Fighting for choice in dementia deaths

Last month, the daughters of Wendy Miller, a 68-year-old author of three bestselling books about her experience with dementia, posted online her final words: “In the end, I died simply by deciding not to eat or drink anymore.”

Her stark statement reminded me of my interviews with Dan Winter, 62, which had begun nine months before he, too, took his own life. Alzheimer’s disease was slowly disassembling Dan’s rich and complex personality, and he, like Wendy, remained determined to actively decide how and when to die. Dan had witnessed a parent slowly tumble down the rabbit hole of dementia and resolved not to follow that example.

Given a choice, he and Wendy would have preferred to rely on medical assistance in dying (MAiD), but that method isn’t available in the U.K. where she lived, while in the 10 American states and the District of Columbia that have passed death with dignity laws these effectively exempt people with dementias. They mainly do this by requiring patients to have a prognosis of 6 months or less to live, and it is the rare person with dementia who still retains mental capacity when they reach that point.

Dan appreciated that most Americans with neurodegenerative disorders want their lives to be maximally prolonged, even if it involves years in which they can no longer care for themselves, recognize loved ones, or be able to crack a joke and laugh. He would never have tried to talk somebody out of the idea of “letting Alzheimer’s do its thing.” He recognized that there are plenty of folk who think, Gee whiz! Grandma seems really happy staring out her window or watching television all day long.

Dan explained to me that he hoped the people with dementias who want to foreshorten life ought to freely have access to information about all the available methods—be it a DIY overdose, withholding or withdrawing life-prolonging treatments, palliative sedation, voluntarily stopping eating and drinking (VSED), or spelling out in a directive that they don’t want to be fed if they cease evincing interest in eating. He believed that people should be able to make plans in advance and openly discuss their wishes with loved ones.

I admired Dan for candidly articulating his viewpoint, and I never doubted his mental capacity to make decisions. He fully subscribed to Rebecca Solnit’s comment: “The self is also a creation, the principal work of your life, the crafting of which makes everyone an artist.” As Dan’s disease progressed, he intermittently got lost in space and time and experienced the erasure of his bold creation of a self. Dan’s suffering was existential and excruciating.

But Dan also understood that the notion of hastening one’s death is a taboo subject, and it requires juggling complex issues like the sanctity of life, ageism, and the innate rights of people with cognitive disorders.

There is a small body of research concerning fates worse than death. It includes a study of older outpatients, where 89 percent of subjects endorsed they would decline life-saving treatments if these resulted in severe cognitive impairment. In another study involving hospitalized patients, the majority of respondents identified six conditions as bad as or worse than death, including being bed-bound, permanently dependent on others to function, irreversibly unable to swallow, and having the experience of constant confusion. 13 years into Alzheimer’s, Dan’s father had all of them.

Wendy and Dan are hardly the only people who have decided to actively truncate dementia. Others include Sandra Bem, Gillian Bennett, John L’Heureux, Janet Adkins, Cheryl Hiebert, Gayle Garlock, Annie Zwijnenberg, Brian Ameche, John Strong Macauley Smith, Ruth Oppenheim, Wayne Briese, Cheryl Hauser, and Hugo Clause.

Each woman and man on this list chose to preemptively die. Preemptively because their neurodegenerative diseases would have sooner or later resulted in their demise. Some sought a medical professional’s assistance and went so far as to travel to another country where the process of MAiD is legal; some acquired and ingested lethal substances by themselves—an approach that the Hemlock Society used to promote.

Janet Adkins was the first patient attended to by Dr. Jack Kevorkian. The original “Dr. Death” did not have a problem with ending the suffering of a woman who was deteriorating from Alzheimer’s. Sandra Bem, a psychologist, found dementia to be intolerable and decided to die with the support of her husband and friends. Bem relied on a barbiturate overdose. Hugo Clause, a celebrated author and poet, arranged to be euthanized by his physician. In a moving tribute, the former prime minister of Belgium said, “I can live with the fact that he decided thus, because he left us as a great glowing star, right on time, just before he would have collapsed into a stellar black hole.”

Dan was prepared to ingest a carefully assembled cache of medications before he, too, descended into a black hole. But he altered the plan when family members expressed their concern about his imminent “suicide.” Although Dan did not believe this was the appropriate word for the action he was considering, he understood that his kinfolk might not accept the distinction. He hoped that a more “natural” death by relying on VSED would potentially be more acceptable. He knew that dehydration was not going to be an especially rapid or easy way to die, but he told me, “There are a couple in the [Winter] crew who still identify as Catholic, and there’s no key to heaven for people who suicide.”

He died 13 days later.

Before beginning her own fast, Wendy Miller wrote: “The only legal choice we shouldn’t have in life is when to be born; for everything else, we, as humans, should have a choice; a choice of how we live and a choice of how we die.” She and Dan wished that existing and future MAiD bills and protocols would be liberalized to no longer exclude dementia. I, too, hope this method will become an option.

Lewis Cohen is a psychiatrist and author of Winter’s End: Dementia and Dying Well.

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