As surgeon and medical writer Atul Gawande shares in his bestselling book Being Mortal: Medicine and What Matters in the End, when a young woman named Keren Brown Wilson was a college student in 1980, her mother, Jessie, suffered a devastating stroke. Jessie ended up in a nursing home, which seemed like a good enough place, but she never stopped asking to go home. “Get me out of here,” she said repeatedly to her children. Instead over the years, Wilson’s mother moved through a series of nursing homes, never happy.
Meanwhile Wilson eventually got married and became a PhD student in gerontology.
Gawande writes, “When she told her mother she would be studying the science of aging, Jessie asked her a question that Wilson says changed her life:
Her mother outlined her simple desires: she pined for a small place with her favorite things, where she would be able to lock her door and have her own furniture. No one would make her get up at a certain time, turn off her TV, or throw away her collection of magazines. She wanted privacy and some freedom. She wanted a home.
Wilson and her husband began sketching out the features of a new kind of home for the elderly and infirm. Like many innovators, they instinctively cycled through the “3 questions” process I outline in A More Beautiful Question and in this article. They spent days on the “What if?” part of the process. What if the people were called residents, not patients, and treated like homeowners? What if they were allowed to have pets? Overnight visitors? What if the care providers understood they were entering someone’s home not a hospital room?
Then came the “How?” part. Wilson and her team wanted to build a place to try out their ideas, but ran into a daunting series of obstacles. But, throughout their journey, Jessie’s plaintive question and simple wants fueled their quest. They hired an architect to make detailed building plans, and then went to banks to try to get loans. When that didn’t succeed they found a private investor. They were refused their state license but camped out in a government office until they secured an exemption.
They persevered, and in 1983 their experimental “living center with assistance” opened in Portland, Oregon. Their concept was attacked immediately, with questions about responsibility and safety. Again, they kept going, and soon opened a second location in Portland. A few years later, a study comparing people in their assisted living residences versus those in a nursing home revealed that life satisfaction and physical and cognitive functioning of the assisted living residents was higher; incidence of depression was lower. Cost of government support was 20 percent lower than it would have been in a nursing home.
The beautiful question had led to a transformative result.
Turns out, Wilson’s mother’s beautiful question was actually a subset of a larger, more eternal question. As Gawande writes, “At the center of Wilson’s work was an attempt to solve a deceptively simple puzzle: What makes life worth living when we are old and frail and unable to care for ourselves?” His book goes on to talk about how researchers over the years have attempted to answer that broader beautiful question. And indeed it’s not an easy one to answer, especially in a world where bigger and better medical intervention has long been the cure to all ills, except perhaps the elusive quality of life issue.
Often there is no one good, final answer to a beautiful question. Things evolve; real-life issues get in the way. Revisiting the assisted living world decades after the idea was introduced, Gawande tells readers that even though Wilson’s innovative original idea had shown it could be profitable, apparently it wasn’t profitable enough, and assisted living has mostly gone in the direction of building bigger buildings with more efficiency (ie, profit), resulting in less privacy and independence, the key things Wilson’s mother Jessie longed for.
So it appears the beautiful question “Why don’t you do something to help people like me?” is still out there, leading various people, including Atul Gawande, to continue to ask “Why? What if? and How? as we look for ways to address this conundrum we may all face, someday, in our own lives.