Respect for Autonomy and Dementia Care in Nursing Homes: Revising Beauchamp and Childress’s Account of Autonomous Decision-Making

Abstract

Specifying the moral demands of respect for the autonomy of people with dementia (PWD) in nursing homes (NHs) remains a challenging conceptual task. These challenges arise primarily because received notions of autonomous decision-making and informed consent do not straightforwardly apply to PWD in NHs. In this paper, I investigate whether, and to what extent, the influential account of autonomous decision-making and informed consent proposed by Beauchamp and Childress has applicability and relevance to PWD in NHs. Despite its otherwise practical orientation and suitability for acute care settings, I identify three problems with this account when applied to PWD in NHs. These problems include (1) intentionality as an all-or-nothing condition of autonomous decision-making, (2) construing consent as one-off authorization, and (3) unresolved ambiguities around the primacy of precedent autonomy over best interest considerations. To address these problems, I propose and defend a number of revisions to Beauchamp and Childress’s account. First, I suggest that we consider intentionality as a non-binary criterion of autonomous decision-making. Second, I argue for a model of process consent to overcome the moral inadequacy of construing consent as one-off authorization in NHs. And, to overcome the third problem, I suggest accounting for both precedent and extant autonomy of PWD, considering mandates of precedent autonomy not as prescriptive but as informative, and drawing a less rigid distinction between autonomy considerations and best interest judgements. I conclude that this revised version of Beauchamp and Childress’s account fares better than the original version in capturing relevant autonomy considerations to care for PWD in NHs.

Why we have duties of autonomy towards marginal agents

“…30 What it means to respect the autonomy of patients with diminished autonomy, by contrast, they do not address. This leads, among other things, to neglecting patients with mild or moderate dementia, as Hojjat Soofi has pointed out [ 84 ].…”

Dignity as a Central Issue in Treating Patients with Dementia Associated with COVID-19 Infection

“…Respecting their autonomy entails a repeated, multi-step process of evaluating their choices and, whenever decisions are not taken autonomously, involving family members or friends in the decision-making process or even acting without a formal agreement if specific medical procedures are essential for the patient’s well-being. However, as some authors have recently emphasized, respect for patients with dementia has other particular issues, such as the optionality of intentionality as a prerequisite step for validating autonomy or increased ambiguities centering the importance of precedent autonomy over beneficence [ 52 ]. The latter is especially important in association with COVID, as autonomy was potentially limited anyway through quarantine and isolation, which were often not very well (or at all) understood by this social group, increasing the contagion risk for others, including family members and friends.…”

Capacity to Consent of People with Dementia: a Narrative Review from an Ethical Perspective

“…7 Last, according to Beauchamp and Childress, respect for autonomy is based on the concept that every person is deserving of respect and has the capacity to determine his or her own future. 8 The principle to do good, often known as the principle of beneficence, is in danger when researchers conduct studies on dementia patients. In some situations, including those where a research study includes more than minimal risk to the subject and at the same time there is no guarantee of benefit for the participant, subjecting incompetent participants to research may even constitute a violation of the duty to do no harm to the patient.…”