Being Mortal: Medicine and What Matters in the End

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THE IDEA SPREAD astoundingly quickly. Around 1990, based on Wilson’s successes, Oregon launched an initiative to encourage the building of more homes like hers. Wilson worked with her husband to replicate their model and to help others do the same. They found a ready market. People proved willing to pay considerable sums to avoid ending up in a nursing home, and several states agreed to cover the costs for poor elders.

 

Not long after that, Wilson went to Wall Street for capital to build more places. Her company, Assisted Living Concepts, went public. Others sprang up with names like Sunrise, Atria, Sterling, and Karrington, and assisted living became the fastest-growing form of senior housing in the country. By 2000, Wilson had expanded her company from fewer than a hundred employees to more than three thousand. It operated 184 residences in eighteen states. By 2010, the number of people in assisted living was approaching the number in nursing homes.

 

But a distressing thing happened along the way. The concept of assisted living became so popular that developers began slapping the name on just about anything. The idea mutated from a radical alternative to nursing homes into a menagerie of watered-down versions with fewer services. Wilson testified before Congress and spoke across the country about her increasing alarm at the way the idea was evolving.

 

“With a general desire to adopt the name, suddenly assisted living was a redecorated wing of a nursing facility, or a sixteen-bed boarding house looking to attract private-pay clients,” she reported. However much she attempted to uphold her founding philosophy, few others were as committed.

 

Assisted living most often became a mere layover on the way from independent living to a nursing home. It became part of the now widespread idea of a “continuum of care,” which sounds perfectly nice and logical but manages to perpetuate conditions that treat the elderly like preschool children. Concern about safety and lawsuits increasingly limited what people could have in their assisted living apartments, mandated what activities they were expected to participate in, and defined ever more stringent move-out conditions that would trigger “discharge” to a nursing facility. The language of medicine, with its priorities of safety and survival, was taking over, again. Wilson pointed out angrily that even children are permitted to take more risks than the elderly. They at least get to have swings and jungle gyms.

 

A survey of fifteen hundred assisting living facilities published in 2003 found that only 11 percent offered both privacy and sufficient services to allow frail people to remain in residence. The idea of assisted living as an alternative to nursing homes had all but died. Even the board of Wilson’s own company—having noted how many other companies were taking a less difficult and less costly direction—began questioning her standards and philosophy. She wanted to build smaller buildings, in smaller towns where elderly people had no options except nursing homes, and she wanted units for low-income elderly on Medicaid. But the more profitable direction was bigger buildings, in bigger cities, without low-income clientele or advanced services. She’d created assisted living to help people like her mother, Jessie, live a better life, and she’d shown that it could be profitable. But her board and Wall Street wanted avenues to even bigger profits. Her battles escalated until, in 2000, she stepped down as CEO and sold all her shares in the company she’d founded.

 

More than a decade has passed since. Keren Wilson has crossed into middle age. When I spoke to her not long ago, her crooked-toothed smile, slumped shoulders, reading glasses, and white hair made her look more like a bookish grandmother than the revolutionary entrepreneur who’d founded a worldwide industry. Ever the gerontologist, she gets excited when the conversation veers to research questions, and she is precise when she speaks. She nonetheless remains the sort of person who is perpetually in the grip of big, seemingly impossible problems. The company made her and her husband wealthy, and with their money they started the Jessie F. Richardson Foundation, named after her mother, in order to continue the work of transforming care for the elderly.

 

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