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Meeting the Challenges of Advance Care Planning for Advanced Dementia – A Social Justice Imperative.

By Dr. Stanley Terman

It is not easy to die of advanced dementia. Yet almost everyone has this goal: a dying that is private, peaceful, and timely.

Dementia patients cannot qualify for Medical Aid in Dying (Physician-Assisted Suicide). Usually, their only legal, peaceful option is to stop ingesting food and fluid. Yet some authorities strongly oppose this way of dying. Knowing that traditional advance directives are not effective, and learning that authorities may oppose newer “dementia-specific” directives/living wills, many patients harbor the “Dementia Fear.” They have reason to worry that others will force them to endure prolonged dying, possibly with increased suffering, perhaps for years.

Some patients strive to make their ultimate existential decision at “five minutes before midnight”—to live as long as possible. But they live with this source of daily anxiety, which decreases their ability to enjoy life: “If I wait too long, I will miss the opportunity to kill myself by losing my mental or physical capacity.” Some commit preemptive suicide, an option that requires sacrificing up to years of good living that is not only sad but tragic. Premature dying would not be necessary if patients could trust others to honor their end-of-life wishes.

End of Life Choices of New York’s directive attempts to overcome opposition by offering an “aggressive” option that totally dismisses patients’ feeding behavior as criteria to stop assisted feeding. But their alternative—reaching Stage 6 of any version of the Functional Assessment Staging Tool—brings up another problem: most physicians will continue assisted feeding even if patients manifest all the tool’s listed behaviors: patient needs help putting on clothes, bathing, and toileting; and has urinary and fecal incontinence.

Compassion & Choices’ Dementia Values and Priorities Tool lets planning principals choose one or two of 15 conditions as sufficient to be allowed to die naturally, and a separate list of 7 behaviors as sufficient to stop assisted feeding. Yet treating physicians and their organizations may insist patients’ best interest is to continue assisted feeding unless they manifest distress.

To overcome physician refusal, one could insist on the criterion, severe enough suffering. But clinicians recognize it is difficult to determine if non-verbal advanced dementia patients are experiencing severe suffering—especially with the certainty needed to allow patients to die.

Strategic Advance Care Planning could offer a possible solution: During advance care planning, planning principals judge each condition by responding to: “Would this condition cause severe enough suffering for you to want to die of your underlying disease?” To determine if it is time to stop assisted feeding, treating physicians then need only assess if their patients have contemporaneously reached at least one of these pre-judged clinical conditions.

The online patient decision aid informs planning principals what it is like to live with advanced dementia using 50 illustrated descriptions at a level of reading comprehension of grade 4, which many early stage dementia patients can understand. It achieves this by broadening the concept of suffering to comprehensively reflect what people dread most about prolonged dying in advanced dementia and other terminal illnesses. In addition to physical and emotional suffering, it considers existential suffering (loss of meaning in life and the ability to relate to others); suffering due to disruption of life narrative; suffering the disease causes loved ones; and moderate suffering from several conditions that add up to severe.

Recording planning principals’ semi-structured interviews on video can: memorialize their advance decisions; demonstrate if they possessed decision-making capacity; let them add personal details about their end-of-life wishes; and, most importantly, give them an opportunity to be convincing.

In cases of advanced dementia, clear, comprehensive, consistent, and convincing directives/living wills may not, by themselves, be effective. It is important that an advance directive include over a dozen strategies in order to compel physicians to honor, and to prevent third parties from sabotaging planning principals’ end-of-life goal.

The Petrie-Flom Center Staff

The Petrie-Flom Center staff often posts updates, announcements, and guests posts on behalf of others.

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