‘If I’m ill, I want you to do this...even if I tell you not’: A multi-perspective qualitative study exploring experiences of making ‘self-binding’ advance decisions with service users, carers, and clinicians

Abstract

Background There is increasing international interest in mental health advance decision-making (ADM) for people with episodic severe mental illness who are at high risk of experiencing mental capacity loss and distressing involuntary treatment when unwell. ‘Self-binding’ (SB), sometimes known as a Ulysses contract, involves making advance requests for involuntary treatment. It is the most ethically controversial form of ADM but one that policy makers and researchers must engage with as evidence suggests it is supported by service users. This study aims to inform debate and policy through exploring the experience of service users, carers and health professionals involved in making ADM documents which include provision for ‘self-binding’. Methods We recruited service users diagnosed with bipolar disorder, with experience of compulsory treatment and fluctuating mental capacity during severe episodes of illness. We conducted interviews with these service users plus supporting family members/friends and clinicians before and after drafting self-binding ADM (SB-ADM) documents. Interviews were thematically analysed by an interdisciplinary team. Results 75 interviews were analysed. The sample comprised 15 service users, 14 family members/friends and 18 clinicians. Key themes were: self-binding, feeling oppressed, being mis/unheard, addressing trauma, losing mental capacity, risking hope, building alliance. Two outlying categories were identified: radical refusals and radical requests. Conclusions This is, to our knowledge, the first study of stakeholder experience of drafting SB-ADM. The findings illuminate the complex psychological context within which SB-ADM occurs and challenge assumptions found in conceptual literature that the driving motivation for self-binding is achieving personal autonomy. Instead, this study suggests stakeholders are more invested in relational autonomy - using collaborative SB-ADM to build alliance and preserve interpersonal systems challenged by episodes of illness. Crucially, the data highlighted the potential harms if service user advance decisions are not accessed or applied by clinicians. Future research should focus on developing health professional training which includes awareness of the enabling psychological factors for SB-ADM and longitudinal lived experience studies which explore SB-ADM outcomes.