‘Self-binding directives’ – should it be possible to request involuntary treatment in advance?
By iomh, on 5 July 2023
Earlier this year in a BBC Radio 4 programme Tania Gergel documented her treatment for bipolar. In this blog, she describes how she has used ‘self-binding directives’ to manage the risks associated with these treatments.
Shortly after I moved into the field of mental health ethics and law about twelve years ago, I found my work focusing on one particular area – mental health advance directives or ‘advance choice documents’, as they will soon be known within the upcoming revisions to the Mental Health Act in England and Wales.
Research and practice in this area had been dominated by the idea that advance choice documents could provide a way for people with severe mental illness to avoid hospitalisation and involuntary treatment. But it soon became evident that, in fact, many people might also want to harness the power of advance decision-making to do the opposite – to ensure that they received treatment, even if against their will, during future episodes of illness when they knew from past experience, they would resist.
For me, this did not come as a great surprise. As I discuss in the BBC Radio 4 documentary I made with my colleague Sally Marlow last year, I myself already had written and used this type of document to manage the risks associated with my own health condition, bipolar.
Ironically, as someone who had begun my academic life at UCL and King’s as a classicist and ancient philosopher, this wasn’t the only overlap – ‘self-binding directives’ are also known as ‘Ulysses contracts’, echoing the myth of Ulysses/Odysseus and the Sirens – suddenly my academic life in psychiatry had become irretrievably enmeshed with both my lived experience of illness and my alter ego as a philosopher!
Since the 80s there had been lots of ethico-legal debate about ‘self-binding directives’, with the general consensus being that they had the potential to be an enormously valuable intervention, but were too mired in legal and ethical complexities to be practicable. Together with my team at King’s we created a framework which could tolerate the essential legal, ethical, and clinical difficulties. At the same time, central to my work, was the importance of hearing the viewpoints of those with lived experience.
Challenging the barriers
In partnership with Bipolar UK, we conducted a survey about advance choice documents, which included specific question about whether people would endorse or reject the idea of ‘self-binding’ and why. The results of this study, published in Lancet Psychiatry in 2021, revealed both very high support for the idea and some reasons to challenge the main barriers to ‘self-binding’ presented within the ethico-legal research.
In February 2023, as the main part of this work concluded and I finished in my role as a Commissioner for the Bipolar UK 2021 Commission (The Findings of the Bipolar Commission (bipolaruk.org)), I moved to Bipolar UK to become their first Director of Research, and also joined the UCL Division of Psychiatry / Institute of Mental Health. I see my new role at Bipolar UK very much as partnership with UCL and am already talking to people here about taking forward some new research on suicide and delayed diagnosis in bipolar, key concerns raised by the 2021 Bipolar Commission.
I have three UCL MSc students working on Bipolar UK-related research dissertations and am hoping that this partnership will offer lots more opportunities for UCL staff and students work together with the organisation. Sally Marlow and I are also running a broader project making videos to help educate people about how to make advance choice documents, with a big team including the Department of Health and Social Care representatives responsible for implementing the new Mental Health Act legislation and colleagues at UCL. These will be launched in September 2023.
I’d be very happy to discuss any of this work and hope that you’ll be able to join me for a Division of Psychiatry seminar on Wednesday 19 July at 3pm to hear more about the ‘self-binding directives’ project.
Tania Gergel is the director of research at Bipolar UK and an Honorary Senior Research Fellow at UCL Division of Psychiatry.