Being Mortal: Medicine and What Matters in the End

by Gawande, Atul

  She and Felix felt the sorrows of their losses but also the pleasures of what they still had. Although she might not have been able to remember me or others she didn’t know too well, she enjoyed company and conversation and sought both out. Moreover, she and Felix still had their own, private, decades-long conversation that had never stopped. He found great purpose in caring for her, and she, likewise, found great meaning in being there for him. The physical presence of each other gave them comfort. He dressed her, bathed her, helped feed her. When they walked, they held hands. At night, they lay in bed in each other’s arms, awake and nestling for a while, before finally drifting off to sleep. Those moments, Felix said, remained among their most cherished. He felt they knew each other, and loved each other, more than at any time in their nearly seventy years together.

  One day, however, they had an experience that revealed just how fragile their life had become. Bella developed a cold, causing fluid to accumulate in her ears. An eardrum ruptured. And with that she became totally deaf. That was all it took to sever the thread between them. With her blindness and memory problems, the hearing loss made it impossible for Felix to achieve any kind of communication with her. He tried drawing out letters on the palm of her hand but she couldn’t make them out. Even the simplest matters—getting her dressed, for instance—became a nightmare of confusion for her. Without sensory grounding, she lost track of time of day. She grew severely confused, at times delusional and agitated. He couldn’t take care of her. He became exhausted from stress and lack of sleep.

  He didn’t know what to do, but there was a system for such situations. The people at the residence proposed transferring her to a skilled nursing unit—a nursing home floor. He couldn’t bear the thought of it. No, he said. She needed to stay at home with him.

  Before the issue was forced, they got a reprieve. Two and a half weeks into the ordeal, Bella’s right eardrum mended and, although the hearing in her left ear was lost permanently, the hearing in her right ear came back.

  “Our communication is more difficult,” Felix said. “But at least it is possible.”

  I asked what he would do if the hearing in her right ear went again or if there were some other such catastrophe, and he told me he didn’t know. “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.”

  It’s the route people the world over take, and that is understandable. But it tends to backfire. Eventually, the crisis they dreaded arrived. They were walking together when, suddenly, Bella fell. He wasn’t sure what had happened. They’d been walking slowly. The ground was flat. He’d had her by the arm. But she went down in a heap and snapped the fibula in both her legs—the long, thin outer bone that runs from knee to ankle. The emergency room doctors had to cast each of her limbs to above the knee. What Felix feared most had happened. Her needs became massively more than he could handle. Bella was forced to move to the nursing home floor, where she could have round-the-clock aides and nurses looking after her.

  You might think that this would have been a relief for both Bella and Felix, lifting all kinds of burdens of physical care from them. But the experience was more complicated than that. On the one hand, the staff members were nothing but professional. They took over most of the tasks Felix had long managed so laboriously—the bathing, toileting, dressing, and all the other routine needs of a person who has become severely disabled. They freed him to spend his time as he wished, whether with Bella or on his own. But for all the staff members’ efforts, Felix and Bella could find their presence exasperating. 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. Sometimes, in exasperation, he’d give up and simply redo whatever they had done, causing conflict and resentment.

  “We were getting in each other’s way,” Felix said.

  He worried too that the unfamiliar surroundings were making Bella confused. After a few days, he decided to move her back home. He’d just have to figure out how to deal with her.

  Their apartment was only a floor away. But somehow that made all the difference. Exactly why can be hard to pinpoint. Felix still ended up hiring an around-the-clock staff of nurses and aides. 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.

  They’d sat down to lunch. She turned to him and said, “I don’t feel well.” Then she collapsed. An ambulance whisked her to the local hospital. He didn’t want to slow the medics down. So he let them go and followed after in his car. She died in the short time between her arrival and his.

  When I saw him three months later, he was still despondent. “I feel as if a part of my body is missing. I feel as if I have been dismembered,” he told me. His voice cracked and his eyes were rimmed red. 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.

  * * *

  ALICE HOBSON HAD something very much like the same dread of leaving her home. It was the one place where she felt she belonged and remained in charge of her life. But after the incident with the men who had victimized her, it was apparent that she wasn’t safe living on her own anymore. My father-in-law organized a few visits to senior living residences for her. “She didn’t care for this process,” Jim said, but she reconciled herself to it. He was determined to find a place she would like and thrive in. But it was not to be. As I watched the aftermath, I gradually began to understand the reasons why—and they were reasons that bring into question our entire system of care for the dependent and debilitated.

  Jim looked for a place that was within a reasonable driving distance for the family and within a price range she could afford with the proceeds of selling her house. He also wanted a community that offered a “continuum of care”—much like Orchard Cove, where I visited Felix and Bella—with apartments for independent living and a floor with the around-the-clock nursing capabilities that she might someday need. He came up with a variety of places for them to visit—nearer ones and farther ones, for-profit and not-for-profit.

  The place Alice ultimately chose was a high-rise senior-living complex that I will call Longwood House, a nonprofit facility affiliated with the Episcopal Church. Some of her friends from church lived there. The drive to and from Jim’s home was barely ten minutes. The community was active and thriving. To Alice and the family, it had by far the greatest appeal.

  “Most of the others were too commercial,” Jim said.

  She moved in during the fall of 1992. Her one-bedroom independent-living apartment was more spacious than I’d expected. It had a full kitchen, enough room for her dining set, and plenty of light. My mother-in law, Nan, made sure it got a fresh coat of paint and arranged for a decorator Alice had used before to help place furniture and hang pictures.

  “It means something when you can move in and see all your things in their own places—your own silver in your kitchen drawer,” Nan said.

  But when I saw Alice a few weeks after her move, she didn’t seem at all happy or adjusted. Never one to complain, she didn’t say anything angry or sad or bitter, but she was withdrawn in a way I hadn’t seen before. She remained recognizably herself, but the light had gone out from behind her eyes.

  At first I thought that this had to do w
ith the loss of her car and the freedom that came with it. When she moved into Longwood House, she’d brought her Chevy Impala and fully intended to keep driving. But on her very first day there, when she went to take the car out for some errands, it was gone. She called the police and reported it stolen. An officer arrived, took a description, and promised an investigation. A while later, Jim arrived, and, on a hunch, looked in the Giant Food store parking lot next door. There it was. She had got confused and parked in the wrong lot without realizing it. Mortified, she gave up driving for good. In one day, she lost her car as well as her home.

  But there seemed to be more to her sense of loss and unhappiness. She had a kitchen but stopped cooking. She took her meals in the Longwood House dining room with everyone else but ate little, lost weight, and didn’t seem to like having the company. She avoided organized group activities, even the ones she might have enjoyed—a sewing circle like the one she’d had at her church, a book group, gym and fitness classes, trips to the Kennedy Center. The community offered opportunities to organize activities of your own if you didn’t like what was on offer. But she stuck to herself. We thought she was depressed. Jim and Nan took her to see a doctor, who put her on medication. It didn’t help. Somewhere along the seven-mile drive between the house she’d given up on Greencastle Street and Longwood House, her life fundamentally changed in ways she did not want but could do nothing about.

  * * *

  THE IDEA OF being unhappy in a place as comfortable as Longwood House would have seemed laughable at one time. In 1913, Mabel Nassau, a Columbia University graduate student, conducted a neighborhood study of the living conditions of one hundred elderly people in Greenwich Village—sixty-five women and thirty-five men. In this era before pensions and Social Security, all were poor. Only twenty-seven were able to support themselves—living off savings, taking in lodgers, or doing odd jobs like selling newspapers, cleaning homes, mending umbrellas. Most were too ill or debilitated to work.

  One woman, for instance, whom Nassau called Mrs. C., was a sixty-two-year-old widow who’d made just enough as a domestic servant to afford a small back room with an oil stove in a rooming house. Illness had recently ended her work, however, and she now had severe leg swelling with varicose veins that left her bedbound. Miss S. was “unusually sick” and had a seventy-two-year-old brother with diabetes who, in this era before insulin treatment, was fast becoming crippled and emaciated as the disease killed him. Mr. M. was a sixty-seven-year-old Irish former longshoreman who’d been left disabled by a paralytic stroke. A large number had become simply “feeble,” by which Nassau seemed to mean that they were too senile to manage for themselves.

  Unless family could take such people in, they had virtually no options left except a poorhouse, or almshouse, as it was often called. These institutions went back centuries in Europe and the United States. If you were elderly and in need of help but did not have a child or independent wealth to fall back on, a poorhouse was your only source of shelter. Poorhouses were grim, odious places to be incarcerated—and that was the telling term used at the time. They housed poor of all types—elderly paupers, out-of-luck immigrants, young drunks, the mentally ill—and their function was to put the “inmates” to work for their presumed intemperance and moral turpitude. Supervisors usually treated elderly paupers leniently in work assignments, but they were inmates like the rest. Husbands and wives were separated. Basic physical care was lacking. Filth and dilapidation were the norm.

  A 1912 report from the Illinois State Charities Commission described one county’s poorhouse as “unfit to decently house animals.” The men and women lived without any attempt at classification by age or needs in bare ten-by-twelve-foot rooms infested with bedbugs. “Rats and mice overrun the place.… Flies swarm [the] food.… There are no bathtubs.” A 1909 Virginia report described elderly people dying untended, receiving inadequate nutrition and care, and contracting tuberculosis from uncontrolled contagion. Funds were chronically inadequate for disabled care. In one case, the report noted, a warden, faced with a woman who tended to wander off and no staff to mind her, made her carry a twenty-eight-pound ball and chain.

  Nothing provoked greater terror for the aged than the prospect of such institutions. Nonetheless, by the 1920s and 1930s, when Alice and Richmond Hobson were young, two-thirds of poorhouse residents were elderly. Gilded Age prosperity had sparked embarrassment about these conditions. Then the Great Depression sparked a nationwide protest movement. Elderly middle-class people who’d worked and saved all their lives found their savings wiped out. In 1935, with the passage of Social Security, the United States joined Europe in creating a system of national pensions. Suddenly a widow’s future was secure, and retirement, once the exclusive provenance of the rich, became a mass phenomenon.

  In time, poorhouses passed from memory in the industrialized world, but they persist elsewhere. In developing countries, they have become common, because economic growth is breaking up the extended family without yet producing the affluence to protect the elderly from poverty and neglect. In India, I have noticed that the existence of such places is often unacknowledged, but on a recent visit to New Delhi I readily found examples. Their appearance seemed straight out of Dickens—or those old state reports.

  The Guru Vishram Vridh ashram, for instance, is a charity-run old age home in a slum on the south edge of New Delhi, where open sewage ran in the streets and emaciated dogs rummaged in piles of trash. The home is a converted warehouse—a vast, open room with scores of disabled elderly people on cots and floor mattresses pushed up against one another like a large sheet of postage stamps. The proprietor, G. P. Bhagat, who appeared to be in his forties, was clean-cut and professional looking, with a cell phone that rang every two minutes. He said he’d been called by God to open the place eight years before and subsisted on donations. He said he never turned anyone away as long as he had an open bed. About half of the residents were deposited there by retirement homes and hospitals if they couldn’t pay their bills. The other half were found in the streets and parks by volunteers or the police. All suffered from a combination of debility and poverty.

  The place had more than a hundred people when I visited. The youngest was sixty and the oldest past a century. Those on the first floor had only “moderate” needs. Among them, I met a Sikh man crawling awkwardly along the ground, in a squat, like a slow-moving frog—hands-feet, hands-feet, hands-feet. He said he used to own an electrical shop in an upscale section of New Delhi. His daughter became an accountant, his son a software engineer. Two years ago something happened to him—he described chest pain and what sounded like a series of strokes. He spent two and a half months in the hospital, paralyzed. The bills rose. His family stopped visiting. Eventually the hospital dropped him off here. Bhagat said he sent a message to the family through the police saying the man would like to come home. They denied knowing him.

  Up a narrow staircase was the second-floor ward for patients with dementia and other severe disabilities. An old man stood by a wall wailing out-of-tune songs at the top of his lungs. Next to him a woman with white, cataractal eyes muttered to herself. Several staff members worked their way through the residents, feeding them and keeping them clean the best they could. The din and the smell of urine were overpowering. I tried to talk to a couple of the residents through my translator, but they were too confused to answer questions. A deaf and blind woman lying on a mattress nearby was shouting a few words over and over again. I asked the translator what she was saying. The translator shook her head—the words made no sense—and then she bolted down the stairs. It was too much for her. It was as close to a vision of hell as I’ve ever experienced.

  “These people are on the last stage of their journey,” Bhagat said, looking out upon the mass of bodies. “But I can’t provide the kind of facility they really require.”

  In the course of Alice’s lifetime, the industrialized world’s elderly have escaped the threat of such a fate. Prosperity has enabled even the poo
r to expect nursing homes with square meals, professional health services, physical therapy, and bingo. They’ve eased debility and old age for millions and made proper care and safety a norm to an extent that the inmates of poorhouses could not imagine. Yet still, most consider modern old age homes frightening, desolate, even odious places to spend the last phase of one’s life. We need and desire something more.

  * * *

  LONGWOOD HOUSE SEEMINGLY had everything going for it. The facility was up to date, with top ratings for safety and care. Alice’s quarters enabled her to have the comforts of her old home in a safer, more manageable situation. The arrangements were tremendously reassuring for her children and extended family. But they weren’t for Alice. She never got used to being there or accepted it. No matter what the staff or our family did for her, she grew only more miserable.

  I asked her about this. But she couldn’t put her finger on what made her unhappy. The most common complaint she made is one I’ve heard often from nursing home residents I’ve met: “It just isn’t home.” To Alice, Longwood House was a mere facsimile of home. And having a place that genuinely feels like your home can seem as essential to a person as water to a fish.

  A few years ago, I read about the case of Harry Truman, an eighty-three-year-old man who, in March 1980, refused to budge from his home at the foot of Mount Saint Helens near Olympia, Washington, when the volcano began to steam and rumble. A former World War I pilot and Prohibition-era bootlegger, he’d owned his lodge on Spirit Lake for more than half a century. Five years earlier, he’d been widowed. So now it was just him and his sixteen cats on his fifty-four acres of property beneath the mountain. Three years earlier, he’d fallen off the lodge roof shoveling snow and broken his leg. The doctor told him he was “a damn fool” to be working up there at his age.