Being Mortal: Medicine and What Matters in the End

by Gawande, Atul

  “Her vision was simple,” Wilson wrote later.

  She wanted a small place with a little kitchen and a bathroom. It would have her favorite things in it, including her cat, her unfinished projects, her Vicks VapoRub, a coffeepot, and cigarettes. There would be people to help her with the things she couldn’t do without help. In the imaginary place, she would be able to lock her door, control her heat, and have her own furniture. No one would make her get up, turn off her favorite soaps, or ruin her clothes. Nor could anyone throw out her “collection” of back issues and magazines and Goodwill treasures because they were a safety hazard. She could have privacy whenever she wanted, and no one could make her get dressed, take her medicine, or go to activities she did not like. She would be Jessie again, a person living in an apartment instead of a patient in a bed.

  Wilson didn’t know what to do when her mother told her these things. Her mother’s desires seemed both reasonable and—according to the rules of the places she’d lived—impossible. Wilson felt badly for the nursing home staff, who worked hard taking care of her mother and were just doing what they were expected to do, and she felt guilty that she couldn’t do more herself. In graduate school, her mother’s uncomfortable question nagged at her. The more she studied and probed, the more convinced she became that nursing homes would not accept anything like what Jessie envisioned. The institutions were designed in every detail for the control of their residents. The fact that this design was supposed to be for their health and safety—for their benefit—made the places only that much more benighted and impervious to change. 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.

  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 from home, you don’t. This loss of freedom was what people like Lou Sanders and Wilson’s mother, Jessie, dreaded.

  Wilson and her husband sat at their dining table and began sketching out the features of a new kind of home for the elderly, a place like the one her mother had pined for. Then they tried to get someone to build it and test whether it would work. They approached retirement communities and builders. None were interested. The ideas seemed impractical and absurd. So the couple decided to build the place on their own.

  They were two academics who had never attempted anything of the sort. But they learned one step at a time. They worked with an architect to lay out the plans in detail. They went to bank after bank to get a loan. When that did not succeed, they found a private investor who backed them but required them to give up majority ownership and to accept personal liability for failure. They signed the deal. Then the state of Oregon threatened to withhold licensing as senior housing because the plans stipulated that people with disabilities would be living there. Wilson spent several days camped out in one government office after another until she had secured an exemption. Unbelievably, she and her husband cleared every obstacle. And in 1983, their new “living center with assistance” for the elderly—named Park Place—opened in Portland.

  By the time it opened, Park Place had become far more than an academic pilot project. It was a major real estate development with 112 units, and they filled up almost immediately. The concept was as appealing as it was radical. Although some of the residents had profound disabilities, none were called patients. They were all simply tenants and were treated as such. They had private apartments with a full bath, kitchen, and a front door that locked (a touch many found particularly hard to imagine). They were allowed to have pets and to choose their own carpeting and furniture. They were given control over temperature settings, food, who came into their home and when. They were just people living in an apartment, Wilson insisted over and over again. But, as elders with advancing disabilities, they were also provided with the sorts of help that my grandfather found so readily with his family all around. There was help with the basics—food, personal care, medications. There was a nurse on-site and tenants had a button for summoning urgent assistance at any time of day or night. There was also help with maintaining a decent quality of life—having company, keeping up their connections in the outside world, continuing the activities they valued most.

  The services were, in most ways, identical to the services that nursing homes provide. But here the care providers understood they were entering someone else’s home, and that changed the power relations fundamentally. The residents had control over the schedule, the ground rules, the risks they did and didn’t want to take. If they wanted to stay up all night and sleep all day, if they wanted to have a gentleman or lady friend stay over, if they wanted not to take certain medications that made them feel groggy; if they wanted to eat pizza and M&M’s despite swallowing problems and no teeth and a doctor who’d said they should eat only pureed glop—well, they could. And if their mind had faded to the point that they could no longer make rational decisions, then their family—or whomever they’d designated—could help negotiate the terms of the risks and choices that were acceptable. With “assisted living,” as Wilson’s concept become known, the goal was that no one ever had to feel institutionalized.

  The concept was attacked immediately. Many longtime advocates for the protection of the elderly saw the design as fundamentally dangerous. How was the staff going to keep people safe behind closed doors? How could people with physical disabilities and memory problems be permitted to have cooktops, cutting knives, alcohol, and the like? Who was going to ensure that the pets they chose were safe? How was the carpeting going to be sanitized and kept free of urine odors and bacteria? How would the staff know if a tenant’s health condition had changed?

  These were legitimate questions. Is someone who refuses regular housekeeping, smokes cigarettes, and eats candies that cause a diabetic crisis requiring a trip to the hospital someone who is a victim of neglect or an archetype of freedom? There is no clean dividing line, and Wilson was not offering simple answers. She held herself and her staff responsible for developing ways of ensuring the safety of the tenants. At the same time, her philosophy was to provide a place where residents retained the autonomy and privacy of people living in their own homes—including the right to refuse strictures imposed for reasons of safety or institutional convenience.

  The state monitored the experiment closely. When the group expanded to a second location in Portland—this one had 142 units and capacity for impoverished elderly people on government support—the state required Wilson and her husband to track the health, cognitive capabilities, physical function, and life satisfaction of the tenants. In 1988, the findings were made public. They revealed that the residents had not in fact traded their health for freedom. Their satisfaction with their lives increased, and at the same time their health was maintained. Their physical and cognitive functioning actually improved. Incidence of major depression fell. And the cost for those on government support was 20 percent lower than it would have been in a nursing home. The program proved an unmitigated success.

  * * *

  AT THE CENTER of Wilson’s work was an attempt to solve a deceptively simple puzzle: what makes life worth living when we are old and frail and unable to care for ourselves? In 1943, the psychologist Abraham Maslow published his hugely influential paper “A Theory of Human Motivation,” which famously described people as having a hierarchy of needs. It is often depicted as a pyramid. At the bottom are our basic needs—the essentials of physiological survival (such as food, water, and air) and of safety (such as law, order, and stability). Up one level are the need for love and for belonging. Above that is our desire for growth—the opportunity to attain personal goals, to master knowledge and skills, and to be recognized and rewarded for our achievements. Finally, at the top is the desire for what Maslow termed “self-actualization”—self-fulfillment through pursuit of moral ideals and creati
vity for their own sake.

  Maslow argued that safety and survival remain our primary and foundational goals in life, not least when our options and capacities become limited. If true, the fact that public policy and concern about old age homes focus on health and safety is just a recognition and manifestation of those goals. They are assumed to be everyone’s first priorities.

  Reality is more complex, though. People readily demonstrate a willingness to sacrifice their safety and survival for the sake of something beyond themselves, such as family, country, or justice. And this is regardless of age.

  What’s more, our driving motivations in life, instead of remaining constant, change hugely over time and in ways that don’t quite fit Maslow’s classic hierarchy. In young adulthood, people seek a life of growth and self-fulfillment, just as Maslow suggested. Growing up involves opening outward. We search out new experiences, wider social connections, and ways of putting our stamp on the world. When people reach the latter half of adulthood, however, their priorities change markedly. Most reduce the amount of time and effort they spend pursuing achievement and social networks. They narrow in. Given the choice, young people prefer meeting new people to spending time with, say, a sibling; old people prefer the opposite. 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.

  Understanding this shift is essential to understanding old age. A variety of theories have attempted to explain why the shift occurs. Some have argued that it reflects wisdom gained from long experience in life. Others suggest it is the cognitive result of changes in the tissue of the aging brain. 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.

  Few researchers in recent decades have done more creative or important work sorting these arguments out than the Stanford psychologist Laura Carstensen. In one of her most influential studies, she and her team tracked the emotional experiences of nearly two hundred people over years of their lives. The subjects spanned a broad range of backgrounds and ages. (They were from eighteen to ninety-four years old when they entered the study.) At the beginning of the study and then every five years, the subjects were given a beeper to carry around twenty-four hours a day for one week. They were randomly paged thirty-five times over the course of that week and asked to choose from a list all the emotions they were experiencing at that exact moment.

  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.

  The findings raised a further question. 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? The common view was that these lessons are hard to learn. Living is a kind of skill. The calm and wisdom of old age are achieved over time.

  Carstensen was attracted to a different explanation. What if the change in needs and desires has nothing to do with age per se? Suppose it merely has to do with perspective—your personal sense of how finite your time in this world is. This idea was regarded in scientific circles as somewhat odd. But Carstensen had her own reason for thinking that one’s personal perspective might be centrally important—a near-death experience that radically changed her viewpoint on her own life.

  It was 1974. She was twenty-one, with an infant at home and a marriage already in divorce proceedings. She had only a high school education and a life that no one—least of all she—would have predicted might someday lead to an eminent scientific career. But one night, she left the baby with her parents and went out with friends to party and see the band Hot Tuna in concert. Coming back from the show, they piled into a VW minibus, and, on a highway somewhere outside Rochester, New York, the driver, drunk, rolled the minibus over an embankment.

  Carstensen barely survived. She had a serious head injury, internal bleeding, multiple shattered bones. She spent months in the hospital. “It was that cartoonish scene, lying on my back, leg tied in the air,” she told me. “I had a lot of time to think after the initial three weeks or so, when things were really touch and go and I was coming in and out of consciousness.

  “I got better enough to realize how close I had come to losing my life, and I saw very differently what mattered to me. What mattered were other people in my life. I was twenty-one. Every thought I’d had before that was: What was I going to do next in life? And how would I become successful or not successful? Would I find the perfect soul mate? Lots of questions like that, which I think are typical of twenty-one-year-olds.

  “All of a sudden, it was like I was stopped dead in the tracks. When I looked at what seemed important to me, very different things mattered.”

  She didn’t instantly recognize how parallel her new perspective was to the one old people commonly have. But the four other patients in her ward were all elderly women—their legs strung up in the air after hip fractures—and Carstensen found herself connecting with them.

  “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.

  “It was this experience that led me to study aging,” Carstensen said. But she didn’t know at the time that it would. “I was not on a trajectory to end up being a professor at Stanford by any means at that point in my life.” Her father, however, realized how bored she was lying there and took the opportunity to enroll her in a course at a local college. He went to all the lectures, audiotaped them, and brought the cassettes to her. She ended up taking her first college course in a hospital, on a women’s orthopedics ward.

  What was that first class, by the way? Introduction to Psychology. Lying there on that ward, she found she was living through the phenomena she was studying. Right from the start, she could see what the experts were getting right and what they were getting wrong.

  Fifteen years later, when she was a scholar, the experience led her to formulate a hypothesis: how we seek to spend our time may depend on how much time we perceive ourselves to have. When you are young and healthy, you believe you will live forever. You do not worry about losing any of your capabilities. People tell you “the world is your oyster,” “the sky is the limit,” and so on. And you are willing to delay gratification—to invest years, for example, in gaining skills and resources for a brighter future. You seek to plug into bigger streams of knowledge and information. You widen your networks of friends and connections, instead of hanging out with your mother. When horizons are measured in decades, which might as well be infinity to human beings, you most desire all that stuff at the top of Maslow’s pyramid—achievement, creativity, and other attributes of “self-actualization.” 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.

  Carstensen gave her hypothesis the impenetrable name “socioemotional selectivity theory.” The simpler way to say it is that perspective matters. She produced a series of experiments to test the idea. In one, she and her team studied a group of adult men ages twenty-three to sixty-six. Some of the men were healthy. But some were terminally ill with HIV/AIDS. The subjects were given a deck of cards with descriptions of people they might know, ranging in emotional closeness from family members to the author of a book they’d read, and they were asked to sort the cards according to how they would feel about spending half an hour with them. In general, the younger the subjects were, the less they valued time with people they were emotionally close to and the more they valued time with people who were potential sources of information or new friendship. However, among the ill, the age differences disappeared. The preferences of a young person with AIDS were the same as those of an old person.

  Carstensen tried to find holes in her theory. In another experiment, she and her team studied a group of healthy people ages eight to ninety-three. When they were asked how they would like to spend half an hour of time, the age differences in their preferences were again clear. But when asked simply to imagine they were about to move far away, the age differences again disappeared. The young chose as the old did. Next, the researchers asked them to imagine that a medical breakthrough had been made that would add twenty years to their life. Again, the age differences disappeared—but this time the old chose as the young did.

  Cultural differences were not significant, either. The findings in a Hong Kong population were identical to an American one. Perspective was all that mattered. As it happened, a year after the team had completed its Hong Kong study, the news came out that political control of the country would be handed over to China. People developed tremendous anxiety about what would happen to them and their families under Chinese rule. The researchers recognized an opportunity and repeated the survey. Sure enough, they found that people had narrowed their social networks to the point that the differences in the goals of young and old vanished. A year after the handover, when the uncertainty had subsided, the team did the survey again. The age differences reappeared. They did the study yet again after the 9/11 attacks in the United States and during the SARS epidemic that spread through Hong Kong in spring 2003, killing three hundred people in a matter of weeks. In each case the results were consistent. 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.