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TITLE: Challenge: To Create Effective Advance Directives/Living Wills for Late-Stage Dementia

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Background: The advanced or late stage of Alzheimer’s and related dementias is a cruel, burdensome, and often prolonged terminal illness. Many dementia patients do not depend on medical life-sustaining treatment; hence, they can survive for several years by merely receiving assistance with oral feeding and hydrating. Most people abhor the prospect of prolonged dying from dementia since the harms and burdens increase significantly as benefits decrease to zero. To avoid prolonged misery, advance directives are the only option because there are no medications to prevent, delay the onset, or treat advanced dementia; dementia patients cannot qualify for Medical Aid in Dying; and physicians and judges can refuse to honor the instructions of proxies/agents to stop oral feeding and hydrating. Those who oppose stopping assisted feeding need only one flaw in an advance directive to justify dismissing them. Ideally, evidence of what persons who completed advance directives wanted should be clear and convincing, and can survive various challenges that incapacitated dementia patients have “changed their mind.”

Aim of the article: To explain and illustrate four types of flaws so advance directives only give patients and their family members a false sense of security for attaining a peaceful and timely dying. Two types of flaws can occur as advance directives are completed: process flaws that relate to how the forms are completed; and, content flaws that relate to the selection and description of conditions and interventions. Two other types of flaws emerge later: inherent qualities that make the advance directive unacceptable so implementation is unlikely; and, omitting strategies designed to compel physicians to write honoring orders and to prevent third parties from sabotaging these orders. The article uses a dozen new “dementia-specific” advance directives or supplemental forms to illustrate 24 flaws.

Significance: Reducing the suffering of millions of dementia patients and their family members is important, but this contentious area also inspires several profound questions. Do some flaws violate the four principles of bioethics? Will patients’ personal freedom, autonomy, and self-determination be respected by responsive, even noble, physicians’ actions? Or will patients’ wishes be thwarted by physicians’ self-serving, insulting, or paternalistic actions?

POSTER CONTACT: Stanley Terman; drterman@caringadvocates.org