Hojjat Soofi

Anna Smajdor offers a fresh perspective on why assent is morally required in research practices involving people who (are considered to) lack the capacity to consent.1 Smajdor holds that seeking (and documenting) assent can be a mechanism to recognise those who (are considered to) lack the capacity to consent as participants ‘in our moral sphere’.1 Smajdor suggests that this approach can function as a counter to the ‘reifying’ attitudes (often) taken towards people who (are judged to) lack the capacity to consent.1 Smajdor’s approach also offers novel resources to overcome what Giles Birchley characterise as ‘the problems of the binary approach to incapacity’.2 Particularly in the context of dementia research, Smajdor’s proposal can be seen as a promising direction for going beyond the conventional (primarily) ‘protective’ approach taken by research ethics committees.3 The conventional approach asks researchers to obtain autonomous authorisation from research participants and (at times, implicitly) relies on the assumption that the ability to give consent is the only autonomy-related ability or, in other words, the assumption that the inability to give consent indicates vulnerability due to non-autonomy/non-agency. But this assumption, as Smajdor notes, seems problematic. The ability to assent (or dissent) is also an autonomy-related ability. Many …

Residents with dementia in long-term care facilities (LTCFs) often receive antipsychotic (AP) medications without clear clinical indications. One non-clinical factor influencing the use of APs in LTCFs is low staff levels. Often, using APs is viewed and rationalised by healthcare professionals in LTCFs as a lesser evil option to manage low staff levels. This paper investigates the ethical plausibility of using APs as a lesser of two evils in resource-constrained LTCFs. I examine the practice vis-à-vis the three frequently invoked conditions of lesser evil justifications as specified in the wider philosophical literature. These conditions include (1) the necessity condition, (2) the condition of sensitivity to both deontic (ie, constraint-based) and non-deontic (ie, outcome-based) considerations and (3) the commensurability condition. I argue that there are considerable difficulties in demonstrating that the practice in question satisfies the conditions of lesser evil justifications. In particular, there are major difficulties in satisfying the condition of sensitivity to deontic and outcome-based considerations, and the commensurability condition. I also argue that the current philosophical debate on lesser-evil justifications is not straightforwardly applicable to the practice of using APs for non-clinical purposes in LTCFs. I contend that caregivers are not so-called ‘generic’ agents, and the assumed rarity of lesser evil cases is questionable. I conclude that until further work is done to resolve these issues, the lesser evil reasoning cannot be, at least routinely, used to formulate robust moral justifications for the practice in question.

I thank the commentators for engaging with my work and for their thoughtful and constructive contributions. I also extend my gratitude to the editors of the _Journal of Medical Ethics_ for facilitating such a lively scholarly dialogue on the topic. In this response paper, I will briefly address some of the key issues raised by the commentators and attempt to bring into conversation different viewpoints put forward by the commentators. Questioning whether my proposed account evades the objection of redundancy of the dignity talk, Barclay 1 invites me to clarify why my position cannot be framed as: because of their inherent, basic, capabilities all human beings have moral worth, which grounds obligations on others to ensure they live a flourishing life [Barclay, XX]. 1 In response, I raise two points. First, the above formulation would be under-specified about both the forms of capabilities and moral worth...

People with dementia at times exhibit threatening and physically aggressive behavior toward care staff in residential aged care facilities (RACFs). Current clinical guidelines recommend judicious use of antipsychotic (AP) medications when there is an immediate risk of harm to care staff in RACFs and non-pharmacological interventions have failed to avert the threats. This article examines an account of how this recommendation can be ethically defensible: caregivers in RACFs may have a prima facie ethical justification, in certain cases, to use APs as an act of self-defense. The author examines whether such uses of APs meet the three commonly invoked conditions of ethically permissible acts of self-defense—namely, the conditions of liability, proportionality, and necessity—and argues that such conditions obtain only in a restricted range of cases. The liability constraint can be satisfied if residents are the only ones who are causally responsible for the threats they pose. Further, the condition of proportionality obtains if there is sufficient objective ground to demonstrate that the harm of using the medications does not outweigh the good to be secured. Lastly, the necessity condition obtains when the medications are used at their lowest effective dosage and caregivers in RACFs can reasonably assume that, for the purpose of averting threats posed by residents, the use of APs is the only available course of action. Not meeting any of these fairly stringent conditions renders uses of APs as acts of self-defense in RACFs morally impermissible actions.

Appeals to the dignity of people with dementia are widespread in the current literature on dementia care. One influential account of dignity in the wider philosophical and bioethical literature that has remained underexplored in the context of dementia care is that of Martha Nussbaum. This paper critically examines Nussbaum’s account of dignity and aims to determine what moral guidance this account can offer for the provision of care to people with dementia. To that end, first, I identify four possible objections to appeals to dignity in dementia care. These objections are (1) redundancy of the dignity talk, (2) exclusionary implications, (3) reliance on (suspect forms of) speciesism and (4) unclear practical implications. Then, I discuss whether, and to what extent, Nussbaum’s account of dignity can overcome these objections. I argue that Nussbaum’s account, in its original form, struggles to overcome the problem of exclusionary implications and consequently the problem of unclear practical implications. I argue for a modified version of Nussbaum’s account of dignity. I demonstrate that this modified version can better overcome all of the four objections, and it provides relatively clearer moral guidance for the provision of care to people with dementia. The modified version of Nussbaum’s account is predicated on a novel dementia-specific model of flourishing, which draws on Kitwood and Bredin’s empirically informed list of indicators of well-being for people with dementia.

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.

In this paper, I critically examine Kitwood's account of personhood for people with dementia. His account has been influential in supporting appeals to personhood in both clinical and bioethical literature on dementia care. I demonstrate that Kitwood's account does not run into common objections against invoking personhood as a normative notion, namely, the objection of exclusionary implications and the objection of redundancy. I argue, however, that Kitwood's account suffers from two other major conceptual issues. These include (a) unreasonable social contingency, and thus, precariousness, of his notion of personhood for people with dementia; and (b) insufficient theoretical connection between his account of personhood and his proposed list of indicators of well‐being for people with dementia. Despite these issues, I do not agree with the following view: that, in the context of dementia care, scholars should refrain from appealing to personhood considerations. Instead, I defend the view that while Kitwood fails to offer a compelling theoretical account of personhood of people with dementia, his empirically driven list of indicators of well‐being and his notion of malignant social phycology seem to be sensitive to key ethical considerations relevant to dementia care. I propose that we pursue alternative ways of explaining what is morally (un) desirable about them without (explicit) appeal to personhood.

Sigrid Fry-Revere’s The Kidney Sellers: A Journey of Discovery in Iran, an allegedly first-hand examination of the Iranian paid kidney donation model, has been criticized by Koplin in an essay formerly published in the Monash Bioethics Review. Koplin especially challenges Fry-Revere’s claim that financially compensating kidney vendors might facilitate altruistic kidney donation. The current situation in Iran, according to Koplin, suggests that the market model has undermined altruistic donation. On this point, this commentary tries to show that healthcare policymakers in Iran no longer see the Iranian paid kidney donation model as a sustainable and ethically justifiable status quo. Briefly touching on the criticisms that have been made even by some positive commentators of the Iranian model, this commentary aims to call attention to the fact that the current dynamic within healthcare policymaking in Iran seeks primarily to decrease its reliance on the organ market instead of revising and modifying it. This complicates the plausibility of any kind of extrapolation, replication or extracting empirical support from the Iranian model to create organ markets in other countries, for example, as Fry-Revere suggests to conduct a trial of a financially incentivized kidney donation scheme in the US. The conclusion is that the Iranian healthcare system should tackle the organ shortage through increasing altruistic living and postmortem kidney donations. This might also provide, finally, a space for conducting extensive and long-term follow-up studies on well-being, satisfaction and social integration of Iranian kidney vendors.

The traditional researcher-driven environment of medical knowledge production is losing its dominance with the expansion of, for instance, community-based participatory or participant-led medical research. Over the past few decades, sociologists of science have debated a shift in the production of knowledge from traditional discipline-based to more socially embedded and transdisciplinary frameworks. Recently, scholars have tried to show the relevance of Mode 2 knowledge production to medical research. However, the existing literature lacks detailed clarifications on how a model of Mode 2 knowledge production can be constructed in the context of medical research. This paper calls for such further clarifications. As a heuristic means, the advocacy for a controversial experimental stem cell therapy is examined. It is discussed that the example cannot be considered a step towards Mode 2 medical knowledge production. Nonetheless, the example brings to the fore some complexities of medical knowledge production that need to be further examined including: the shifting landscape of defining and addressing vulnerability of research participants, the emerging overlap between research and practice, and public health implications of revising the standard notions of quality control and accountability.