On Avoiding Deep Dementia

Abstract

Some people will confront Alzheimer's with a measure of resignation, a determination to struggle against the progressive debilitation and to extract whatever comforts and benefits they can from their remaining existence. They are entitled to pursue that resolute path. For other people, like myself, protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect. The critical question for those of us seeking to avoid protracted dementia is how best to accomplish that objective. One strategy is to engineer one's own death while still mentally competent to do so (even in the stage of mild dementia). If I were to use a preemptive strategy in the face of a dementia diagnosis, I would probably choose to stop eating and drinking, a process known as voluntarily stopping eating and drinking. An alternative tactic for avoiding prolonged dementia would be to allow oneself to decline into moderate dementia—thus losing capacity to perform self‐deliverance or even to make serious medical decisions—but before getting to that point to provide advance instructions rejecting prospective life‐sustaining medical interventions. These advance instructions would authorize palliative but not curative measures. My current personal instructions define the point of intolerable cognitive decline triggering medical nonintervention as “mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.” These instructions dictate allowing my demise at a point of moderate dementia when I may not be perceptibly suffering, when I may still be getting some rudimentary satisfaction from my debilitated life, and when I no longer recall the preoccupation with personally intolerable indignity that motivated my instructions. Can I expect that my advance instructions will be implemented in those circumstances? Is it lawful, and is it moral for a surrogate decision‐maker and associated caregivers to allow an uncomprehending, ostensibly content but demented individual to die? My analysis herein contends that it is not only lawful and moral but also legally required to implement clear, considered advance instructions even at a stage of moderate dementia.

When Voluntary Stopping of Eating and Drinking in Advanced Dementia Is No Longer Voluntary

“…In “On Avoiding Deep Dementia,” Norman Cantor astutely notes that, for some individuals, the concept of “protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect.” This cannot be argued with. Cantor's solution, however—that in the wake of a dementia diagnosis, patients should have the option to direct, in advance, instructions for voluntary stopping of eating and drinking (VSED) should they develop a state of deep dementia—is more ethically challenging than it may first appear.…”

Advance Directives and Discrimination against People with Dementia

“…In the article “On Avoiding Deep Dementia,” Norman Cantor defends a position that I suspect many readers share . In my years writing and speaking on advance directives and dementia, I've found that most people support one of two positions.…”

“…I n the article "On Avoiding Deep Dementia," Norman Cantor defends a position that I suspect many readers share. 1 In my years writing and speaking on advance directives and dementia, I've found that most people support one of two positions. They are convinced either that advance choices should control the treatment dementia patients receive or that the welfare of a person with dementia should sometimes take priority over earlier choices.…”

“…3 One alternative to living with early-stage dementia is to bring about one's death, but Cantor acknowledges that preemptive death carries "the hazard of cutting short an existence that is still enjoyable (and might continue to be so for some unknown period)." 4 Experts say that people with dementia often adjust to their changed circumstances, expressing and displaying contentment much of the time. Although they have their ups and downs (like all of us), people with dementia who live in supportive settings rarely exhibit clear and persistent signs of suffering.…”

An Open Letter to Norman Cantor Regarding Dementia and Physician‐Assisted Suicide

“…Thank you for sharing such a personal and heartfelt essay. 1 I have been asked by the editors to comment. Reading it inspires me to do so in a similarly heartfelt way.…”