A new study by researchers from Mental Health and Justice‘s ‘Supporting Advance Directives’ workstream, in partnership with the charity Bipolar UK, has explored how people living with bipolar disorder feel about the idea of a ‘self-binding directive’ which could provide people with a means of giving instructions to clinicians to overrule treatment refusals during future episodes of severe illness. They are designed to give an individual autonomy over their care during future periods when illness renders them unable to make an informed decision about medical treatment. This study was co-produced within a multi-disciplinary team, including ethical, clinical, and legal expertise, as well as lived experience of bipolar disorder and advance decision-making.

This paper, published in The Lancet Psychiatry (July 2021 issue), shows substantial support among people with lived experience of bipolar disorder and analyses their reasons for endorsement. At the same time, it explores the reasons given by a significant minority of respondents who were either ambivalent to, or actively against, the idea of such directives.

Alongside the article is a piece by Bethlem Gallery artist Beth Hopkins ‘Self binding directives through making’ which features reflections and images of artwork inspired by the study. Hopkins, an artist with lived experience of bipolar, has been part of the collaboration between Bethlem Gallery and the Mental Health and Justice project since November 2019 when she began a year-long dialogue with researchers Tania Gergel and Lucy Stephenson. Beth’s work as an artist researcher reflects on some of the issues and concepts which emerge from their investigations.

Bringing together such powerful images with the verbal data and analysis offers a rich and innovative way to represent the lived experience of survey participants.

The complete dataset from the study is available to access here.

Gergel T, Das P, Owen G, et al. Reasons for endorsing or rejecting self-binding directives in bipolar disorder: a qualitative study of survey responses from UK service users. Lancet Psychiatry 2021; published online May 20. http://dx.doi. org/10.1016/S2215-0366(21)00115-2.Beth Hopkins is an artist working closely with research into advanced directives. Her interest in binding as an art form, her previous experience writing her own advanced directive, and her long standing practice as an artist researcher distinguish her as an expert in her field.

Header image: Identity drawing (2021). Credit: Beth Hopkins.