. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. (238)

An inconsistency is built into the design of our minds. We have strong preferences about the duration of our experiences of pain and pleasure. We want pain to be brief and pleasure to last. But our memory…has evolved to represent the most intense moment of an episode of pain or pleasure (the peak) and the feelings when the episode was at its end. A memory that neglects duration will not serve our preference for long pleasure and short pains. – Daniel Kahneman

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. …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)

At root, the debate is about what mistakes we fear most–the mistake of prolonging suffering or the mistake of shortening valued life. … At the same, I fear what happens when we expend the terrain of medical practice to include actively assisting people with speeding their death. I am less worried about abuse of these powers than I am about dependence on them. (244)


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. (25)

…whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we can do can be breathtaking. (260)


One of my favorite reads in a long time, not only in style, but in the raw depth of humanity that is displayed on these pages. My heart is filled with joy, peace, and the courage to embrace this biological truth myself, and I feel a greater sense of empowerment to minister to others who are nearing the end with purposeful story that brings meaning and life to the forefront. For this gift, I am grateful.

One minor contention. On page 93, Gawande writes, “Maslow argued that safety and survival remain our primary and foundational goals in life.” I would opine this may be a misunderstanding of Maslow’s “hierarchy.” Maslow would say that our highest goals are self-actualization, but they are simply predicated upon ensuring the other “needs” in the hierarchy are met. In other words, it’s hard to become a self-actualized human being if you’re scrambling for food, shelter, or clothing, or are concerned for your personal safety. Even with this interpretation, I concede that Gawande’s point is still apropos, that even that “base” need may be irrelevant towards the end of life.

I’ll close with one of Gawande’s closing remarks:

I never expected that among the most meaningful experiences I’d have as a doctor–and, really, as a human being–would come from helping others deal with what medicine cannot do as well as what it can. (260)

About VIA

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