By Sarah Ward, JBI Intern
Despite ample literature, defining autonomy and applying it in healthcare contexts has been challenging (Slowther, 2007). Broadly described as the capacity to make informed and voluntary decisions, autonomy is complex in the context of dementia, particularly in advanced stages, where cognitive decline alters the decision-making capacities of individuals (Taylor, 2018). Such complexities present ethical challenges concerning the extent to which prior expressed wishes through the use of advance directives should be upheld. This is especially challenging for individuals whose current preferences diverge from earlier stated desires.
Addressing the complexities surrounding autonomy and dementia care requires an examination of existing ethical frameworks and their adaptability. We have seen this explored in three articles published in the Journal of Bioethical Inquiry.
Dementia Autonomy from the Perspectives of Huang et al., Soofi and Dubljevic
In Rethinking the Precedent Autonomy, Current Minimal Autonomy, and Current Well-Being in Medical Decisions for Persons with Dementia, Huang et al. (2022) explore the ethical tensions between respecting past autonomous decisions and recognising the present well-being and preferences of persons living with dementia. ‘Traditional’ bioethical frameworks, such as that developed by Buchanan and Brock (1990, 31), often prioritise precedent autonomy, in the form of advance directives, under the assumption that such directives reflect the individual’s rational self. However, Huang et al (2022) suggest that such approaches may be ethically inadequate when a person living with dementia exhibits signs of contentment or expresses wishes that contradict prior instructions.
To counter Buchanan and Brock’s precedent autonomy, Huang et al. (2022) propose a decision-making model that considers what they believe to be the three most important and interrelated dimensions: precedent autonomy, current minimal autonomy and present well-being. They suggest ethical care must account for the lived reality of individuals rather than rigidly applying past directives. In advocating for a dynamic understanding of dementia autonomy that honours both past and present values, Huang et al. (2022) challenge foundational bioethical accounts of personhood and autonomy. What they suggest is a modified integrated approach that better supports individual dignity and compassionate care in the face of cognitive decline to address current grey areas (Huang et al. 2022).
Figure 1: Adapted from Buchanan and Brock (1990) and Huang et al. (2022).
Similarly, in Respect for Autonomy and Dementia Care in Nursing Homes, Soofi critiques Beauchamp and Childress’s (2013) account of autonomy, arguing that their emphasis on decisional capacity, intentionality, and understanding is too rigid for use in dementia healthcare. The framework excludes individuals with diminished cognitive function from participating in meaningful decisions about their own care. Soofi (2022) proposes a revised model that redefines autonomy as a gradual process and is largely based on the concept of process consent, which aims to overcome the moral inadequacy of single-point consent, recognising that decision-making can change over time and involve fluctuating levels of understanding and engagement.
Soofi’s model of autonomy as a gradual process also highlights the importance of relational ethics, with the need for patient welfare to be of the utmost importance when making decisions regarding healthcare. Soofi (2022) advocates for patient welfare to be promoted in even seemingly trivial ways to promote “preference satisfaction”. With the premise that being able to choose and having a level of control increases the physical and psychological well-being of residents, even small decisions such as what they would like to eat for lunch or their preference for evening activities (Madrigal et al., 2022). Caregivers and doctors under this model are encouraged to recognise and interpret expressions of preference and uphold them to support dignity even when full decision capacity is compromised. Rather than excluding persons living with dementia from making decisions impacting their care, this framework involves individuals in shared decision-making while still respecting lived experiences and present abilities.
Image: Unsplash – Relational care in action: Small acts of choice and agency can enhance dignity and wellbeing in dementia care
In The Principle of Autonomy and Behavioural Variant Frontotemporal Dementia, the principle of autonomy in dementia is challenged through the rare form of dementia known as behavioural variant frontotemporal dementia (bvFTD). Unlike Alzheimer’s disease, which typically only affects memory, bvFTD affects impulse control, personality and judgment (Leocadi et al., 2023). As a result, individuals may display socially inappropriate or risky behaviours that do not align with their personality, raising questions about whether such actions can be considered autonomous (Manes et al., 2011). bvFTD exposes the insufficiency of standard autonomy frameworks that rely on intentionality and rational decision making.
To address the challenges of bvFTD, Dubljevic (2020) calls for a redefinition of autonomy that takes into account socio-moral judgment and accounts for degrees of compulsion. For individuals with bvFTD, while decisions may appear to be deliberate, there is a lack of self-awareness or moral agency typically required to fit the traditional definitions of autonomy (Wolfe, 2017). As such, this further complicates healthcare from an ethical viewpoint. Dubljevic (2020), similarly to Soofi (2022) and Huang et al. (2022), argues for change to ethical decision making in healthcare with the need to move beyond cognitive capacity as a sole measure of autonomy, suggesting a broader framework that evaluates the coherence of behaviour with the individual’s identity and moral values over time.
Balancing past and present
The progressive nature of diseases such as dementia, with side effects of cognitive decline, challenges ‘traditional’ concepts of autonomy, which are a core guideline in some ethical codes in the healthcare sector. For example, the (yet to be revised) Australian Medical Association’s Code of Ethics (2016) states that doctors must “respect the right of a patient to make their own health care decisions”. Highlighted by Huang et al. (2022), the use of advance directives may no longer reflect an individual’s current experiences while respecting their wishes and past wishes, particularly in cases where individual well-being contradicts euthanasia or refusals of care. The disregard of past wishes also risks undermining the sense of identity through precedent autonomy. When past values, beliefs and preferences fade with cognitive decline, but individuals still show signs of contentment with their current care, it may be more appropriate to base medical decisions on current quality of life (Huang et al., 2022). The same frameworks similarly complicate the respect for autonomy in healthcare and in instances of bvFTD (Huang et al., 2022; Soofi, 2022; Dubljevic, 2020).
Read together, Huang et al. (2022), Soofi (2022), and Dubljevic (2020) make a clear case for an ethical obligation to reimagine frameworks that dictate levels of autonomy for people living with dementia, and the importance of developing a responsive, compassionate midpoint that balances individuals’ past wishes and current needs. Convincingly, this involves the recognition that autonomy is an evolving capacity that fluctuates with mental composition and acknowledgement of autonomy in dementia care as a principle that needs to be applied in a context-sensitive case-by-case approach.
Sarah Ward is an intern at the the Journal of Bioethical Inquiry andand fourth year Forensic Science/Criminology student at Deakin University.
Correspondence: wardsa@deakin.edu.au
References
Dubljevîc, V. 2020. The Principle of Autonomy and Behavioural Variant Frontotemporal Dementia. Journal of Bioethical Inquiry 17. https://doi.org/10.1007/s11673-020-09972-z
Huang, Y., Cong, Y., and Wang, Z. 2022. Rethinking the Precedent Autonomy, Current Minimal Autonomy, and Current Well-Being in Medical Decisions for Persons with Dementia. Journal of Bioethical Inquiry 19, https://doi.org/10.1007/s11673-021-10159-3
Leocadi, M., Canu, E., Paldiono, A., Agosta, F., and Filippi, M. 2023. Awareness impairment in Alzheimer’s disease and frontotemporal dementia: a systematic MRI review. Journal of Neurology 270. https://doi.org/10.1007/s00415-022-11518-9
Madrigal, C., Mogle, J., Abbott, K, et al. 2022. The Association Between Preference Satisfaction and Satisfaction with Overall Care for Nursing Home Residents. Journal of Aging & Social Policy 34(5). https://doi.org/10.1080/08959420.2022.2029265
Manes, F., Torralva, T., Ibanez, A., Roca, M., Berkinschtein, T., and Gleichgerrcht, E. 2011. Decision-Making in Frontotemporal Dementia: Clinical, Theoretical and Legal Implications. Dementia and Geriatric Cognitive Disorders 32(1). https://doi.org/10.1159/000329912
Soofi, H. 2022. Respect for Autonomy and Dementia Care in Nursing Homes: Revising Beauchamp and Childress’s Account of Autonomous Decision-Making. Journal of Bioethical Inquiry 19. https://doi.org/10.1007/s11673-022-10195-7
Taylor, J.S. 2018. Introduction: Autonomy in Healthcare. HEC Forum 30. https://doi.org/10.1007/s10730-018-9360-9
Wolfe, S.E. 2017. The meaning of autonomy when living with dementia. PhD thesis, University of Liverpool.