Being Mortal: Medicine and What Matters in the End

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.”

 

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