Being Mortal: Chapter Four

Swapnil Hiremath summarized chapter four, bringing us to the the halfway point. Remember the chat is next Tuesday and Wednesday, July 14 and 15.

Chapter 4: Assistance

Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.
— Isaac Asimov

Atul Gawande continues in Chapter 4 with vignettes of frail elderly individuals facing loss of independence, and the difficult choices they face. This time it is the story of Lou Sanders, a gregarious ex-veteran living in a working class Boston neighbourhood. Lou's comfortable life starts unravelling soon after his wife’s passing. As an aside, it is notable how a ‘tipping point’ often is the death of a partner (and though there have been no stories so far of single/unattached individuals, I suspect they would be doing much worse at this stage). [note to self: buy flowers on the way home tonight]. Being a very social person, Lou is adamant in refusing to move to a nursing home ‘full of old people.’ He even forces his daughter to swear to never ship him off to a nursing home. After a heart attack, followed by Parkinson’s and additional falls, he agrees to move in with his daughter Shelley, an extraordinarily supportive and willing caregiver. The realities of the modern nuclear family however intrude, and this transition is not as smooth – unlike the story of the author’s grandfather Sitaram living in a large joint family. The toll of being a full time working professional, homemaker, and also caregiver for her father’s increasing needs proves to be too much for Shelley. Medical problems include hearing difficulty, prostatism, incontinence and continuing falls. The last is exacerbated with postural hypotension (likely due to the autonomic dysfunction common with Parkinson’s – and/or the drugs used to treat it). Lou continues to refuse moving to a nursing home, and is ultimately and unhappily transitioned into an assisted living facility.

The story of assisted living facilities, and how they came into being is one of the amazing stories that make Being Mortal such a compelling story. It is the story of Keren Brown Wilson, and her stroke-struck mother’s plaintive request to her, ‘Why don’t you do something to help people like me?’ Keren mother's request was a plea for autonomy and respect.

“She wanted a small place with a little kitchen and a bathroom. It would have her favorite things in it, including her cat, her unfinished projects, her Vicks VapoRub, a coffeepot, and cigarettes. There would be people to help her with the things she couldn’t do without help. In the imaginary place, she would be able to lock her door, control her heat, and have her own furniture. No one would make her get up, turn off her favorite soaps, or ruin her clothes. Nor could anyone throw out her “collection” of back issues and magazines and Goodwill treasures because they were a safety hazard. She could have privacy whenever she wanted, and no one could make her get dressed, take her medicine, or go to activities she did not like. She would be Jessie again, a person living in an apartment instead of a patient in a bed.”

So Keren and her husband, both academics, sketched out a plan for a new kind of place, and cleared endless bureaucratic and and financial  hurdles to open ‘Park Place’ in Portland, Oregon. It had many innovative, almost radical, components – one of the most important being that the residents were called ‘tenants’, not patients, and had many more rights – such as a locked front door to their apartments.  Despite this increased freedom, there was no trade-off with worsening safety as feared. The state of Oregon made Wilson track data – and it revealed improved outcomes (including satisfaction) with lower costs. In hindsight, much of this is now unsurprising, if we consider Maslow’s hierarchy of needs.

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Much of the research in this area is done by Laura Carstensen, now a Stanford Professor in Longevity, but once a high school educated almost single mother (read chapter 4 for the truly amazing story of how everything changed for her). Perspectives change as the end of life appears closer on the horizon, and comfort and companionship become valued over other ambitions. Unfortunately, the kind of assisted living started by Keren Brown Wilson has now morphed into something else entirely, with very few facilities including the core concepts from her original vision. The fate of Lou Sanders was in one such place. After initially coping and adjusting, the falls and more critical events force Shelley to ‘place’ him in a nursing home...

a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.