Being Mortal: Medicine and What Matters in the End (16 page)

Royce called this dedication to a cause beyond oneself loyalty. He regarded it as the opposite of individualism. The individualist puts self-interest first, seeing his own pain, pleasure, and existence as his greatest concern. For an individualist, loyalty to causes that have nothing to do with self-interest is strange. When such loyalty encourages self-sacrifice, it can even be alarming—a mistaken and irrational tendency that leaves people open to the exploitation of tyrants. Nothing could matter more than self-interest, and because when you die you are gone, self-sacrifice makes no sense.

Royce had no sympathy for the individualist view. “The selfish we had always with us,” he wrote. “But the divine right to be selfish was never more ingeniously defended.” In fact, he argued, human beings
need
loyalty. It does not necessarily produce happiness, and can even be painful, but we all require devotion to something more than ourselves for our lives to be endurable. Without it, we have only our desires to guide us, and they are fleeting, capricious, and insatiable. They provide, ultimately, only torment. “By nature, I am a sort of meeting place of countless streams of ancestral tendency. From moment to moment … I am a collection of impulses,” Royce observed. “We cannot see the inner light. Let us try the outer one.”

And we do. Consider the fact that we care deeply about what happens to the world after we die. If self-interest were the primary source of meaning in life, then it wouldn’t matter to people if an hour after their death everyone they know were to be wiped from the face of the earth. Yet it matters greatly to most people. We feel that such an occurrence would make our lives meaningless.

The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror. But if you do, it is not. Loyalty, said Royce, “solves the paradox of our ordinary existence by showing us outside of ourselves the cause which is to be served, and inside of ourselves the will which delights to do this service, and which is not thwarted but enriched and expressed in such service.” In more recent times, psychologists have used the term “transcendence” for a version of this idea. Above the level of self-actualization in Maslow’s hierarchy of needs, they suggest the existence in people of a transcendent desire to see and help other beings achieve their potential.

As our time winds down, we all seek comfort in simple pleasures—companionship, everyday routines, the taste of good food, the warmth of sunlight on our faces. We become less interested in the rewards of achieving and accumulating, and more interested in the rewards of simply being. Yet while we may feel less ambitious, we also become concerned for our legacy. And we have a deep need to identify purposes outside ourselves that make living feel meaningful and worthwhile.

With the animals and children and plants Bill Thomas helped usher into Chase Memorial Nursing Home, a program he called the Eden Alternative, he provided a small opening for residents to express loyalty—a limited but real opportunity for them to grab on to something beyond mere existence. And they took it hungrily.

“If you’re a young doc, and you bring all these animals and children and plants into a sterile institutional nursing home circa 1992, you basically see magic happen in front of your eyes,” Thomas told me. “You see people come alive. You see them begin to interact with the world, you see them begin to love and to care and to laugh. It blows your mind.”

The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days. For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns. It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.

That experiment has failed. If safety and protection were all we sought in life, perhaps we could conclude differently. But because we seek a life of worth and purpose, and yet are routinely denied the conditions that might make it possible, there is no other way to see what modern society has done.

*   *   *

BILL THOMAS WANTED
to remake the nursing home. Keren Wilson wanted to do away with it entirely and provide assisted living facilities instead. But they were both pursuing the same idea: to help people in a state of dependence sustain the value of existence. Thomas’s first step was to give people a living being to care for; Wilson’s was to give them a door they could lock and a kitchen of their own. The projects complemented each other and transformed the thinking of people involved in elder care. The question was no longer whether a better life was possible for people made dependent by physical deterioration: it was clear that it was. The question now was what the essential ingredients were. Professionals in institutions all over the world began trying to find answers. By 2010, when Lou Sanders’s daughter, Shelley, went out searching for a nursing home for her father, she had no inkling of this ferment. The vast majority of places that existed for someone like him remained depressingly penitentiary. And yet new places and programs attempting to remake dependent living had begun springing up across the country and the city.

In the Boston suburbs, just twenty minutes’ drive from my home, there was a new retirement community called NewBridge on the Charles. It was built on the standard continuum-of-care framework—there’s independent living, assisted living, and a nursing home wing. But the nursing home that I saw on a visit not long ago looked nothing like the ones I was familiar with. Instead of housing sixty people to a floor in shared rooms along endless hospital corridors, NewBridge was divided into smaller pods housing no more than sixteen people. Each pod was called a “household” and was meant to function like one. The rooms were all private, and they were built around a common living area with a dining room, kitchen, and activity room—like a home.

The households were human size, which was a key intention. Research has found that in units with fewer than twenty people there tends to be less anxiety and depression, more socializing and friendship, an increased sense of safety, and more interaction with staff—even in cases when residents have developed dementia. But there was more to the design than just size. The households were built specifically to avoid the feel of a clinical setting. The open design let residents see what others were up to, encouraging them to join in. The presence of a central kitchen meant that, if a person felt like having a snack, he or she could go have a snack. Just standing and watching people, I could see the action spill over boundaries the way it does in real homes. Two men were playing cards in the dining room. A nurse filled out her paperwork in the kitchen instead of retreating behind a nurses’ station.

There was more to the design than just architecture. The staff I met seemed to have a set of beliefs and expectations about their job that was different from what I’d encountered in other nursing homes. Walking, for instance, wasn’t treated as a pathological behavior, as became instantly apparent when I met a ninety-nine-year-old great-grandmother named Rhoda Makover. Like Lou Sanders, she’d developed blood pressure problems, as well as sciatica, that resulted in frequent falls. Worse, she’d also become nearly blind from age-related retinal degeneration.

“If I see you again, I wouldn’t recognize you. You’re gray,” Makover told me. “But you’re smiling. I can see that.”

Her mind remained quick and sharp. But blindness and a tendency to fall make a bad combination. It became impossible for her to live without twenty-four-hour-a-day help. In a normal nursing home, she would have been confined to a wheelchair for her safety. Here, however, she walked. Clearly there were risks. Nonetheless, the staff there understood how important mobility was—not merely for her health (in a wheelchair, her physical strength would have rapidly deteriorated) but even more for her well-being.

“Oh thank God I can go myself to the bathroom,” Makover told me. “You would think it’s nothing. You’re young. You’ll understand when you’re older, but the best thing in your life is when you can go yourself to the bathroom.”

She told me that in February she would turn one hundred.

“That’s amazing,” I said.

“That’s old,” she replied.

I told her my grandfather lived to almost one hundred and ten.

“God forbid,” she said.

Just a few years earlier she’d had her own apartment. “I was so happy there. I was living. I was living the way people should live: I had friends, I played games. One of them would take the car, and we’d go. I was
living
.” Then came the sciatica, the falls, and the loss of her vision. She was moved into a nursing home, a different one, and the experience was terrible. She lost almost everything that was her own—her furniture, her keepsakes—and found herself in a shared room, with a regimented schedule and a crucifix over her bed, “which, being Jewish, I didn’t appreciate.”

She was there for a year before moving to NewBridge, and it was, she said, “No comparison.
No
comparison.” This was the opposite of Goffman’s asylum. Human beings, the pioneers were learning, have a need for both privacy and community, for flexible daily rhythms and patterns, and for the possibility of forming caring relationships with those around them. “Here it’s like living in my own home,” Makover said.

Around the corner, I met Anne Braveman, seventy-nine, and Rita Kahn, eighty-six, who told me they had gone to the movies the week before. It wasn’t some official, prearranged group outing. It was just two friends who decided they wanted to go see
The King’s Speech
on a Thursday night. Braveman put on a nice turquoise necklace, and Kahn put on some blush, blue eye shadow, and a new outfit. A nursing assistant had to agree to join them. Braveman was paralyzed from the waist down due to multiple sclerosis and got around by motorized wheelchair; Kahn was prone to falls and needed a walker. They had to pay the $15 fare for a wheelchair-accessible vehicle to take them. But it was possible for them to go. They were looking forward to watching
Sex and the City
on DVD next.

“Have you read
Fifty Shades of Grey
yet?” Kahn asked me, impishly.

I allowed, modestly, that I had not.

“I had never heard of chains and that stuff,” she said, marveling. Had I? she wanted to know.

I really didn’t want to answer that.

NewBridge allowed its residents to have pets but didn’t actively bring them in, the way Bill Thomas’s Eden Alternative had, and so animals hadn’t become a significant part of life there. But children had. NewBridge shared its grounds with a private school for students in kindergarten through eighth grade, and the two places had become deeply intertwined. Residents who didn’t need significant assistance worked as tutors and school librarians. When classes studied World War II, they met with veterans who gave firsthand accounts of what they were studying in their texts. Students came in and out of NewBridge daily, as well. The younger students held monthly events with the residents—art shows, holiday celebrations, or musical performances. Fifth and sixth graders had their fitness classes together with the residents. Middle schoolers were taught how to work with those who have dementia and took part in a buddy program with the nursing home residents. It was not unusual for children and residents to develop close individual relationships. One boy who befriended a resident with advanced Alzheimer’s was even asked to speak at the man’s funeral.

“Those little kids are charmers,” said Rita Kahn. Her relationship with the children was one of the two most gratifying parts of her days, she told me. The other was the classes she was able to take.

“The classes! The classes! I love the classes!” She took a current events class taught by one of the residents in independent living. When she learned that President Obama had not yet visited Israel as president, she fired off an e-mail to him.

“I really felt I had to tell this man to get off his bum and go to Israel stat.”

It seemed like this kind of place might be unaffordable. But these weren’t wealthy people. Rita Kahn had been a medical records administrator and her husband a high school guidance counselor. Anne Braveman had been a Massachusetts General Hospital nurse, and her husband was in the office supply business. Rhoda Makover used to be a bookkeeper and her husband a dry goods salesman. Financially, these people were no different from Lou Sanders. Indeed, 70 percent of NewBridge’s nursing home residents had depleted their savings and gone onto government assistance in order to pay for their stay.

NewBridge had been able to cultivate substantial philanthropic support through its close ties to the Jewish community, and that had been vital to its staying afloat. But less than an hour’s drive away, close to where Shelley and her husband lived, I visited a project that had nothing like NewBridge’s resources and nonetheless found ways to be just as transformative. Peter Sanborn Place was built in 1983 as a subsidized apartment building with seventy-three units for independent, low-income elderly people from the local community. Jacquie Carson, its director since 1996, hadn’t intended to create nursing-home-level care there. But, as her tenants aged, she felt that she had to find a way to accommodate them permanently if they wanted it—and want it they did.

At first, they just needed help around their homes. Carson arranged for aides from a local agency to help with laundry, shopping, cleaning, and the like. Then some residents became weak, and she brought in physical therapists who gave them canes and walkers and taught them strengthening exercises. Some tenants required catheters, care for skin wounds, and other medical treatment. So she organized visiting nurses. When the home care agencies started telling her that she needed to move her residents into nursing homes, she remained defiant. She launched her own agency and hired people to do the job the way it should be done, giving people help with everything from meals to medical appointments.