Being Mortal

The very old often say they don’t fear death—they fear what happens just before death, like losing hearing, memory, friends, and a way of life. People can live and manage a long time, but eventually losses accumulate. For Felix, it isn’t his own problems that accumulate, it is Bella’s. She loses her vision completely, her hearing becomes poor, and her memory is impaired. Still, they are grateful to have each other and to care for each other. 

One day, Bella develops a cold, and her eardrum ruptures from fluid accumulating. As a result, she becomes totally deaf, severing all communication between her and Felix. Even the simplest things are confusing. Felix doesn’t know what to do, but before they transfer to a nursing home floor, Bella’s right eardrum mends, and they are able to communicate again. Felix doesn’t know what would happen if it recurred.

Then, one day, Bella falls and snaps her fibula in both legs—she has to move to the nursing home floor for round-the-clock care. The staff is professional and lifts some of their burdens, but they treat Bella more as a patient than a person, dressing her like a rag doll, for example. There are particular ways Felix knows to care for her, but the staff doesn’t learn these ways.

Felix moves Bella back downstairs, though the staff continues to work in Felix and Bella’s home. Felix feels more control there, and Bella is more comfortable. This makes a big difference, as four days after Bella’s casts come off, she collapses at lunch. An ambulance comes to take her to the hospital, and she dies on the way there. When Gawande sees Felix three months later, he feels that a part of himself is missing. But Felix is glad that Bella didn’t suffer and that she got to spend her last few weeks at home.

Alice Hobson felt the same dread of leaving her home. But after the scam incident, it was apparent that she wasn’t safe living on her own anymore. Jim began a search for a retirement home, looking for a place within a reasonable driving distance and an affordable price range. He wanted a community with apartments for independent living and a floor with nursing capabilities should Alice need them someday.

Alice ultimately chose a complex Gawande calls Longwood House. She moved into a one-bedroom apartment there in the fall of 1992. It was spacious and homey, but after a few weeks, Alice became withdrawn. Gawande thinks that this is perhaps because on the very first day, she thought her car was stolen and notified the police, but she simply parked it in the wrong lot. Mortified, she gave up her car. She also ate little and avoided group activities. She was depressed, and medication didn’t help.

In the past, people might have been thrilled to live in a place like Longwood House. Before pensions and Social Security, the elderly worked until illness became debilitating. If they didn’t have family and weren’t independently wealthy, they had virtually no options except a poorhouse, which were filthy and dilapidated. The Great Depression sparked a new era, however. With the passage of Social Security in 1935, the United States created a system of national pensions, and retirement became a mass phenomenon. In developing countries, poorhouses remain common, but in the United States, even poor people can expect nursing homes with meals, health services, physical therapy, and activities.

Longwood House had a lot going for it, but Alice never got used to being there. She only grew more miserable. Gawande asked her about this, but Alice couldn’t put a finger on what made her unhappy. A few years earlier Gawande read about the case of Harry Truman, an 83-year-old man who refused to budge from his home at the foot of Mount Saint Helens in March 1980 when the volcano began to steam and rumble. He didn’t believe the volcano would actually blow, and he didn’t want to leave his home, thinking that losing it would kill him anyway. On May 18, 1980, the volcano erupted, and Truman was buried in his home. He became an icon, taking his chances and living life on his own terms. 

Alice wasn’t facing a volcano, but her feeling was the same. The things that made Longwood House safer and more manageable were the things that made it hard for her. Aides and nurses monitored her diet and health. They observed her growing unsteadiness. They forced her to take her medication under their supervision. While it was a friendly place, she lost control of her life.

The modern nursing home developed in the middle of the 20th century, when medicine underwent rapid and historic transformations. Before that time, if a person were ill, doctors mostly tended to them in their own bed. Hospitals were mainly custodial, providing warmth, shelter, food, and care from nurses, but they did little to alleviate disease. After World War II, antibiotics and other drugs became commonplace and surgical practices improved. As a result, hospitals transformed from symbols of illness to a place for cures. Hospitals exploded; in the two decades after 1946, more than 9,000 new facilities were built.

At hospitals, people gave over nearly every part of their lives to doctors and nurses in exchange for these cures. And many of the people who spent a long time in hospitals were the ill and frail who used to live in poorhouses. But the hospitals did not have the capacity for these people, and so in 1954 lawmakers provided funding to enable them to build separate custodial units for patients needing care over an extended period of time. This created the modern nursing homes, which were meant to clear out hospital beds. This is the problem of how modern society deals with old age: the systems are designed to fix problems other than providing a place for elderly people to live meaningful lives.

The next spur to nursing home growth came in 1965 when Medicare was enacted. The law specified that Medicare, the United States’ health insurance system for the aged and disabled, would only pay for care in facilities that met basic health and safety standards. Many hospitals couldn’t meet those standards, and so the Bureau of Health Insurance dictated that if a hospital came close to meeting those standards, it would be approved for Medicare. This gave an opening to nursing homes, which asserted that they were close to the standard as well, and their populations exploded. By 1970, 13,000 facilities were built. With time, regulations were tightened, but the core problem persists: they were never truly made for the people who lived in them.

One morning in late 1993, Alice fell while alone in her apartment. She had no serious injuries, but Longwood House encouraged her to move to the nursing floor. She refused, until she fell again and broke her hip. Alice was left with no choice but to move into the nursing home, and she needed help with all her daily activities. Her privacy and control were gone. She wore hospital clothes most of the time and stuck to a schedule of eating and bathing dictated to her by the staff. She lived with whomever they assigned, and she felt like she was in prison for being old.

Though the official aim of nursing homes is to care for people, being under this form of care doesn’t bear any resemblance to living—people expect more from life than safety. This is why many nursing home residents resist standard practices. Some, like Alice, avoid group activities or medications. Some are feistier, like a resident who sneaks in cigarettes and alcohol. In bad places, staff will physically restrain people or subdue them with medications. This is the problem with a society that faces the final phase of life by not thinking about it. Institutions address goals like easing hospital beds or unburdening families, but they do not address the goals of the people inside them.

One day when Jim visited Alice in winter 1994, she said that she was ready to die. Jim understood her desire, and not long afterward, they arranged for a Do Not Resuscitate order to be put on record at the nursing home. One day the following April, Alice developed abdominal pains and vomited blood, but she didn’t tell anyone. The next day, they found that Alice passed away.