Being Mortal: Medicine and What Matters in the End (9 page)

“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 poor 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.

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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.

“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.

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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 hospitals 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.

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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.