By Hojjat Soofi.
There are increasing calls to offer more dignity-promoting care to people with dementia, particularly in long-term care settings.
In Australia, the recent Royal Commission into Aged Care Quality and Safety recommends revising the foundational principles that underpin current care practices in residential aged care facilities (RACFs), which are home to many people with dementia. The Commission’s final report calls for a new Act and emphasises the obligation to provide dignity-promoting care as a key principle that should guide the implementation of the new Act.
But what do we mean by dignity-promoting dementia care?
This was one of the main questions I aimed to address in my PhD thesis. My thesis was on the ethics of using antipsychotic (AP) medications for people exhibiting behavioural and psychological symptoms of dementia (BPSD) in RACFs. BPSD refer to non-cognitive symptoms in people with dementia ranging from aggression, agitation, and depression to hallucination and delusion. The use of APs for managing BPSD remains a controversial practice in RACFs, given the significant body of evidence documenting adverse effects such as increased mortality risk. One major concern is that (because of their potentially sedative effects) APs are used solely as a controlling behaviour measure in RACFs. Such restrictive practices amount to chemical restraint and are thought to violate the residents’ dignity.
I shared this concern. As a pharmacist by training, I was aware that APs are used extensively as a form of chemical restraint to, for instance, decrease the burden of care on caregivers in RACFs. In fact, this was one of my main motivations for focusing on the ethics of using APs in RACFs as my thesis topic.
I soon realised, however, that dignity can also be invoked to justify the use of APs as a form of chemical restraint, that is, as a behaviour-controlling measure. At times, people with dementia exhibit self-harming or other-harming behaviour. For example, they may try to damage property or engage in physical violence towards caregivers or their fellow residents in RACFs. Antipsychotic treatment can be a last resort to manage such behaviours, when the risk of harm to self or others is substantial, non-pharmacological interventions fail, and no treatable cause (such as undermanaged pain) is found.
In such cases, there is surely a welfare-based justification for using APs as a (last resort) form of chemical restraint. But there seems to be a dignity-based justification at play as well. Intuitively, being physically aggressive towards others and/or damaging property in RACFs do not strike us as dignified conditions.
I was puzzled by the conflicting demands of the dignity talk. On the one hand, all forms of chemical restraint are restrictive. Clearly, there’s some dignity-undermining quality to limiting the freedom of people with dementia in RACFs. On the other hand, some forms of chemical restraint may be dignity-promoting. At times, using APs, though in the form of chemical restraint, may seem to be the only viable option to restore or promote the dignity of people with dementia.
To address the above problem (and other problems with invoking dignity as a moral concept), I conducted a detailed investigation into different accounts of the dignity of people with dementia. My initial conclusion was somewhat negative. I found problematic aspects in all the different accounts of the dignity I examined. I argued that none of them can robustly tell us what counts as dignity-promoting dementia care. But after further analysis, I found promise in a revised version of the account of dignity proposed by philosopher Martha Nussbaum.
My recent contribution to the Journal of Medical Ethics outlines and defends that revised version of Nussbaum’s account. The basic idea is this: people with dementia have dignity in virtue of having some (basic) capabilities, the exercise of which are indicative of a flourishing human life. To further support this idea, I propose a dementia-specific list of capabilities and, correspondingly, a dementia-specific model of flourishing (yes, it’s possible to flourish in RACFs!).
According to my proposed account, dignity-promoting dementia care are those forms of care that “provide external opportunities and material resources for people with dementia to exercise to the greatest extent possible and as many as possible of their extant capabilities”. This account acknowledges that dignity is a multi-dimensional concept: dignity considerations are not reducible to welfare or autonomy considerations. I draw on Nussbaum’s insightful idea that dignity is inclusive of but more expansive than both autonomy and welfare considerations. Further, by defining dignity in terms of flourishing, we can shift our focus from singular instances of care delivery to wider care plans in RACFs.
In short, a particular treatment or intervention is dignity-promoting care to the extent to which that treatment or intervention is part of a wider plan of care designed to facilitate the flourishing of people with dementia in RACFs.
Author: Hojjat Soofi
Affiliations: Department of Philosophy, Macquarie University
Competing interests: None declared
Social media accounts of post author: @hojjatsoofi