Being Mortal: Medicine and What Matters in the End

by Atul Gawande

We did little better than Ivan Ilyich’s primitive nineteenth-century 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.

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. (Research suggests that subjects of the Roman Empire had an average life expectancy of twenty-eight years.) The natural course was to die before old age. Indeed, for most of history, death was a risk at every age of life and had no obvious connection with aging, at all. As Montaigne wrote, observing late-sixteenth-century life, “To die of age is a rare, singular, and extraordinary death, and so much less natural than others: it is the last and extremest kind of dying.”

What buoyed him, despite his limitations, was having a purpose.

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.

Moreover, she and Felix still had their own, private, decades-long conversation that had never stopped. He found great purpose in caring for her, and she, likewise, found great meaning in being there for him. The physical presence of each other gave them comfort. He dressed her, bathed her, helped feed her. When they walked, they held hands. At night, they lay in bed in each other’s arms, awake and nestling for a while, before finally drifting off to sleep. Those moments, Felix said, remained among their most cherished. He felt they knew each other, and loved each other, more than at any time in their nearly seventy years together.

She died in the short time between her arrival and his. When I saw him three months later, he was still despondent. “I feel as if a part of my body is missing. I feel as if I have been dismembered,” he told me.

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.

how we seek to spend our time may depend on how much time we perceive ourselves to have.

“It’s the rare child who is able to think, ‘Is this place what Mom would want or like or need?’ It’s more like they’re seeing it through their own lens.” The child asks, “Is this a place I would be comfortable leaving Mom?”

The most important finding of Thomas’s experiment wasn’t that having a reason to live could reduce death rates for the disabled elderly. The most important finding was that it is possible to provide them with reasons to live, period.

The answer, he believed, is that we all seek a cause beyond ourselves. This was, to him, an intrinsic human need. The cause could be large (family, country, principle) or small (a building project, the care of a pet). The important thing was that, in ascribing value to the cause and seeing it as worth making sacrifices for, we give our lives meaning.

Making lives meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does. The routine solutions haven’t yet become well defined. So Carson and others like her are figuring them out, one person at a time.

THERE ARE PEOPLE in the world who change imaginations. You can find them in the most unexpected places.

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. As Dworkin wrote in his remarkable 1986 essay on the subject, “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.” 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.

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. In modern society, we have come to assume that debility and dependence rule out such autonomy.

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.

“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.

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?

Block has a list of questions that she aims to cover with sick patients in the time before decisions have to be made: 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?

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.

Life is choices, and they are relentless. No sooner have you made one choice than another is upon you.

Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength.

Assisted living is far harder than assisted death, but its possibilities are far greater, as well.

Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms. This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.

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.

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? The