Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems

Sabbata, Kevin De

doi:10.3389/fpsyt.2020.571722

Cited by 13 publications

(19 citation statements)

References 95 publications

(181 reference statements)

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“…Autonomy, which is defined as is the ability of an individual to make their own choices without manipulation by external forces, 24 is recognized as an inviolable right regardless of mental incapacity. 25,26 Clinical ethics recommends that, to the greatest extent possible, patients be engaged in decisions involving their own care regardless of their cognitive capacity. 27,28 To this end, some clinicians in our study described an approach to ACP for PWD consistent with "supported decision-making" and "facilitated decision-making."…”

Section: Discussionmentioning

confidence: 99%

US clinicians' perspectives on advance care planning for persons with dementia: A qualitative study

Tjia

D’Arcangelo

Carlston

et al. 2022

J American Geriatrics Society

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Background Although advance care planning (ACP) for persons with dementia (PWD) can promote patient‐centered care by aligning future healthcare with patient values, few PWD have documented ACPs for reasons incompletely understood. The objective of this paper is to characterize the perceived value of, barriers to, and successful strategies for completing ACP for PWD as reported by frontline clinicians. Methods Qualitative study using semi‐structured interviews (August 2018–December 2019) with clinicians (physicians, nurse practitioners, nurses, social workers) at 11 US health systems. Interviews asked clinicians about their approaches to ACP with PWDs, including how ACP was initiated, what was discussed, how carepartners were involved, how decision‐making was approached, and how decision‐making capacity was assessed. Results Of 75 participating generalist and specialty clinicians from across the United States, 61% reported conducting ACP with PWD, of whom 19% conducted ACP as early as possible with PWD. Three themes emerged: value of early ACP preserves PWD's autonomy in cases of differing PWD carepartner values, acute medical crises, and clinician paternalism; barriers to ACP with PWD including the dynamic and subjective assessment of patient decision‐making capacity, inconsistent awareness of cognitive impairment by clinicians, and the need to balance patient and family carepartner involvement; and strategies to support ACP include clarifying clinicians' roles in ACP, standardizing clinicians' approach to PWD and their carepartners, and making time for ACP and decision‐making assessments that allow PWD and carepartner involvement regardless of the patients' capacity. Conclusions Clinicians found early ACP for PWD valuable in promoting patient‐centered care among an at‐risk population. In sharing their perspectives on conducting ACP for PWD, clinicians described challenges that are amenable to changes in training, workflow, and material support for clinician time. Clinical practices need sustainable scheduling and financial support models.

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Section: Discussionmentioning

confidence: 99%

US clinicians' perspectives on advance care planning for persons with dementia: A qualitative study

Tjia

D’Arcangelo

Carlston

et al. 2022

J American Geriatrics Society

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“…As we have argued elsewhere, the creation of new policies must be grounded in the recognition that sexuality is fundamental to embodied self-expression and relationality, which are primary means of engagement for persons living with severe and persisting cognitive impairment such as dementia ( Grigorovich & Kontos, 2018 ; Kontos et al, 2016 ). This could entail challenging or amending existing laws and policies to ensure that they are not overly restrictive of voluntary and uncoerced sexual expression, and that they are consistent with human rights law around disability that enables access to mechanisms of supported decision-making so that persons living with dementia can exercise and enjoy the right to legal capacity ( De Sabbata, 2020 ; UN General Assembly, 2007 ). One approach to this could include the creation of legal documents that enable people living with dementia to communicate their values, wishes, and preferences regarding sexual expression, and to select another person to make decisions on their behalf should they become incapable.…”

Section: Discussionmentioning

confidence: 99%

Dementia and sexuality in long-term care: Incompatible bedfellows?

et al. 2021

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Despite the recognized benefits of sexual expression and its importance in the lives of people living with dementia, research demonstrates that there are multiple barriers to its positive expression (e.g., expression that is pleasurable and free of coercion, discrimination, and violence) in RLTC homes. These barriers constitute a form of discrimination based on age and ability, and violate the rights of persons living with dementia to dignity, autonomy, and participation in everyday life and society. Drawing on a human rights approach to dementia and sexual expression, we explored the experiences of diverse professionals, family members, and persons living with dementia with explicit attention to the ways in which macro-level dynamics are influencing the support, or lack thereof, for sexual expression at the micro level. Focus groups and in-depth interviews were conducted with 27 participants, and the collected data were analyzed thematically. While all participants acknowledged that intimacy and sexual expression of persons living with dementia should be supported, rarely is such expression supported in practice. Micro-level factors included negative attitudes of professionals toward sexual expression by persons living with dementia, their discomfort with facilitating intimacy and sexual expression in the context of their professional roles, their anxieties regarding potential negative reactions from family members, and concerns about sanctions for failing to prevent abuse. In our analysis, we importantly trace these micro-level factors to macro-level factors. The latter include the cultural stigma associated with dementia, ageism, ableism, and erotophobia, all of which are reproduced in, and reinforced by, professionals’ education, as well as legal and professional standards that exclusively focus on managing and safeguarding residents from abuse. Our analysis demonstrates a complexity that has enormous potential to inform future research that is critically needed for the development of educational initiatives and to promote policy changes in this area.

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“…The UN Challenge to Guardianship and Surrogate Decision-Making by Rebecca Dresser engage in a form of supportive decisionmaking, and the CRPD simply includes people with disabilities in this larger group. 8…”

Section: The Un Provisionsmentioning

confidence: 99%

“…Rather than acting alone, people interact with others as they consider their options. Thus, most people engage in a form of supportive decision‐making, and the CRPD simply includes people with disabilities in this larger group 8 …”

Section: Crpd Justificationsmentioning

confidence: 99%

The UN Challenge to Guardianship and Surrogate Decision‐Making

Dresser¹

2022

Hastings Center Report

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In 2006, the United Nations issued the Convention on the Rights of Persons with Disabilities. The Convention, together with an accompanying commentary, urges governments to abandon laws authorizing guardianship and substitute decision‐making for people with intellectual disabilities and to replace them with supportive decision‐making laws that give all individuals the freedom to make choices reflecting their “will and preferences.” Although critics point to ethical and legal problems with this approach, the Convention and commentary offer guidance to clinicians, ethicists, and others involved in evaluating medical decision‐making. Whether or not it leads to formal legal action, the Convention rightly urges us to give people with cognitive impairments a greater role in decisions about their lives.

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Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems

Cited by 13 publications

References 95 publications

US clinicians' perspectives on advance care planning for persons with dementia: A qualitative study

US clinicians' perspectives on advance care planning for persons with dementia: A qualitative study

Dementia and sexuality in long-term care: Incompatible bedfellows?

The UN Challenge to Guardianship and Surrogate Decision‐Making

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