Supported decision-making has become popular among policymakers and mental health advocates as a means of reducing coercion in mental healthcare. Nevertheless, users of psychiatric services often seem equivocal about the value of supported decision-making initiatives. In this paper we explore why such initiatives might be rejected or ignored by the would-be beneficiaries, and we reflect on broader implications for care and coercion. We take a critical medical humanities approach, particularly through the lens of entanglement. We analyse the narratives of 29 people diagnosed with mental illness, and 29 self-identified carers speaking of their experiences of an Australian mental healthcare system and of their views of supported decision-making. As a scaffolding for our critique we consider two supported decision-making instruments in the 2014 Victorian Mental Health Act: the advance statement and the nominated person. These instruments presuppose that patients and carers endorse a particular set of relationships between the agentic self and illness, as well as between patient, carer and the healthcare system. Our participant narratives instead conveyed ‘entangled’ relations, which we explore in three sections. In the first we show how ideas about fault and illness often coexisted, which corresponded with shifting views on the need for more versus less agency for patients. In the second section, we illustrate how family carers struggled to embody the supported decision-making ideal of the independent yet altruistic nominated person, and in the final section we suggest that both care and coercion were narrated as existing across informal/formal care divisions. We conclude by reflecting on how these dynamic relations complicate supported decision-making projects, and prompt a rethink of how care and coercion unfold in contemporary mental healthcare.
- medical anthropology
- medical humanities
- patient narratives
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Contributors RK led the study’s interdisciplinary research team, and AB was a member of the project advisory group. MS is a psychiatrist who has previously worked in the Victorian healthcare system. Transcripts were analysed in a series of iterative steps. Initially they were read closely by MS and RK, discussed broadly and emergent themes noted. Subsequently MS and RK conducted a genre-traversing literature review, returned to the transcripts, and watched corresponding videos or listened to audio recordings. Finally overarching themes were generated and illustrative quotes selected to create a first draft of the paper. FC and AB joined the writing process, contributing to the structure, narrative analysis and the identification of relevant literature. Subsequently, further drafts were created collaboratively.
Funding This project was funded by an Australian Research Council Linkage Project grant (LP130100557) and supported by partner organisations including the Victorian Department of Health and Human Services, Mind Australia, Neami National, Wellways, Tandem Carers, Victorian Mental Illness Awareness Council, and Healthdirect Australia. FC is supported by Wellcome Trust (209513/Z/17/Z).
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval This research project has been conducted in accordance with the National Statement on Ethical Conduct in Human Research (the National Statement) issued by the National Health and Medical Research Council (NHMRC) in Australia. Ethics approval for the research project was granted by Monash University Human Research Ethics Committee (MUHREC) (CF13/2980 – 2013001607).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement No data are available.
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