Cognitive Transformation, Dementia, and the Moral Weight of Advance Directives

Walsh, Emily A.

doi:10.1080/15265161.2020.1781955

Cited by 55 publications

(36 citation statements)

References 13 publications

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“…ACP is “the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health care providers, and to record and review these preferences if appropriate” [ 3 ]. An ACP procedure may result in written advance directives (AD); however, for such document to be of any use, it remains important that it is precise and that patients discuss its content with their surrogate decision-maker and update it regularly [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

A Mobile App for Advance Care Planning and Advance Directives (Accordons-nous): Development and Usability Study

Schöpfer¹,

Ehrler²,

Berger³

et al. 2022

JMIR Hum Factors

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Background Advance care planning, including advance directives, is an important tool that allows patients to express their preferences for care if they are no longer able to express themselves. We developed Accordons-nous, a smartphone app that informs patients about advance care planning and advance directives, facilitates communication on these sensitive topics, and helps patients express their values and preferences for care. Objective The first objective of this study is to conduct a usability test of this app. The second objective is to collect users’ critical opinions on the usability and relevance of the tool. Methods We conducted a usability test by means of a think-aloud method, asking 10 representative patients to complete 7 browsing tasks. We double coded the filmed sessions to obtain descriptive data on task completion (with or without help), time spent, number of clicks, and the types of problems encountered. We assessed the severity of the problems encountered and identified the modifications needed to address these problems. We evaluated the readability of the app using Scolarius, a French equivalent of the Flesch Reading Ease test. By means of a posttest questionnaire, we asked participants to assess the app’s usability (System Usability Scale), relevance (Mobile App Rating Scale, section F), and whether they would recommend the app to the target groups: patients, health professionals, and patients’ caring relatives. Results Participants completed the 7 think-aloud tasks in 80% (56/70) of the cases without any help from the experimenter, in 16% (11/70) of the cases with some help, and failed in 4% (3/70) of the cases. The analysis of failures and difficulties encountered revealed a series of major usability problems that could be addressed with minor modifications to the app. Accordons-nous obtained high scores on readability (overall score of 87.4 on Scolarius test, corresponding to elementary school level), usability (85.3/100 on System Usability Scale test), relevance (4.3/5 on the Mobile App Rating Scale, section F), and overall subjective endorsement on 3 I would recommend questions (4.7/5). Conclusions This usability test helped us make the final changes to our app before its official launch.

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Section: Introductionmentioning

confidence: 99%

A Mobile App for Advance Care Planning and Advance Directives (Accordons-nous): Development and Usability Study

Schöpfer¹,

Ehrler²,

Berger³

et al. 2022

JMIR Hum Factors

View full text Add to dashboard Cite

show abstract

“… Walsh wrote, “Having dementia is a cognitive transformative experience and…preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients” [ 74 ]. Walsh’s philosophical concept can be used as a general justification by those who oppose honoring directives that request assisted feeding to cease.…”

Section: Type IV Flaws Omit Strategies Designed To...mentioning

confidence: 99%

Flaws in advance directives that request withdrawing assisted feeding in late-stage dementia may cause premature or prolonged dying

2022

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Background The terminal illness of late-stage (advanced) 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. Aim This 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. Conclusion This 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?

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“…49 Moreover, as Emily Walsh argues, dementia is a cognitive transformation, which changes the way a person views themselves. 50 What Margo would have thought before developing dementia is therefore not a reliable indicator of what she would conclude now.…”

Section: Determining Margo's Authentic Mental Elementsmentioning

confidence: 97%

Advance Directives: The Principle of Determining Authenticity

Carter¹

2022

Hastings Center Report

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In medical ethics, there is a well‐established debate about the authority of advance directives over people living with dementia, a dispute often cast as a clash between two principles: respecting autonomy and beneficence toward patients. In this article, I argue that there need be only one principle in substitute decision‐making: determining authenticity. This principle favors a substituted judgment standard in all cases and instructs decision‐makers to determine what the patient would authentically prefer to happen—based not merely on the patient’s decisions but also on their present settled dispositions. Adhering to this principle entails that, in a significant range of cases, an advance directive can (and indeed ought to) be overruled.

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Cognitive Transformation, Dementia, and the Moral Weight of Advance Directives

Cited by 55 publications

References 13 publications

A Mobile App for Advance Care Planning and Advance Directives (Accordons-nous): Development and Usability Study

A Mobile App for Advance Care Planning and Advance Directives (Accordons-nous): Development and Usability Study

Flaws in advance directives that request withdrawing assisted feeding in late-stage dementia may cause premature or prolonged dying

Advance Directives: The Principle of Determining Authenticity

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