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.

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.

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.

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.

Historians find that the elderly of the industrial era did not suffer economically and were not unhappy to be left on their own. Instead, with growing economies, a shift in the pattern of property ownership occurred. As children departed home for opportunities elsewhere, parents who lived long lives found they could rent or even sell their land instead of handing it down. Rising incomes, and then pension systems, enabled more and more people to accumulate savings and property, allowing them to maintain economic control of their lives in old age and freeing them from the need to work until death or total disability. The radical concept of “retirement” started to take shape.

Whenever the elderly have had the financial means, they have chosen what social scientists have called “intimacy at a distance.” Whereas in early-twentieth-century America 60 percent of those over age sixty-five resided with a child, by the 1960s the proportion had dropped to 25 percent. By 1975 it was below 15 percent.

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.

We have drugs, fluids, surgery, intensive care units to get people through. They enter the hospital looking terrible, and some of what we do can make them look worse. But just when it looks like they’ve breathed their last, they rally. We make it possible for them to make it home—weaker and more impaired, though. They never return to their previous baseline.

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. We need help, often for long periods of time, and regard that as a weakness rather than as the new normal and expected state of affairs. We’re always trotting out some story of a ninety-seven-year-old who runs marathons, as if such cases were not miracles of biological luck but reasonable expectations for all. Then, when our bodies fail to live up to this fantasy, we feel as if we somehow have something to apologize for.

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

This is normal. Although the processes can be slowed—diet and physical activity can make a difference—they cannot be stopped.

These findings notwithstanding, the preponderance of the evidence is against the idea that our life spans are programmed into us. 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.

So today, with our average life span in much of the world climbing past eighty years, we are already oddities living well beyond our appointed time. When we study aging what we are trying to understand is not so much a natural process as an unnatural one.

Leonid Gavrilov, a researcher at the University of Chicago, argues that human beings fail the way all complex systems fail: randomly and gradually. As engineers have long recognized, simple devices typically do not age. They function reliably until a critical component fails, and the whole thing dies in an instant. A windup toy, for example, works smoothly

Engineers therefore design these machines with multiple layers of redundancy: with backup systems, and backup systems for the backup systems. The backups may not be as efficient as the first-line components, but they allow the machine to keep going even as damage accumulates.

I asked Silverstone whether gerontologists have discerned any particular, reproducible pathway to aging. “No,” he said. “We just fall apart.”

In 1950, children under the age of five were 11 percent of the US population, adults aged forty-five to forty-nine were 6 percent, and those over eighty were 1 percent. Today, we have as many fifty-year-olds as five-year-olds. In thirty years, there will be as many people over eighty as there are under five. The same pattern is emerging throughout the industrialized world.

Each year, about 350,000 Americans fall and break a hip. Of those, 40 percent end up in a nursing home, and 20 percent are never able to walk again. 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. Those with all three risk factors have almost a 100 percent chance.

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. The falls didn’t do it. The car accident didn’t do it. Instead, it was a scam that did.

DECLINE REMAINS OUR fate; death will someday come. But until that last backup system inside each of us fails, medical care can influence whether the path is steep and precipitate or more gradual, allowing longer preservation of the abilities that matter most in your life.

Chad Boult, the geriatrician who was the lead investigator of the University of Minnesota study, can tell you. A few months after he published the results, demonstrating how much better people’s lives were with specialized geriatric care, the university closed the division of geriatrics. “The university said that it simply could not sustain the financial losses,”

In the living room, Felix had a grand piano and, at his desk, piles of medical journals that he still subscribed to—“for my soul,” he said.

What buoyed him, despite his limitations, was having a purpose. It was the same purpose, he said, that sustained him in medicine: to be of service, in some way, to those around him.

He did not feel this responsibility to be a burden. With the narrowing of his own life, his ability to look after Bella had become his main source of self-worth.

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.

For Alice, it must have felt as if she had crossed into an alien land that she would never be allowed to leave. The border guards were friendly and cheerful enough. They promised her a nice place to live where she’d be well taken care of. But she didn’t really want anyone to take care of her; she just wanted to live a life of her own. And those cheerful border guards had taken her keys and her passport. With her home went her control.

Our old age homes didn’t develop out of a desire to give the frail elderly better lives than they’d had in those dismal places. We didn’t look around and say to ourselves, “You know, there’s this phase of people’s lives in which they can’t really cope on their own, and we ought to find a way to make it manageable.” No, instead we said, “This looks like a medical problem. Let’s put these people in the hospital. Maybe the doctors can figure something out.” The modern nursing home developed from there, more or less by accident.

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.

The hope, they told her, was that, with physical therapy, she’d learn to walk again and return to her apartment. But she never did. From then on, she was confined to a wheelchair and the rigidity of nursing home life. All privacy and control were gone.

She felt incarcerated, like she was in prison for being old.

Wilson believed she could create a place where people like Lou Sanders could live with freedom and autonomy no matter how physically limited they became. She thought that just because you are old and frail, you shouldn’t have to submit to life in an asylum.

Wilson decided to try spelling out on paper an alternative that would let frail elderly people maintain as much control over their care as possible, instead of having to let their care control them.

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.

Still others argue that the behavior change is forced upon the elderly and does not actually reflect what they want in their heart of hearts. They narrow in because the constrictions of physical and cognitive decline prevent them from pursuing the goals they once had or because the world stops them for no other reason than they are old. Rather than fight it, they adapt—or, to put it more sadly, they give in.

If Maslow’s hierarchy was right, then the narrowing of life runs against people’s greatest sources of fulfillment and you would expect people to grow unhappier as they age. But Carstensen’s research found exactly the opposite. The results were unequivocal. Far from growing unhappier, people reported more positive emotions as they aged. They became less prone to anxiety, depression, and anger. They experienced trials, to be sure, and more moments of poignancy—that is, of positive and negative emotion mixed together. But overall, they found living to be a more emotionally satisfying and stable experience as time passed, even as old age narrowed the lives they led.

“I was lying there, surrounded by old people,” she said. “I got to know them, see what was happening to them.” She noticed how differently they were treated from her. “I basically had doctors and therapists coming in and working with me all day long, and they would sort of wave at Sadie, the lady in the next bed, on the way out and say, ‘Keep up the good work, hon!’” The message was: This young woman’s life had possibilities. Theirs didn’t.

But as your horizons contract—when you see the future ahead of you as finite and uncertain—your focus shifts to the here and now, to everyday pleasures and the people closest to you.

When, as the researchers put it, “life’s fragility is primed,” people’s goals and motives in their everyday lives shift completely. It’s perspective, not age, that matters most.

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.

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 safe but empty of anything they care about.

The aim, he said, was to attack what he termed the Three Plagues of nursing home existence: boredom, loneliness, and helplessness.

As he saw it, habits and expectations had made institutional routines and safety greater priorities than living a good life and had prevented the nursing home from successfully bringing in even one dog to live with the residents. He wanted to bring in enough animals, plants, and children to make them a regular part of every nursing home resident’s life. Inevitably the settled routines of the staff would be disrupted, but then wasn’t that part of the aim?

Their study found that the number of prescriptions required per resident fell to half that of the control nursing home. Psychotropic drugs for agitation, like Haldol, decreased in particular. The total drug costs fell to just 38 percent of the comparison facility. Deaths fell 15 percent. The study couldn’t say why. But Thomas thought he could. “I believe that the difference in death rates can be traced to the fundamental human need for a reason to live.”

For 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. “[Mr. L.] began eating again, dressing himself, and getting out of his room,” Thomas reported. “The dogs needed a walk every afternoon, and he let us know he was the man for the job.” Three months later, he moved out and back into his home. Thomas is convinced the program saved his life.

Royce wanted to understand why simply existing—why being merely housed and fed and safe and alive—seems empty and meaningless to us. What more is it that we need in order to feel that life is worthwhile? The answer, he believed, is that we all seek a cause beyond ourselves. This was, to him, an intrinsic human need.

The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror. But if you do, it is not.

With the animals and children and plants Bill Thomas helped usher into Chase Memorial Nursing Home, a program he called the Eden Alternative, he provided a small opening for residents to express loyalty—a limited but real opportunity for them to grab on to something beyond mere existence. And they took it hungrily.

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.

She was there for a year before moving to NewBridge, and it was, she said, “No comparison. No comparison.” This was the opposite of Goffman’s asylum. Human beings, the pioneers were learning, have a need for both privacy and community, for flexible daily rhythms and patterns, and for the possibility of forming caring relationships with those around them. “Here it’s like living in my own home,” Makover said.