Do service users with bipolar disorder want to choose enforced treatment ahead of future episodes

King’s College London

A new study from the Institute for Psychiatry, Psychology & Neuroscience (IoPPN), King’s College London, in partnership with the charity Bipolar UK, explores how people living with bipolar disorder feel about the idea of a ‘self-binding directive’

Beth Hopkins - Identity Drawing for Lancet Psychiatry

A new study from researchers at the Institute for Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London, in partnership with the charity Bipolar UK, has explored how people living with bipolar disorder feel about the idea of a ‘self-binding directive’. This would give people the opportunity to choose in advance the care they would receive on becoming unwell including giving instructions to clinicians to overrule treatment refusals during future episodes of severe illness.

Self-binding directives 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, 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.

Dr Tania Gergel, joint first author from King’s IoPPN, said “From this data we have clear evidence to support the view that mental health care should incorporate the use of directives into advance decision-making practice. However, despite the clear endorsement by the majority of respondents to this survey, the presence of ambivalence and outright rejection of self-binding directives from others emphasises the need to take individual values and opinions into account.”

Between Oct 23 and Dec 5, 2017, 932 individuals with a self-reported clinical diagnosis of bipolar disorder completed an internet survey, responding to the statement “Some people think a “self-binding statement” is a good idea”. A further 565 provided further reasoning in the open text response follow up (“Why do you think this?”).

Endorsement

The majority of respondents said that they felt the directives were a good idea, with 463 people (82%) supporting their use. One of the key reasons for endorsement which emerged was a theme of “distorted thinking when unwell”, with almost all respondents who endorsed 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.

A person going through a manic episode has, by definition, seriously distorted thinking. If a person is manic to the extent that they cannot make their own decisions then again, by definition, they are not in a right mind to refute their advance care plan – otherwise it’s basically worthless.– Survey respondent (Y)

Other respondents felt that the use of directives gave them a level of empowerment as they were still able to have a say over their care, while others recognised the potential practical benefits, such as minimising suicide risk through ensuring that they would receive treatment in future.

Rejection

65 respondents (11.5%) rejected the use of directives. One of the key reasons for rejection was a theme of ‘validity of thinking when unwell’. In direct contrast with so many of those who endorsed, many rejections were based on a view that being unwell didn’t invalidate their opinions and mean that their views about their care should be overlooked.

I think how a person is feeling in a crisis is valid. As it’s valid at the time, the advanced statement might be temporarily invalid.– Survey respondent (N)

Other respondents noted that a ‘self-binding directive’ could not allow for the possibility that valid thinking may be present in some periods of illness but not during others..

Ambivalence

37 respondents (6.5%) said that they were ambivalent with many citing logistical concerns about the drafting and implementation of their use, in particular that the document could be out of date and not represent the individual’s most recent opinions.

Co-first author Dr Preety Das from King’s IoPPN and the South London and Maudsley NHS Foundation Trust said ‘Our study has provided a rich source of empirical data for the first time in the field of advanced decision-making (ADM). As a clinician, this represents a culture shift towards a more collaborative approach that encourages treatment requests, as well as appropriate treatment refusal, and respects service user expertise borne of lived experience.

‘Crucial next steps will be to explore how ADM might be used to address the disproportionate use of coercion that research has shown is experienced by people from Black and minority ethnic backgrounds in mental health services (Barnett et al., 2019); through working collaboratively with local community organisations and those who have lived experience.’

Alongside the article is a piece – Self-binding directives through making – The Lancet Psychiatry, featuring reflections and images of artwork inspired by the study, by the artist Beth Hopkins. Beth, an artist with lived experience of bipolar, has been part of a collaboration between the Bethlem Gallery and 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.

This study was possible thanks to funding from the Wellcome Trust.

Reasons for endorsing or rejecting ‘self-binding directives’ in bipolar disorder: a qualitative study of survey responses from UK service users. (DOI 10.1016/S2215-0366(21)00115-2) (Tania Gergel, Preety Das (joint first-authors), Gareth Owen, Lucy Stephenson, Larry Rifkin, Guy Hindley, John Dawson, Alex Ruck Keene.) was published in The Lancet.

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