Being Mortal: Medicine and What Matters in the End

by Atul Gawande

“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.

“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.

We had no difficulty explaining the specific dangers of various treatment options, but we never really touched on the reality of his disease.

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.

Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things.

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.

Health professionals have a formal classification system for the level of function a person has. If you cannot, 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 live safely on your own. My grandfather could perform only some of the basic measures of independence, and few of the more complex ones. But in India, this was not of any dire consequence. His situation prompted no family crisis meeting, no anguished debates over what to do with him. It was clear that the family would ensure my grandfather could continue to live as he desired. One of my uncles and his family lived with him, and with a small herd of children, grandchildren, nieces, and nephews nearby, he never lacked for help.

If independence is what we live for, what do we do when it can no longer be sustained?

People with incurable cancers, for instance, can do remarkably well for a long time after diagnosis. They undergo treatment. Symptoms come under control. They resume regular life. They don’t feel sick. But the disease, while slowed, continues progressing, like a night brigade taking out perimeter defenses. Eventually, it makes itself known, turning up in the lungs, or in the brain, or in the spine, as it did with Joseph Lazaroff. From there, the decline is often relatively rapid, much as in the past. Death occurs later, but the trajectory remains the same. In a matter of months or weeks, the body becomes overwhelmed.

“Mainstream doctors are turned off by geriatrics, and that’s because they do not have the faculties to cope with the Old Crock,” Felix Silverstone, the geriatrician, explained to me. “The Old Crock is deaf. The Old Crock has poor vision. The Old Crock’s memory might be somewhat impaired. With the Old Crock, you have to slow down, because he asks you to repeat what you are saying or asking. And the Old Crock doesn’t just have a chief complaint—the Old Crock has fifteen chief complaints. How in the world are you going to cope with all of them? You’re overwhelmed. Besides, he’s had a number of these things for fifty years or so. You’re not going to cure something he’s had for fifty years. He has high blood pressure. He has diabetes. He has arthritis. There’s nothing glamorous about taking care of any of those things.”

The three primary risk factors for falling are poor balance, taking more than four prescription medications, and muscle weakness. Elderly people without these risk factors have a 12 percent chance of falling in a year.

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.

We’re good at addressing specific, individual problems: colon cancer, high blood pressure, arthritic knees. 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.

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.”

“Old age is not a battle. Old age is...

“I’m in dread of what would happen if she becomes too hard for me to care for,” he said. “I try not to think too far ahead. I don’t think about next year. It’s too depressing. I just think about next week.”

Some tended to Bella more as a patient than as a person. She had a certain way she liked her hair brushed, for instance, but no one asked or figured it out.

Felix had worked out the best method to cut up her food so she could swallow it without difficulty, how to position her so she was most comfortable, how to dress her the way she preferred. But no matter how much he tried to show the staff, many of them did not see the point.

And the remaining six weeks until the casts could come off were physically exhausting for him. Yet he was relieved. He and Bella felt more control over her life. She was in her own place, in her own bed, with him beside her. And that mattered tremendously to him. Because four days after the casts came off, four days after she’d begun walking again, she died.

“I feel as if a part of my body is missing. I feel as if I have been dismembered,”

He had one great solace, however: that she hadn’t suffered, that she’d got to spend her last few weeks in peace at home in the warmth of their long love, instead of up on a nursing floor, a lost and disoriented patient.

Nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight—important medical goals, to be sure, but they are means, not ends.

They might have called the service they provided assisted living, but no one seemed to think it was their job to actually assist him with living—to figure out how to sustain the connections and joys that most mattered to him.

“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.”

It was the sort of place, she said, that her father feared more than anything. “He did not want his life reduced to a bed, a dresser, a tiny TV, and half of a room with the curtain between him and someone else.”

As our time winds down, we all seek comfort in simple pleasures—companionship, everyday routines, the taste of good food, the warmth of sunlight on our faces. We become less interested in the rewards of achieving and accumulating, and more interested in the rewards of simply being.

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.

it’s going to happen, there’s nothing I can do to stop it. I know my time is limited. And so what? I’ve had a good shot at it.”

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.

In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—much as nursing home reformers deploy staff to help people with severe disabilities.

Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed. More than 40 percent of oncologists admit to offering treatments that they believe are unlikely to work.

If terminal patients—rather than insurance companies or the government—had to pay the added costs for the treatments they chose instead of hospice, they would take the trade-offs into account more. Terminal cancer patients wouldn’t pay $80,000 for drugs, and end-stage heart failure patients wouldn’t pay $50,000 dollars for defibrillators offering at best a few months extra survival. But this argument ignores an important factor: the people who opt for these treatments aren’t thinking a few added months. They’re thinking years. They’re thinking they’re getting at least that lottery ticket’s chance that their disease might not even be a problem anymore.

Two-thirds of the terminal cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death.

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.

There is no single way to take people with terminal illness through the process, but there are some rules, according to Block. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them their best chance of achieving it. This process requires as much listening as talking.

about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.

Those who did would neither expect nor tolerate the extremes of multiple chemotherapy regimens, last-ditch surgical procedures, experimental therapies—when the problem’s ultimate outcome was so dismally clear.

We want information and control, but we also want guidance.

ONLY NOW DID I begin to recognize how understanding the finitude of one’s time could be a gift. After my father was given his diagnosis, he’d initially continued daily life as he always had—his clinical work, his charity projects, his thrice-weekly tennis games—but the sudden knowledge of the fragility of his life narrowed his focus and altered his desires,

Three months was the shortest, she said, three years the longest. And with treatment? She got mumbly. Finally she said that the longest might not have been that much more than three years. But with treatment, the average should shift toward the longer end. It was a hard and unexpected answer for us. “I didn’t realize,” my father said, his voice trailing off. I remembered what Paul Marcoux, Sara Monopoli’s oncologist, had told me about his patients. “I’m thinking, can I get a pretty good year or two out of this?… They’re thinking ten or twenty years.” We were thinking ten or twenty years, too.

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

When it is hard to know what will happen, it is hard to know what to do.

One has to decide whether one’s fears or one’s hopes are what should matter most.

What were her biggest fears and concerns? What goals were most important to her? What trade-offs was she willing to make, and what ones was she not?

The brain gives us two ways to evaluate experiences like suffering—there is how we apprehend such experiences in the moment and how we look at them afterward—

was not ending the way she ever envisioned, but it was nonetheless ending with her being able to make the choices that meant the most to her.

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.

We are running up against the difficulty of maintaining a coherent philosophical distinction between giving people the right to stop external or artificial processes that prolong their lives and giving them the right to stop the natural, internal processes that do so.

the debate is about what mistakes we fear most—the mistake of prolonging suffering or the mistake of shortening valued life.