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Smajdor invites welcome interrogation of the distance between our philosophical justifications of how we engage people in decisions about healthcare or research, and the ways we do so.1 She notes the implicit elision made between autonomy and informed consent, and argues the latter alone cannot secure the former, proposing a more flexible approach.
As researchers working with people with dementia (PwD), we share Smajdor’s reservations. We argue that an autonomy worthy of respect requires not just decision-making capacity, but also authenticity; the ability to determine for oneself what is good for oneself.2 Furthermore, our relationships support or undermine both capacity and authenticity, and autonomous expression manifests throughout evolving relationships. This invites us to view respect differently—as an ongoing conversation with another person, capable of holding values that may move us. In Smajdor’s terminology, it requires that we recognise them. We describe how we operationalise this in our research.
Autonomy worthy of respect
Three broad arguments usually support respect for autonomy.2 One—owed to JS Mill—holds that permitting individuals free choice promotes utility of all, by helping them fulfil ideas of the good, demonstrating ‘experiments in living’. Another draws from Kant’s categorical imperative; its Formula of Humanity holds that the capacity to determine our own values gives us reason to act, and we ought, therefore, to treat others’ values with the respect we show our own. Lastly, many simply assume ‘liberal neutrality’—an intrinsic value in people being permitted to pursue the …
Twitter @a_wardrope, @NeuroSimon, @Dr_J_M_Dickson
Contributors Discussions between AW, SB, MR and TW raised the initial concerns regarding decision-making by and for PwD that shaped this project and our approach to consent to research participation. AW devised the theoretical argument. DB, SB, MR and TW reviewed relevant empirical literature bearing on the argument. JD reviewed relevant primary care decision-making literature. AW, TW, SB and DB developed the research participation consent procedure sketched in the article. AW drafted the manuscript. All others edited and revised the draft to produce the final manuscript submitted for review.
Funding This study was funded by Health Services and Delivery Research Programme (NIHR150756).
Competing interests None declared.
Provenance and peer review Commissioned; internally peer reviewed.
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