Timely dying in dementia: let patients judge using a broadened concept of suffering

Many people dread prolonged dying with suffering in the terminal illness, advanced dementia. To successfully facilitate a timely dying, advance directives must be effective and acceptable. This article considers whether authorities, including treating physicians, can accept as moral, the effective intervention that ceases caregivers’ assistance with oral feeding and hydrating. The article presents eight criticisms and “alternate views” regarding ceasing assisted feeding/hydrating. It draws on perspectives from clinical medicine, law, ethics, and religion. The conflict is between (A) people's core beliefs that reflect cultural norms and religious teachings regarding what is moral versus (B) patients’ autonomous right of self‐determination and claim right to avoid suffering. The article presents each side as strongly as possible. Accepting the intervention as moral could allow patients a peaceful and timely dying from patients’ underlying disease. Confidence in future success can deter patients and their surrogates from considering a hastened dying in earlier stages of dementia.

Section: Discussionmentioning

confidence: 99%

Section: Eight Arguments That Criticize the Set Of Orders As Immoral ...mentioning

confidence: 99%

Section: Eight Arguments That Criticize the Set Of Orders As Immoral ...mentioning

confidence: 99%

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

Terman

2024

“…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.…”

Section: Pain and Well‐being Of Individuals In Late‐stage Dementiamentioning

confidence: 99%

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

Clifford,

Moreno,

Kloske

2024

Alzheimer's disease (AD) is the most common cause of dementia, a general term for memory loss and decline in other cognitive abilities enough to interfere with daily life. AD accounts for 60% to 80% of dementia cases. The late stage of AD tends to be the shortest stage and, on average, lasts 1 to 2 years. As this stage of the condition progresses, it requires continuous intensive long‐term care and around‐the‐clock intensive care. The Alzheimer's Association stands firm in its commitment to supporting individuals living with AD and other dementia, their care partners, and their health‐care providers as they navigate treatment and care decisions across the continuum of the disease. This article is a direct response to recently published works that run counter to the Association's viewpoint. It outlines the Association's perspective on crucial factors for consideration during late‐stage dementia care, including advanced directives, palliative care, nutrition, and legal considerations. It explores diverse perspectives from the field, differing from the Alzheimer's Association's stance. Last, it underscores resources available through the Alzheimer's Association, aiming to present a comprehensive perspective on late‐stage care for support and assistance to all involved.

“…Terman, Steinberg, and Hinerman 1 argue that at both the planning and implementation stages of advance directives (ADs), the use of a broader than typical concept of suffering can help accomplish the goal of not living into prolonged years of severe dementia. For both practical and fundamental ethical reasons, this strategy cannot live up to its promise.…”

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confidence: 99%

Broadening the concept of suffering is a less than adequate strategy for respecting patients in advanced dementia

Menzel

2024

Commentary on SA. Terman, KE. Steinberg, and N. Hinerman, "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering"advance directives, AMA code of ethics, dementia, deterioration, Nancy Rhoden, Norman Cantor, Rebecca Dresser, suffering, then-self versus now-self problem, withholding food and water Terman, Steinberg, and Hinerman 1 argue that at both the planning and implementation stages of advance directives (ADs), the use of a broader than typical concept of suffering can help accomplish the goal of not living into prolonged years of severe dementia. For both practical and fundamental ethical reasons, this strategy cannot live up to its promise.The authors are to be lauded for working to make ADs for hastening death in dementia more effective. They have many helpful things to say about ADs and suffering, among them: (1) What is "severe enough suffering" is a subjective judgment, to be made by the patient. There is no "objective" clinical test for it. Since there is not, clinicians should use patients' judgment. (2) Advance care planning should then be driven by patients' judgments about what is, to them, severe enough suffering to warrant not extending life. (3) Both the construal of suffering by Cassel to include the eroding of "integrity" in a person's life and Saunders' conception of "total pain" are insightful expansions of how to understand suffering. 2 (4) Many patients with advanced dementia have difficulty communicating their suffering. (5) ADs need to speak clearly not just to what care should be withheld, but to when it should be. (6)Patient appointment of a health care agent is an important complement to any instructional AD. An agent's leverage in representing the patient is hampered when there is no AD to serve as a guide, and an AD without a patient-chosen agent can languish in the face of inevitable ambiguity and difficulties of interpretation.Notwithstanding these strengths, the authors' effort has a central flaw: it is not just unacceptable suffering that many patients with pro-This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.