Being Mortal: Medicine and What Matters in the End

by Gawande, Atul

  Tolstoy recognized this. As Ivan Ilyich’s health fades and he realizes that his time is limited, his ambition and vanity disappear. He simply wants comfort and companionship. But almost no one understands—not his family, his friends, or the stream of eminent physicians whom his wife pays to examine him.

  Tolstoy saw the chasm of perspective between those who have to contend with life’s fragility and those who don’t. He grasped the particular anguish of having to bear such knowledge alone. But he saw something else, as well: even when a sense of mortality reorders our desires, these desires are not impossible to satisfy. Although none of Ivan Ilyich’s family or friends or doctors grasp his needs, his servant Gerasim does. Gerasim sees that Ivan Ilyich is a suffering, frightened, and lonely man and takes pity on him, aware that someday he himself would share his master’s fate. While others avoid Ivan Ilyich, Gerasim talks to him. When Ivan Ilyich finds that the only position that relieves his pain is with his emaciated legs resting on Gerasim’s shoulders, Gerasim sits there the entire night to provide comfort. He doesn’t mind his role, not even when he has to lift Ilyich to and from the commode and clean up after him. He provides care without calculation or deception, and he doesn’t impose any goals beyond what Ivan Ilyich desires. This makes all the difference in Ivan Ilyich’s waning life:

  Gerasim did it all easily, willingly, simply, and with a good nature that touched Ivan Ilyich. Health, strength, and vitality in other people were offensive to him, but Gerasim’s strength and vitality did not mortify but soothed him.

  This simple but profound service—to grasp a fading man’s need for everyday comforts, for companionship, for help achieving his modest aims—is the thing that is still so devastatingly lacking more than a century later. It was what Alice Hobson needed but could not find. And it was what Lou Sanders’s daughter, through four increasingly exhausting years, discovered she could no longer give all by herself. But with the concept of assisted living, Keren Brown Wilson had managed to embed that vital help in a home.

  * * *

  THE IDEA SPREAD astoundingly quickly. Around 1990, based on Wilson’s successes, Oregon launched an initiative to encourage the building of more homes like hers. Wilson worked with her husband to replicate their model and to help others do the same. They found a ready market. People proved willing to pay considerable sums to avoid ending up in a nursing home, and several states agreed to cover the costs for poor elders.

  Not long after that, Wilson went to Wall Street for capital to build more places. Her company, Assisted Living Concepts, went public. Others sprang up with names like Sunrise, Atria, Sterling, and Karrington, and assisted living became the fastest-growing form of senior housing in the country. By 2000, Wilson had expanded her company from fewer than a hundred employees to more than three thousand. It operated 184 residences in eighteen states. By 2010, the number of people in assisted living was approaching the number in nursing homes.

  But a distressing thing happened along the way. The concept of assisted living became so popular that developers began slapping the name on just about anything. The idea mutated from a radical alternative to nursing homes into a menagerie of watered-down versions with fewer services. Wilson testified before Congress and spoke across the country about her increasing alarm at the way the idea was evolving.

  “With a general desire to adopt the name, suddenly assisted living was a redecorated wing of a nursing facility, or a sixteen-bed boarding house looking to attract private-pay clients,” she reported. However much she attempted to uphold her founding philosophy, few others were as committed.

  Assisted living most often became a mere layover on the way from independent living to a nursing home. It became part of the now widespread idea of a “continuum of care,” which sounds perfectly nice and logical but manages to perpetuate conditions that treat the elderly like preschool children. Concern about safety and lawsuits increasingly limited what people could have in their assisted living apartments, mandated what activities they were expected to participate in, and defined ever more stringent move-out conditions that would trigger “discharge” to a nursing facility. The language of medicine, with its priorities of safety and survival, was taking over, again. Wilson pointed out angrily that even children are permitted to take more risks than the elderly. They at least get to have swings and jungle gyms.

  A survey of fifteen hundred assisting living facilities published in 2003 found that only 11 percent offered both privacy and sufficient services to allow frail people to remain in residence. The idea of assisted living as an alternative to nursing homes had all but died. Even the board of Wilson’s own company—having noted how many other companies were taking a less difficult and less costly direction—began questioning her standards and philosophy. She wanted to build smaller buildings, in smaller towns where elderly people had no options except nursing homes, and she wanted units for low-income elderly on Medicaid. But the more profitable direction was bigger buildings, in bigger cities, without low-income clientele or advanced services. She’d created assisted living to help people like her mother, Jessie, live a better life, and she’d shown that it could be profitable. But her board and Wall Street wanted avenues to even bigger profits. Her battles escalated until, in 2000, she stepped down as CEO and sold all her shares in the company she’d founded.

  More than a decade has passed since. Keren Wilson has crossed into middle age. When I spoke to her not long ago, her crooked-toothed smile, slumped shoulders, reading glasses, and white hair made her look more like a bookish grandmother than the revolutionary entrepreneur who’d founded a worldwide industry. Ever the gerontologist, she gets excited when the conversation veers to research questions, and she is precise when she speaks. She nonetheless remains the sort of person who is perpetually in the grip of big, seemingly impossible problems. The company made her and her husband wealthy, and with their money they started the Jessie F. Richardson Foundation, named after her mother, in order to continue the work of transforming care for the elderly.

  Wilson spends much of her time back in the West Virginia coal counties around where she was born—places like Boone and Mingo and McDowell. West Virginia has one of the oldest and poorest populations of any state in the country. As in so much of the world, it is a place where the young leave to seek better opportunities and the elderly are left behind. There, in the hollows where she grew up, Wilson is still trying to work out how ordinary people can age without having to choose between neglect and institutionalization. It remains among the most uncomfortable questions we face.

  “I want you to know that I still love assisted living,” she said, and she repeated herself: “I love assisted living.” It had created a belief and expectation that there could be something better than a nursing home, she said, and it still does. Nothing that takes off becomes quite what the creator wants it to be. Like a child, it grows, not always in the expected direction. But Wilson continues to find places where her original intention remains alive.

  “I love it when assisted living works,” she said.

  It’s just that in most places it doesn’t.

  * * *

  FOR LOU SANDERS, it didn’t. Shelley felt lucky to find an assisted living facility near her home that would accept him with his meager finances. His savings were almost gone, and most other places expected upfront payments of hundreds of thousands of dollars. The home she found for Lou received government subsidies that made it affordable. It had a lovely porch, fresh paint, plenty of light in the lobby, a pretty library, and reasonably spacious apartments. It seemed inviting and professional. Shelley liked it from the first visit. But Lou resisted. He looked around and saw not a single person without a walker.

  “I’ll be the only one on my own two feet,” he said. “It’s not for me.” They went back home.

  Not long after, however, he had yet another fall. He went down hard in a parking lot, and his head took a sickening bounce on the asphalt. He didn’t come to for a while. He was admitted to the hospi
tal for observation. After that, he accepted that things had changed. He let Shelley put him on the waiting list for the assisted living facility. An opening came up just before his ninety-second birthday. If he didn’t take the spot, they told him, he’d go to the bottom of the list. His hand was forced.

  After the move, he wasn’t angry with Shelley. But she might have found anger easier to deal with. He was just depressed, and what is a child to do about that?

  Some of the problem, Shelley felt, was just the difficulty of dealing with change. At his age, Lou didn’t do well with change. But she sensed that there was more to it than that. Lou looked lost. He didn’t know a soul, and there was hardly another male to be found. He would look around thinking, What is a guy like me doing stuck in a place like this—with its bead-making workshops, cupcake-decorating afternoons, and crummy, Danielle Steel–filled library? Where was his family, or his friend the mailman, or Beijing, his beloved dog? He didn’t belong. Shelley asked the activities director if she would plan a few activities that were more gender appropriate, maybe start a book club. But bah, like that was going to help.

  What bothered Shelley most was how little curiosity the staff members seemed to have about what Lou cared about in his life and what he had been forced to forfeit. They didn’t even recognize their ignorance in this regard. 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. Their attitude seemed to result from incomprehension rather than cruelty, but, as Tolstoy would have said, what’s the difference in the end?

  Lou and Shelley worked out a compromise. She would bring him home every Sunday through Tuesday. That let him have something to look forward to each week and helped her feel better, too. At least, he’d have a couple days a week of the life he’d enjoyed.

  I asked Wilson why assisted living so often fell short. She saw several reasons. 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, 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 than to what the parent does. Above all, they sell themselves as safe places. They almost never sell themselves as places that put a person’s choices about how he or she wants to live first and foremost. Because it’s often precisely the parents’ cantankerousness and obstinacy about the choices they make that drive children to bring them on the tour to begin with. Assisted living has become no different in this respect than nursing homes.

  A colleague once told her, Wilson said, “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.”

  She puts some of the blame on the elderly. “Older people are in part responsible for this because they disperse the decision making to their children. Part of it is an assumption about age and frailty, and it’s also a bonding thing that goes on from older people to children. It’s sort of like, ‘Well, you’re in charge now.’”

  But, she said, “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?”

  Lou had not been in the assisted living home a year before it became inadequate for him. He’d initially made the best of it. He discovered the one other Jewish guy in the place, a man named George, and they hit it off. They played cribbage and each Saturday went to temple, a routine Lou had endeavored all his life to avoid. Several of the ladies took special interest in him, which he mostly deflected. But not always. He had a little party one evening in his apartment, at which he was joined by two of his admirers and broke out a bottle of brandy he’d been given.

  “Then my father passed out and hit his head on the floor and ended up in the emergency room,” Shelley said. He could laugh about it later, when he got out of rehab. “Look at that,” she recalled him saying. “I have the women over. Then one little drink, and I pass out.”

  Between the three days in Shelley’s home each week and the pieces of a life Lou put together the rest of the week—the assisted living home’s fecklessness notwithstanding—he was managing. Doing so had taken months. At ninety-two, he gradually rebuilt an everyday life he could abide.

  His body wouldn’t cooperate, though. His postural hypotension worsened. He passed out more frequently—not just when he had a brandy. It could be day or night, walking around or getting out of bed. There were multiple ambulance rides and trips to the doctor for X-rays. Things got to the point where he couldn’t manage the long hallway and elevator to the dining room for meals anymore. He continued to refuse a walker. It was a point of pride. Shelley had to stock his refrigerator with prepared foods he could microwave.

  She found herself worrying about him all over again. He wasn’t eating properly. His memory was getting worse. And even with the regular health aide visits and evening checks, he was mostly sitting in his room by himself. She felt he didn’t have enough supervision for how frail he was becoming. She would have to move him to somewhere with twenty-four-hour care.

  She visited a nursing home nearby. “It was actually one of the nicer ones,” she said. “It was clean.” But it was a nursing home. “You had the people in their wheelchairs all slumped over and lined up in the corridors. It was horrible.” 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.”

  But, she said, as she walked out of the place she thought, “This is what I have to do.” Awful as it seemed, it was where she had to put him.

  Why, I asked?

  “To me, safety was paramount. That came before anything. I had to think of his safety,” she said. Keren Wilson was right about the way the process evolves. Out of love and devotion, Shelley felt she had no choice but to put him where he dreaded.

  I pressed her. Why? He had adjusted to where he was. He’d reassembled the pieces of a life—a friend, a routine, some things he still liked to do. It was true that he wasn’t as safe as he would be in a nursing home. He still feared having that big fall and no one finding him before it was too late. But he was happier. And given his druthers, he’d choose the happier place. So why choose differently?

  She didn’t know how to answer. She found it hard to fathom any other way. He needed someone to look after him. He wasn’t safe. Was she rea
lly supposed to just leave him there?

  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.

  5 • A Better Life

  In 1991, in the tiny town of New Berlin, in upstate New York, a young physician named Bill Thomas performed an experiment. He didn’t really know what he was doing. He was thirty-one years old, less than two years out of family medicine residency, and he had just taken a new job as medical director of Chase Memorial Nursing Home, a facility with eighty severely disabled elderly residents. About half of them were physically disabled; four out of five had Alzheimer’s disease or other forms of cognitive disability.

  Up until then Thomas had worked as an emergency physician at a nearby hospital, the near opposite of a nursing home. People arrived in the emergency room with discrete, reparable problems—a broken leg, say, or a cranberry up the nose. If a patient had larger, underlying issues—if, for instance, the broken leg had been caused by dementia—his job was to ignore the issues or send the person somewhere else to deal with them, such as a nursing home. He took this new medical director job as a chance to do something different.