Being Mortal: Medicine and What Matters in the End

by Gawande, Atul

  This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.

  * * *

  ONE DAY WHEN Jim visited Alice, she whispered something in his ear. It was winter 1994, a few weeks after her hip fracture and admission to the skilled nursing unit and two years since she’d begun living at Longwood House. He’d wheeled her from her room for a stroll around the complex. They found a comfortable place in the lobby and stopped to sit for a while. They were both quiet people, and they’d been content to sit there silently, watching people come and go. That was when she leaned toward him in her wheelchair. She whispered just two words.

  “I’m ready,” she said.

  He looked at her. She looked at him. And he understood. She was ready to die.

  “Okay, Mom,” Jim said.

  It saddened him. He wasn’t sure what to do about it. But not long afterward, the two of them arranged for a Do Not Resuscitate order to be put on record at the nursing home. If her heart or her breathing stopped, they would not attempt to rescue her from death. They would not do chest compressions or shock her or put a breathing tube down her throat. They would let her go.

  Months passed. She waited and endured. One April night, she developed abdominal pains. She mentioned them briefly to a nurse, then decided to say nothing more. Later, she vomited blood. She alerted no one. She didn’t press the call button or say anything to her roommate. She stayed in bed, silent. The next morning, when the aides came to wake the residents on her floor, they found she was gone.

  4 • Assistance

  You’d think people would have rebelled. You’d think we would have burned the nursing homes to the ground. We haven’t, though, because we find it hard to believe that anything better is possible for when we are so weakened and frail that managing without help is no longer feasible. We haven’t had the imagination for it.

  In the main, the family has remained the primary alternative. Your chances of avoiding the nursing home are directly related to the number of children you have, and, according to what little research has been done, having at least one daughter seems to be crucial to the amount of help you will receive. But our greater longevity has coincided with the increased dependence of families on dual incomes, with results that are painful and unhappy for all involved.

  Lou Sanders was eighty-eight years old when he and his daughter, Shelley, were confronted with a difficult decision about the future. Up to that point he had managed well. He’d never demanded much from life beyond a few modest pleasures and the company of family and friends. The son of Russian-speaking Jewish immigrants from Ukraine, he’d grown up in Dorchester, a working-class neighborhood in Boston. In World War II, he served in the air force in the South Pacific, and after returning he married and settled in Lawrence, an industrial town outside Boston. He and his wife, Ruth, had a son and a daughter, and he went into the appliance business with a brother-in-law. Lou was able to buy the family a three-bedroom house in a nice neighborhood and give his children college educations. He and Ruth encountered their share of life’s troubles. Their son, for instance, had serious problems with drugs, alcohol, and money and proved to have bipolar disorder. In his forties, he committed suicide. And the appliance business, which had done well for years, went belly-up when the chain stores came along. At fifty years old, Lou found himself having to start over. Nonetheless, despite his age, lack of experience, and lack of a college education, he was given a new chance as an electronic technician at Raytheon and ended up spending the remainder of his career there. He retired at sixty-seven, having worked the additional two years to get 3 percent extra on his Raytheon pension.

  Meanwhile, Ruth developed health issues. A lifelong smoker, she was diagnosed with lung cancer, survived it, and kept smoking (which Lou couldn’t understand). Three years after Lou retired, she had a stroke that she never wholly recovered from. She became increasingly dependent on him—for transportation, for shopping, for managing the house, for everything. Then she developed a lump under her arm, and a biopsy revealed metastatic cancer. She died in October 1994, at the age of seventy-three. Lou, at seventy-six, became a widower.

  Shelley worried for him. She didn’t know how he would get along without Ruth. Caring for Ruth through her decline, however, had forced him to learn to fend for himself, and, although he mourned, he gradually found that he didn’t mind being on his own. For the next decade, he led a happy, satisfying life. He had a simple routine. He rose early in the morning, fixed himself breakfast, and read the newspaper. He’d take a walk, buy his groceries for the day at the supermarket, and come home to make his lunch. Later in the afternoon, he would go to the town library. It was pretty, light-filled, and quiet, and he’d spend a couple hours reading his favorite magazines and newspapers or burrowing into a thriller. Returning home, he’d read a book he’d checked out or watch a movie or listen to music. A couple of nights a week, he’d play cribbage with one of his neighbors in the building.

  “My father developed really interesting friendships,” Shelley said. “He could make friends with anyone.”

  One of Lou’s new companions was an Iranian clerk at a video store in town where Lou often stopped in. The clerk, named Bob, was in his twenties. Lou would perch on a bar stool that Bob set up by the counter for him, and the two of them—the young Iranian and the old Jew—could hang out for hours. They became such good pals that they even traveled to Las Vegas together once. Lou loved going to casinos and made trips with an assortment of friends.

  Then, in 2003, at the age of eighty-five, he had a heart attack. He proved lucky. An ambulance sped him to the hospital, and the doctors were able to stent open his blocked coronary artery in time. After a couple weeks in a cardiac rehabilitation center, it was as if nothing had happened at all. Three years later, however, he had his first fall—that harbinger of unstoppable trouble. Shelley noticed that he had developed a tremor, and a neurologist diagnosed him with Parkinson’s disease. Medications controlled the symptoms, but he also began having trouble with his memory. Shelley observed that when he told a long story he sometimes lost the thread of what he was saying. Other times, he seemed confused about something they’d just spoken about. Most of the time he seemed fine, even exceptional for a man of eighty-eight years. He still drove. He still beat everyone at cribbage. He still looked after his home and managed his finances by himself. But then he had another bad fall, and it scared him. He suddenly felt the weight of all the changes that had been accumulating. He told Shelley he was afraid he might fall one day, hit his head, and die. It wasn’t dying that scared him, he said, but the possibility of dying alone.

  She asked him what he would think about looking at retirement homes. He wanted no part of it. He’d seen friends in those sorts of places.

  “They’re full of old people,” he said. It was not the way he wanted to live. He made Shelley promise to never put him in such a place.

  Still, he could no longer manage on his own. The only choice left for him was to move in with her and her family. So that’s what Shelley arranged for him to do.

  I asked her and her husband, Tom, how they had felt about this. Good, they both said. “I didn’t feel comfortable with him living independently anymore,” Shelley said, and Tom agreed. Lou’d had a heart attack. He was going on ninety. This was the least they could do for him. And, they admitted thinking, how long were they really going to have with him, anyway?

  * * *

  TOM AND SHELLEY lived comfortably in a modest colonial in North Reading, a Boston suburb, but never completely so. Shelley worked as a personal assistant. Tom had just spent a year and half unemployed after a layoff. Now he worked for a
travel company for less than he used to earn. With two teenage children in the house, there was no obvious space for Lou. But Shelley and Tom converted their living room into a bedroom, moving in a bed, an easy chair, Lou’s armoire, and a flat-screen television. The rest of his furniture was sold off or put in storage.

  Cohabitation required adjustment. Everyone soon discovered the reasons that generations prefer living apart. Parent and child traded roles, and Lou didn’t like not being the master of his home. He also found himself lonelier than he expected. On their suburban cul-de-sac, he had no company for long stretches of the day and nowhere nearby to walk to—no library or video store or supermarket.

  Shelley tried to get him involved in a day program for senior citizens. She took him to a breakfast they had. He didn’t like it one bit. She discovered they made occasional trips to Foxwoods, a casino two hours from Boston. It wasn’t his favorite, but he agreed to go. She was thrilled. She hoped he’d make friends.

  She told me, “It felt like I was putting my child on the bus”—which was probably exactly what he disliked about it. “I remember saying, ‘Hi, everyone. This is Lou. This is his first time so I hope you will all be friends with him.’” When he came back, she asked him if he’d made any friends. No, he said. He just gambled by himself.

  Gradually, though, he found ways to adapt. Shelley and Tom had a Chinese Shar-Pei named Beijing, and Lou and the dog became devoted companions. She slept on his bed with him at night and sat with him when he read or watched TV. He took her on walks. If she was in his recliner, he’d go get another chair from the kitchen rather than disturb her.

  He found human companions, too. He took to greeting the mailman each day, and they became friends. The mailman played cribbage, and he started coming over every Monday to play on his lunch hour. Shelley hired a young man named Dave to spend time with Lou, as well. It was the sort of preengineered playdate that is always doomed to failure, but—go figure—they hit it off. Lou played cribbage with Dave, too, and he came over a couple afternoons a week to hang out.

  Lou settled in and imagined that this would be how he’d live out the rest of his days. But while he managed to adjust, Shelley found the situation steadily more impossible. She was working, looking after the home, and worrying about her kids, who had their own struggles as they made their way through high school. And then she had to look after her dear but frighteningly frail and dependent father. It was an enormous burden. The falls, for example, never stopped. He’d be in his room or in the bathroom or getting up from the kitchen table, when he’d suddenly pitch off his feet like a tree falling. In one year, he had four ambulance rides to the emergency room. The doctors stopped his Parkinson’s medication, thinking that might be the culprit. But that only worsened his tremors and made him yet more unsteady on his feet. Eventually, he was diagnosed with postural hypotension—a condition of old age in which the body loses its ability to maintain adequate blood pressure for brain function during changes in position like standing up from sitting. The only thing the doctors could do was to tell Shelley to be more careful with him.

  At night, she discovered, Lou had night terrors. He dreamt of war. He’d never been in hand-to-hand combat, but in his dreams an enemy would be attacking him with a sword, stabbing him or chopping his arm off. They were vivid and terrifying. He’d thrash and shout and hit the wall next to him. The family could hear him across the house: “Nooo!” “What do you mean?” “You son of a bitch!”

  “We’d never heard him say anything like that before,” Shelley said. He kept the family up many nights.

  The demands on Shelley only mounted. At ninety, Lou no longer had the balance and dexterity required to bathe himself. On the advice of a senior services program, Shelley installed bathroom grab bars, a sitting-height toilet, and a shower chair, but they weren’t enough, so she arranged for a home health aide to help with washing and other tasks. But Lou didn’t want showers in the daytime when an aide could help. He wanted baths in the nighttime, which required Shelley’s help. So every day, this became her job, too.

  It was the same with changing his clothes when he had wet himself. He had prostate issues, and, although the urologist gave him medicines for it, he still had problems with dribbles and leaks and not making it to the bathroom in time. Shelley tried to get him to wear protective disposable underwear, but he wouldn’t do it. “They’re diapers,” he said.

  The burdens were large and small. He didn’t like the food she made for the rest of her family. He never complained. He just wouldn’t eat. So she had to start making separate meals for him. He was hard of hearing and would blast the television in his room at brain-broiling volume. They’d shut his door, but he didn’t like that—the dog couldn’t get in and out. Shelley was ready to throttle him. Eventually, she found wireless earbuds called “TV ears.” Lou hated them, but she made him use them. “They were a lifesaver,” Shelley said. I wasn’t sure if she meant that it was her life that they saved or his.

  Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial. Lou was on numerous medications, which had to be tracked and sorted and refilled. He had a small platoon of specialists he had to visit—at times, nearly weekly—and they were forever scheduling laboratory tests, imaging studies, and visits to other specialists. He had an electronic alert system for falls, which had to be tested monthly. And there was almost no help for Shelley. The burdens for today’s caregiver have actually increased from what they would have been a century ago. Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner. Last-minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home. Just to take an overnight trip with her family, she had to hire someone to stay with Lou, and even then a crisis would scuttle the plans. One time, she went on a Caribbean vacation with her husband and kids but had to return after just three days. Lou needed her.

  She felt her sanity slipping. She wanted to be a good daughter. She wanted her father to be safe, and she wanted him to be happy. But she wanted a manageable life, too. One night she asked her husband, should we find a place for him? She felt ashamed just voicing the thought. It’d break her promise to her father.

  Tom wasn’t much help. “You’ll manage,” he told her. “How much more time is there?”

  Lots, it would turn out. “I was being insensitive to her,” Tom told me, looking back three years later. Shelley was reaching the breaking point.

  She had a cousin who ran an elder care organization. He recommended a nurse to come out to assess Lou and talk to him, so that Shelley didn’t have to be the bad guy. The nurse told Lou that given his increased needs, he needed more help than he could get at home. He shouldn’t be so alone through the day, she said.

  He looked at Shelley imploringly, and she knew what he was thinking. Couldn’t she just stop working and be there for him? The question felt like a dagger in her chest. Shelley teared up and told him that she couldn’t provide the care he needed—not emotionally and not financially. Reluctantly, he agreed to let her take him to look for a place. It seemed as if, once aging led to debility, it was impossible for anyone to be happy.

  * * *

  THE PLACE THEY decided to visit wasn’t a nursing home but an assisted living facility. Today, assisted living is regarded as something of an intermediate station between independent living and life in a nursing home. But when Keren Brown Wilson, one of the originators of the concept, built her first assisted living home for the aged in Oregon in the 1980s, she was trying to create a place that would eliminate the need for nursing homes altogether. She’d wanted to build an alternative, not a halfway station. 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. In her head she had a vision of how to make a better life achievable. And that vision had been formed by the same experiences—of reluctant dependency and agonized responsibility—that Lou and Shelley were grappling with.

  The bookish daughter of a West Virginia coal miner and a washerwoman, neither of whom were schooled past eighth grade, Wilson was an unlikely radical. When she was in grade school, her father died. Then, when she was nineteen years old, her mother, Jessie, suffered a devastating stroke. Jessie was just fifty-five years old. The stroke left her permanently paralyzed down one side of her body. She could no longer walk or stand. She couldn’t lift her arm. Her face sagged. Her speech slurred. Although her intelligence and perception were unaffected, she couldn’t bathe herself, cook a meal, manage the toilet, or do her own laundry—let alone any kind of paid work. She needed help. But Wilson was just a college student. She had no income, a tiny apartment she shared with a roommate, and no way to take care of her mother. She had siblings but they were little better equipped. There was nowhere for Jessie but a nursing home. Wilson arranged for one near where she was in college. It seemed a safe and friendly place. But Jessie never stopped asking her daughter to “Take me home.”

  “Get me out of here,” she said over and over again.

  Wilson became interested in policy for the aged. When she graduated, she got a job working in senior services for the state of Washington. As the years passed, Jessie shifted through a series of nursing homes, near one or another of her children. She didn’t like a single one of those places. Meanwhile, Wilson got married, and her husband, a sociologist, encouraged her to continue with her schooling. She was accepted as a PhD student in gerontology at Portland State University in Oregon. When she told her mother she would be studying the science of aging, Jessie asked her a question that Wilson says changed her life: “Why don’t you do something to help people like me?”