Being Mortal: Medicine and What Matters in the End

by Gawande, Atul

  “Damn it!” Truman shot back. “I’m eighty years old and at eighty, I have the right to make up my mind and do what I want to do.”

  As eruption threatened, the authorities told everyone living in the vicinity to clear out. But Truman wasn’t going anywhere. For more than two months, the volcano smoldered. Authorities extended the evacuation zone to ten miles around the mountain. Truman stubbornly remained. He didn’t believe the scientists, with their uncertain and sometimes conflicting reports. He worried his lodge would be looted and vandalized, as another lodge on Spirit Lake was. And regardless, this home was his life.

  “If this place is gonna go, I want to go with it,” he said. “’Cause if I lost it, it would kill me in a week anyway.” He attracted reporters with his straight-talking, curmudgeonly way, holding forth with a green John Deere cap on his head and a tall glass of bourbon and Coke in his hand. The local police thought about arresting him for his own good but decided not to, given his age and the bad publicity they’d have to endure. They offered to bring him out every chance they got. He steadfastly refused. He told a friend, “If I die tomorrow, I’ve had a damn good life. I’ve done everything I could do, and I’ve done everything I ever wanted to do.”

  The blast came at 8:40 a.m. on May 18, 1980, with the force of an atomic bomb. The entire lake disappeared under the massive lava flow, burying Truman and his cats and his home with it. In the aftermath, he became an icon—the old man who had stayed in his house, taken his chances, and lived life on his own terms in an era when that possibility seemed to have all but disappeared. The people of nearby Castlerock constructed a memorial to him at the town’s entrance that still stands, and there was a television movie starring Art Carney.

  Alice wasn’t facing a volcano, but she might as well have been. Giving up her home on Greencastle Street meant giving up the life she had built for herself over decades. The things that made Longwood House so much safer and more manageable than the house were precisely what made it hard for her to endure. Her apartment might have been called “independent living,” but it involved the imposition of more structure and supervision than she’d ever had to deal with before. Aides watched her diet. Nurses monitored her health. They observed her growing unsteadiness and made her use a walker. This was reassuring for Alice’s children, but she didn’t like being nannied or controlled. And the regulation of her life only increased with time. When the staff became concerned that she was missing doses of her medications, they informed her that unless she kept her medications with the nurses and came down to their station twice a day to take them under direct supervision, she would have to move out of independent living to the nursing home wing. Jim and Nan hired a part-time aide named Mary to help Alice comply, to give her some company, and to stave off the day she would have to transfer. She liked Mary. But having her hanging around the apartment for hours on end, often with little to do, only made the situation more depressing.

  For Alice, it must have felt as if she had crossed into an alien land that she would never be allowed to leave. The border guards were friendly and cheerful enough. They promised her a nice place to live where she’d be well taken care of. But she didn’t really want anyone to take care of her; she just wanted to live a life of her own. And those cheerful border guards had taken her keys and her passport. With her home went her control.

  People saw Harry Truman as a hero. There was never going to be a Longwood House for Harry Truman of Spirit Lake, and Alice Hobson of Arlington, Virginia, didn’t want there to be one for her either.

  * * *

  HOW DID WE wind up in a world where the only choices for the very old seem to be either going down with the volcano or yielding all control over our lives? To understand what happened, you have to trace the story of how we replaced the poorhouse with the kinds of places we have today—and it turns out to be a medical story. Our old age homes didn’t develop out of a desire to give the frail elderly better lives than they’d had in those dismal places. We didn’t look around and say to ourselves, “You know, there’s this phase of people’s lives in which they can’t really cope on their own, and we ought to find a way to make it manageable.” No, instead we said, “This looks like a medical problem. Let’s put these people in the hospital. Maybe the doctors can figure something out.” The modern nursing home developed from there, more or less by accident.

  In the middle part of the twentieth century, medicine was undergoing a rapid and historic transformation. Before that time, if you fell seriously ill, doctors usually tended to you in your own bed. The function of hospitals was mainly custodial. As the great physician-writer Lewis Thomas observed, describing his internship at Boston City Hospital in 1937, “If being in a hospital bed made a difference, it was mostly the difference produced by warmth, shelter, and food, and attentive, friendly care, and the matchless skill of the nurses in providing these things. Whether you survived or not depended on the natural history of the disease itself. Medicine made little or no difference.”

  From World War II onward, the picture shifted radically. Sulfa, penicillin, and then numerous other antibiotics became available for treating infections. Drugs to control blood pressure and treat hormonal imbalances were discovered. Breakthroughs in everything from heart surgery to artificial respirators to kidney transplantation became commonplace. Doctors became heroes, and the hospital transformed from a symbol of sickness and despondency to a place of hope and cure.

  Communities could not build hospitals fast enough. In America, in 1946, Congress passed the Hill-Burton Act, which provided massive amounts of government funds for hospital construction. Two decades later the program had financed more than nine thousand new medical facilities across the country. For the first time, most people had a hospital nearby, and this became true across the industrialized world.

  The magnitude of this transformation is impossible to overstate. For most of our species’ existence, people were fundamentally on their own with the sufferings of their body. They depended on nature and chance and the ministry of family and religion. Medicine was just another a tool you could try, no different from a healing ritual or a family remedy and no more effective. But as medicine became more powerful, the modern hospital brought a different idea. Here was a place where you could go saying, “Cure me.” You checked in and gave over every part of your life to doctors and nurses: what you wore, what you ate, what went into the different parts of your body and when. It wasn’t always pleasant, but, for a rapidly expanding range of problems, it produced unprecedented results. Hospitals learned how to eliminate infections, remove cancerous tumors, reconstruct shattered bones. They could fix hernias and heart valves and hemorrhaging stomach ulcers. They became the normal place for people to go with their bodily troubles, including the elderly.

  Meanwhile, policy planners had assumed that establishing a pension system would end poorhouses, but the problem did not go away. In America, in the years following the passage of the Social Security Act of 1935, the number of elderly in poorhouses refused to drop. States moved to close them but found they could not. The reason old people wound up in poorhouses, it turned out, was not just that they didn’t have money to pay for a home. They were there because they’d become too frail, sick, feeble, senile, or broken down to take care of themselves anymore, and they had nowhere else to turn for help. Pensions provided a way of allowing the elderly to manage independently as long as possible in their retirement years. But pensions hadn’t provided a plan for that final, infirm stage of mortal life.

  As hospitals sprang up, they became a comparatively more attractive place to put the infirm. That was finally what brought the poorhouses to empty out. One by one through the 1950s, the poorhouses closed, responsibility for those who’d been classified as elderly “paupers” was transferred to departments of welfare, and the sick and disabled were put in hospitals. But hospitals couldn’t solve the debilities of chronic illness and advancing age, and they began to fill up with people who had nowhere to go. The hos
pitals lobbied the government for help, and in 1954 lawmakers provided funding to enable them to build separate custodial units for patients needing an extended period of “recovery.” That was the beginning of the modern nursing home. They were never created to help people facing dependency in old age. They were created to clear out hospital beds—which is why they were called “nursing” homes.

  This has been the persistent pattern of how modern society has dealt with old age. The systems we’ve devised were almost always designed to solve some other problem. As one scholar put it, describing the history of nursing homes from the perspective of the elderly “is like describing the opening of the American West from the perspective of the mules; they were certainly there, and the epochal events were certainly critical to the mules, but hardly anyone was paying very much attention to them at the time.”

  The next major spur to American nursing home growth was similarly unintentional. When Medicare, America’s health insurance system for the aged and disabled, passed in 1965, the law specified that it would pay only for care in facilities that met basic health and safety standards. A significant number of hospitals, especially in the South, couldn’t meet those standards. Policy makers feared a major backlash from elderly patients with Medicare cards being turned away from their local hospital. So the Bureau of Health Insurance invented the concept of “substantial compliance”—if the hospital came “close” to meeting the standards and aimed to improve, it would be approved. The category was a complete fabrication with no legal basis, though it solved a problem without major harm—virtually all of the hospitals did improve. But the bureau’s ruling gave an opening to nursing homes, few of which met even minimum federal standards such as having a nurse on-site or fire protections in place. Thousands of them, asserting that they were in “substantial compliance,” were approved, and the number of nursing homes exploded—by 1970, some thirteen thousand of them had been built—and so did reports of neglect and mistreatment. That year in Marietta, Ohio, the next county over from my hometown, a nursing home fire trapped and killed thirty-two residents. In Baltimore, a Salmonella epidemic in a nursing home claimed thirty-six lives.

  With time, regulations were tightened. The health and safety problems were finally addressed. Nursing homes are no longer firetraps. But the core problem persists. This place where half of us will typically spend a year or more of our lives was never truly made for us.

  * * *

  ONE MORNING IN late 1993, Alice had a fall while alone in her apartment. She wasn’t found until many hours later when Nan, who was puzzled at not being able to reach her by phone, sent Jim to investigate. He discovered Alice laid out beside the living room couch, nearly unconscious. At the hospital, the medical team gave her intravenous fluids and a series of tests and X-rays. They found no broken bones or head injury. Everything seemed okay. But they also found no explanation for her fall beyond general frailty.

  When she returned to Longwood House, she was encouraged to move to the skilled nursing floor. She resisted vehemently. She did not want to go. The staff relented. They checked her more frequently. Mary increased the hours she spent looking after her. But before long, Jim got a call that Alice had fallen again. It was a bad fall, they said. She’d been taken by ambulance to a hospital. By the time he got there, she had already been wheeled into surgery. X-rays showed she’d broken her hip—the top of her femur had snapped like a glass stem. The orthopedic surgeons repaired the fracture with a couple of long metal nails.

  This time, she came back to Longwood House in a wheelchair and needed help with virtually all of her everyday activities—using the toilet, bathing, dressing. Alice was left with no choice but to move into the skilled nursing unit. The hope, they told her, was that, with physical therapy, she’d learn to walk again and return to her apartment. But she never did. From then on, she was confined to a wheelchair and the rigidity of nursing home life.

  All privacy and control were gone. She was put in hospital clothes most of the time. She woke when they told her, bathed and dressed when they told her, ate when they told her. She lived with whomever they said she had to. There was a succession of roommates, never chosen with her input and all with cognitive impairments. Some were quiet. One kept her up at night. She felt incarcerated, like she was in prison for being old.

  The sociologist Erving Goffman noted the likeness between prisons and nursing homes half a century ago in his book Asylums. They were, along with military training camps, orphanages, and mental hospitals, “total institutions”—places largely cut off from wider society. “A basic social arrangement in modern society is that the individual tends to sleep, play, and work in different places, with different co-participants, under different authorities, and without an over-all rational plan,” he wrote. By contrast, total institutions break down the barriers separating our spheres of life in specific ways that he enumerated:

  First, all aspects of life are conducted in the same place and under the same central authority. Second, each phase of the member’s daily activity is carried on in the immediate company of a large batch of others, all of whom are treated alike and required to do the same thing together. Third, all phases of the day’s activities are tightly scheduled, with one activity leading at a prearranged time into the next, the whole sequence of activities being imposed from above by a system of explicit formal rulings and a body of officials. Finally, the various enforced activities are brought together into a single plan purportedly designed to fulfill the official aims of the institution.

  In a nursing home, the official aim of the institution is caring, but the idea of caring that had evolved didn’t bear any meaningful resemblance to what Alice would call living. She was hardly alone in feeling this way. I once met an eighty-nine-year-old woman who had, of her own volition, checked herself into a Boston nursing home. Usually, it’s the children who push for a change, but in this case she was the one who did. She had congestive heart failure, disabling arthritis, and after a series of falls she felt she had little choice but to leave her condominium in Delray Beach, Florida. “I fell twice in one week, and I told my daughter I don’t belong at home anymore,” she said.

  She picked the facility herself. It had excellent ratings and nice staff, and her daughter lived nearby. She had moved in the month before I met her. She told me she was glad to be in a safe place—if there’s anything a decent nursing home is built for, it is safety. But she was wretchedly unhappy.

  The trouble was that she expected more from life than safety. “I know I can’t do what I used to,” she said, “but this feels like a hospital, not a home.”

  It is a near-universal reality. Nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight—important medical goals, to be sure, but they are means, not ends. The woman had left an airy apartment she furnished herself for a small beige hospital-like room with a stranger for a roommate. Her belongings were stripped down to what she could fit into the one cupboard and shelf they gave her. Basic matters, like when she went to bed, woke up, dressed, and ate, were subject to the rigid schedule of institutional life. She couldn’t have her own furniture or a cocktail before dinner, because it wasn’t safe.

  There was so much more she felt she could do in her life. “I want to be helpful, play a role,” she said. She used to make her own jewelry, volunteer at the library. Now, her main activities were bingo, DVD movies, and other forms of passive group entertainment. The things she missed most, she told me, were her friendships, privacy, and a purpose to her days. Nursing homes have come a long way from the firetrap warehouses of neglect they used to be. But it seems we’ve succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible.

  The elderly themselves have not completely succumbed, however. Many resist. In every nursing home and assisted living facility, battles rage over the priorities and values people are supposed to live by. Some, like Alice, resist mainly through noncooperation—
refusing the scheduled activities or medications. They are the ones we call “feisty.” It’s a favorite word for the aged. Outside a nursing home, we usually apply the adjective with a degree of admiration. We like the tenacious, sometimes cantankerous ways in which the Harry Trumans of the world assert themselves. But inside, when we say someone is feisty, we mean it in a less complimentary way. Nursing home staff like, and approve of, residents who are “fighters” and show “dignity and self-esteem”—until these traits interfere with the staff’s priorities for them. Then they are “feisty.”

  Talk to the staff members and you will hear about the daily skirmishes. A woman calls for help to the bathroom “every five minutes.” So they put her on a set schedule, taking her to the bathroom once every couple hours, when it fits into their rounds. But she doesn’t go according to schedule, instead wetting her bed ten minutes after a bathroom trip. So now they put her in a diaper. Another resident refuses to use his walker and takes unauthorized, unaccompanied walks. A third sneaks cigarettes and alcohol.

  Food is the Hundred Years’ War. A woman with severe Parkinson’s disease keeps violating her pureed diet restriction, stealing food from other residents that could cause her to choke. A man with Alzheimer’s disease hoards snacks in his room, violating house rules. A diabetic is found eating clandestine sugar cookies and pudding, knocking his blood sugar levels off his target. Who knew you could rebel just by eating a cookie?

  In the horrible places, the battle for control escalates until you get tied down or locked into your Geri-chair or chemically subdued with psychotropic medications. In the nice ones, a staff member cracks a joke, wags an affectionate finger, and takes your brownie stash away. In almost none does anyone sit down with you and try to figure out what living a life really means to you under the circumstances, let alone help you make a home where that life becomes possible.