BackgroundThe terminal illness of late-stage Alzheimer’s and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die—which many advance directives cannot provide. Proxies/agents’ substituted judgment may not be concordant with patients’ requests. While advance directives can be patients’ last resort (...) to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive’s requests to cease assisted feeding.AimThis article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters’ selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are implemented. The article includes excerpts from “dementia-specific” directives or supplements that exemplify each flaw—mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests “Cease assisted feeding” but the incapacitated patient apparently expresses the desire to “Continue assisted feeding.” Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities’ additional clinical criteria as a prerequisite to honor the requests in patients directives.ConclusionThis critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients’ wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care? (shrink)

Ronald Dworkin introduced the example of Margo, who was so severely demented that she could not recognise any family or friends, and could not remember anything of her life. At the same time, however, she seemed full of childish delight. Dworkin also imagines that, before her dementia, Margo signed an advance refusal of life-saving treatment. Now severely demented, she develops pneumonia, easy to treat, but lethal if untreated. Dworkin argues that the advance refusal ought to be heeded and Margo be (...) allowed to die of that pneumonia, on the basis that the prior refusal expresses her true wishes. In this paper I want to challenge Dworkin’s understanding of identity and his conclusion about advance refusals, and I develop my argument in two directions. First, I argue that the demented Margo is not some ‘lesser’ version of the ‘true’ Margo, but instead that the present Margo’s wishes should take precedence over those of the past Margo, on the grounds that all of us are entitled to change our minds. Second, I argue for a stronger role for friends and family members in sustaining the demented Margo’s identity through her years of decline. Based on this, I argue for a presumption against the advance refusal, but I allow that in extreme cases, a friend might have the authority to demand that it be heeded. (shrink)

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. (shrink)