Timely dying in dementia: Use patients' judgments and broaden the concept of suffering

Abstract

Patients living with advanced dementia (PLADs) face several challenges to attain the goal of avoiding prolonged dying with severe suffering. One is how to determine when PLADs’ current suffering becomes severe enough to cease all life‐sustaining treatments, including withdrawing assistance with oral feeding and hydrating, a controversial order. This article broadens the concept of suffering by including suffering that cannot be observed contemporaneously and the suffering of loved ones. Four paradigm shifts operationalize these concepts. During advance care planning, patients can judge which future clinical conditions would cause severe suffering. To decide when to allow patients to die, treating physicians/providers only need to assess if patients have reached patients' previously judged, qualifying conditions. Questions: Will this protocol prevent PLADs’ prolonged dying with suffering? Deter early‐stage dementia patients from committing preemptive suicide? Sway decision‐making surrogates from withholding life‐sustaining treatments from patients with middle‐stage dementia? Provoke providers’ resistance to relinquish their traditional, unilateral authority to determine patients’ suffering?

Can an effective end‐of‐life intervention for advanced dementia be viewed as moral?

“…Preserving life is generally a benefit, but for PLADs, the harm may be outweighed by their suffering and inability to interact with others. 1 Pope John Paul II later reversed his position to: "True compassion. .…”

Navigating late‐stage dementia: A perspective from the Alzheimer's Association

“…On the other hand, hospice care emphasizes providing care and comfort and enhancing the quality of life for individuals nearing the end of their life journey. While a recent article entitled "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering" proposes that expressed agitation results from an inability to convey pain properly, 4 it is essential to note that even individuals in later stages can communicate discomfort or pain through sounds or facial expressions. The Alzheimer's Association advises caregivers that dementia-related behaviors, including agitation, serve as a form of communication.…”

“…2,5 Another point discussed in the article titled "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering" refers to how caregivers' mental health and well-being are impacted by a "loved one's suffering." 4 While there are many challenges in caring for an individual living with dementia, caregivers often feel honored to care for their loved ones. In 2021, the Alzheimer's Association conducted a survey to gain insights into the caregiving experience, revealing that many family members and friends find rewards in providing care, which can counterbalance the associated stress.…”

Responses to Open Peer Commentaries about “Timely dying in dementia: use patients' judgments and broaden the concept of suffering” and “Can an effective end‐of‐life intervention for advanced dementia be viewed as moral?”

“…The companion Perspectives essay included an illustration in which a patient cannot recognize close relatives but can still enjoy their visits. 21 Directives that request ceasing assisted feeding as soon as the patient cannot recognize relatives are dangerously flawed since following their requests could lead to premature dying. 22 Regarding the possibilities of coping with [advanced dementia] and a diminishing death wish or a change of heart, patients completing ACP must make a mutually exclusive choice.…”