The Bipolar UK survey on ‘self-binding’ advance directives is published in The Lancet Psychiatry

Back in 2017 many members of the Bipolar UK community took part in an internet survey about advance care-planning organised by researchers from the Mental Health and Justice Project at King’s College London. Thanks to the many people who participated, the Bipolar UK survey provided us with a large and incredibly rich set of data, telling us about how people living with bipolar and their families felt about advance decision-making in relation to mental health, and about any experiences they might have had already. Not only has this information already resulted in a number of extremely valuable publications to inform medical and legal research, it has also had a direct impact on policy. For more about this work and for links to the publications, please see my previous blog post. 

We are now thrilled to inform you that a paper, ‘Reasons for endorsing or rejecting ‘self-binding directives’ in bipolar disorder: a qualitative study of survey responses from UK service users.’, which analyses some of the survey responses, will be published and openly available in The Lancet Psychiatry. The Lancet Psychiatry is the most widely-read and influential international journal for research in psychiatry. This means that the voices of the Bipolar UK Community will achieve an international platform, through which they may be able directly to influence developments of understanding and practice in clinical, legal, and international human rights contexts.

What is a self-binding statement?

Participants were asked “Some people think a ‘self-binding statement’ is a good idea. This states that the person wants the contents of their advance care plan to be respected even if they no longer agree with it during an episode of illness. Do you think this is a good idea?” This was followed by an open question “Why do you think this is?”.  565 people with bipolar answered these questions. It was fascinating to see how so many participants (82%) endorsed the idea of a ‘self-binding directive’, with the vast majority suggesting that severe illness brought about a major and determinate shift in thinking which was a distortion of their views when well, and which rendered them unable to make informed decisions about treatment. At the same time, a smaller group of respondents clearly rejected the idea, with many feeling that their thought processes and decisions remained valid when unwell and should not be overruled. The main factor for those who expressed ambivalence was concerns about logistics, such as how to ensure that the document remained up to date.

The high level of endorsement can be seen as evidence to suggest that clinicians and policy makers should create provision for these type of documents. While human rights activists may seek to abolish involuntary treatment, it appears that many people with bipolar rely on involuntary treatment as a safety net, to ensure that they receive the medical treatment they need when severely unwell. At the same time, the strength of responses from those who rejected or were ambivalent clearly shows that this view is not universal and that any provision and use of such documents must not be imposed on those who do not want it and must be carefully monitored.

Alongside this article, will be published a piece, also freely available, by the artist Beth Hopkins, entitled ‘Self-binding directives through making’, featuring her reflections and images of some of her artwork inspired by this research .  Beth, who herself has bipolar, has been working with the Bethlem Gallery and our team as part of a wider collaboration with the Mental Health and Justice Project. 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 and we have all found it extremely moving. Beth is hosting a series of creative workshops online over the next few months, in which she will work with people with bipolar to reflect on the process of creating ‘self-binding directives’. You can find more details on Beth’s work and how to join.

For me, as both a researcher and a member of Bipolar UK, who has already benefited from the use of this type of ‘advance directive’, it is fantastic to see the lived experience of bipolar playing such a key and high profile role in informing academic research. Dr Preety Das, my co first-author for this study, is a psychotherapist/psychiatrist in training, who hopes this research could be used as a stepping stone, to collaboratively explore how advance decision-making might address racial inequalities in service use, particularly for Black people who experiences disproportionate coercion within the mental health system.

On behalf of myself, Preety, and our team, we are enormously grateful to members of the Bipolar UK community for having taken part in this survey and having provided such a remarkable set of data, which has already started to make a significant impact on mental health practice and policy.

Many thanks and best wishes,

Dr Tania Gergel (18^th June 2021)

For updates on our work follow me on twitter at DrT_Gergel. You can also find updates about the project at 3. Advance Directives | Mental Health & Justice (mhj.org.uk) and, if you have any questions or responses, feel free to get in touch with me

 

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Last updated: 17 January 2023