On Avoiding Deep Dementia

Aid‐in‐dying laws in the United States have two important restrictions. First, only patients who are terminally ill, defined as having a prognosis of six months or less to live, qualify. Second, at the time the patients take the lethal medication, they must be competent to make medical decisions. This means that an advance directive requesting aid in dying for a later time when the patient lacks decision‐making capacity would be invalid. However, many people are more concerned about avoiding living into severe dementia for years—a time when they will lack decision‐making capacity—than they are about preventing suffering or the loss of dignity or autonomy for a few months at the end of life. Gillian Bennett is an example of someone determined not to live into severe dementia. She opted for preemptive suicide in 2014, explaining why in a letter she posted online: “Every day I lose bits of myself, and it’s obvious that I am heading toward the state that all dementia patients eventually get to: not knowing who I am and requiring full‐time care.” A major problem with Bennett’s solution, however, is that the individual is likely thereby to be giving up some “good time.” A legal alternative to preemptive suicide is to create an advance directive stating the circumstances under which one wants not to receive any lifesaving or life‐sustaining treatment, even the most basic and noninvasive. This option is our focus in this paper: how to create effective advance directives to avoid living into severe dementia. To be relevant to progressive dementia, the directive would need to state what kinds of care should be withheld and when. At the same time, advance directives for severe dementia face serious challenges. Before addressing these, we review the normative force of directives themselves.

Section: Essaymentioning

confidence: 99%

Advance Directives for Refusing Life‐Sustaining Treatment in Dementia

Steinbock¹,

Menzel²

2018

“…If he reaches that point, Cantor's advance directive refuses “any and all life‐sustaining means.” Yet people with impairments like this are still capable of having relationships and engaging in activities that make life meaningful and enjoyable . 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).”…”

Section: Other Voicementioning

confidence: 99%

“…A final shortcoming of directives like Cantor's is their failure to respect people living with the disability of dementia. Cantor declares that his advance treatment refusals are based on a “personal vision of intolerable indignity and degradation associated with cognitive dysfunction.” But empirical research shows that people living with intellectual disabilities experience a better quality of life than nondisabled people think they do …”

Section: Other Voicementioning

confidence: 99%

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Advance Directives and Discrimination against People with Dementia

Dresser¹

2018

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. 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. As Cantor points out, I support the second position. I agree with several of Cantor's arguments. Where Cantor and I part ways is over the degree of control that advance directives should exert over the care of persons with moderate dementia. Although I don't welcome the prospect of living with dementia, I believe that people with the condition should be represented in the debate over treatment standards. It's not surprising that many, perhaps most, people unaffected by dementia think that their preferences should control the care they would receive as dementia patients. But people taking this position are neglecting the concerns and interests they may have as dementia patients.

“…Most of your essay concerns finding legal justifications for various methods of ending your life should you become afflicted by Alzheimer disease. Rather than discuss your legal reasoning, I want to address this issue of “self‐deliverance” (your preferred term for suicide under these circumstances) head on.…”

Section: Other Voicementioning

confidence: 99%

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

Sulmasy¹

2018

Dear Norm, Thank you for sharing such a personal and heartfelt essay. I have been asked by the editors to comment. Reading it inspires me to do so in a similarly heartfelt way. Although I don't know you well, I thought I'd write to you as if you were my patient. I share your sense that Alzheimer disease is a terrible scourge. I've seen much of this disease over a lifetime of practice, and I deeply understand its ravages and the debility and suffering it causes. But what you propose is not a good solution for the problems that Alzheimer disease poses for patients, families, and society. It will ultimately do far more harm than good. Please let me try to explain.