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A Fight to Die

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  • A Fight to Die

    Source: https://www.bloomberg.com/news/featu...ossible-choice


    A Fight to Die
    Sandy Morris, in the grip of ALS, wants to expand access to aid in dying so ending her life won’t be a crime.
    By Esme E Deprez
    December 17, 2021, 5:00 a.m. EST

    There’s a nursery rhyme adapted from a Shel Silverstein poem that Sandy Morris used to sing at Girl Scout camp in California. It’s about being eaten by a boa constrictor, beginning with the toes, and Morris can still recite the lyrics by heart: “Oh, fiddle, it’s up to my middle / Oh, heck, it’s up to my neck / Oh, dread, it’s upmmmmmmmmmmffffffffff …”

    This feeling of getting swallowed, in slow motion, is what Morris says it’s like to have amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. Since doctors diagnosed her with the incurable neurodegenerative condition on Jan. 6, 2018—but really before that, since she’s the type to have already done the research to diagnose herself—Morris has gone to sleep each night knowing she’ll awake with less physical function and independence than the day before.

    Now 55, Morris remains as mentally sharp as during her 28-year career in business management and analytics at Hewlett-Packard. Recently, she’s become a bulldog activist for people with her illness, pushing to make clinical trials more humane and expand access to experimental ALS therapies. But four years after her foot first fumbled in her horse’s stirrup, the serpent has nearly swallowed her whole. No more riding, no more cross-country skiing or trail runs through Tahoe National Forest. She now spends most of her day in bed, inanimate below the chin.

    On the overcast October day I visited her home in the mountain town of Sierraville, Calif., an aide named Katherine wiped Morris’s face with a hot, wet washcloth and brushed her teeth. Another, Hannah, typed a text message to her husband, gauging his preference between chicken tacos and a burrito for Mexican takeout that night. An artificial-intelligence-powered computer screen called a Tobii tracked the gaze of her eyeballs to sift through her email inbox. A ventilator forced air up her nostrils so she could breathe. And when it was time to sit up to be fed guacamole-topped nachos and sips of a whiskey cocktail through a straw, her three adult children performed an elaborate choreography to transfer her limp body into a motorized wheelchair, with her youngest son bearing her weight on his back.

    Morris is warm and intense, with creamy skin, curly light brown hair, and a dark sense of humor. She refers to herself as a shrunken head and talks about her impending death as casually and openly as if she were asking someone at the dinner table to pass the butter. She intends to use California’s aid-in-dying law, which allows mentally competent people with a terminal illness and a six-month prognosis the ability to obtain a prescription for lethal drugs. (Opponents still call this physician-assisted suicide; practitioners prefer medical aid in dying, or MAID.) She’s fulfilled all the requirements to qualify, and her case embodies the spirit of the law’s aim: to offer agency and autonomy at the end of life in lieu of suffering, indignity, and shame.

    The question now: when? Surely the answer has rarely come easy for those who’ve tread this path before. How do you—how can you—know when it’s time to go? But Morris’s dilemma is complicated by a peculiar feature of America’s aid-in-dying laws: a requirement that patients “self-administer” the drugs. It was conceived decades ago as a well-intentioned attempt to ensure complete consent by mandating that the patient take the final action, a safeguard to prevent the practice from being used to euthanize vulnerable people. But in cases of extreme physical disability, the safeguard can be a barrier. It can exclude people with ALS, Parkinson’s disease, multiple sclerosis, and other conditions who otherwise qualify for aid in dying but have lost the ability to swallow or use their arms and hands. Patients such as these need assistance with virtually everything; the only thing they can’t get help with is ingesting the aid-in-dying drugs.

    The threat of felony charges acts as enough of a deterrent for any physician or loved one tempted to help. And so that leaves Morris with a choice: She can ingest the lethal medication while still physically able to do so, as the law requires, but before she’s emotionally ready to leave her husband, their three kids, and her ALS advocacy. Or she can wait and risk losing the ability to act on her own, and thus her access to the law—and let nature take its course with a drawn-out death-by-suffocation she’s desperate to avoid...

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