Advance Decision Making in Bipolar

Student thesis: Doctoral ThesisDoctor of Philosophy

Abstract

Background
Advance Decision Making (ADM) has particular salience for people who predictably experience fluctuations in their capacity to make treatment decisions. The paradigm example of this is seen in Bipolar Affective Disorder (bipolar). ADM has been promoted as a tool to increase service user autonomy and reduce coercion. However, ethical concerns persist and ADM has proved challenging to implement. The self-binding (SB) model of ADM is particularly powerful but also controversial. In the academic literature critics argue the risk of unjustified coercion is too high and implementation challenges insurmountable. Yet, there has been limited exploration of service user views of these risks. Tackling such issues has become an acute policy concern in England and Wales following government commitment to introduce statutory mental health ADM in the form of ‘Advance Choice Documents’ (ACDs).

Aims
In response to these concerns, this thesis will address three overarching research questions:
1. Can a model of ADM which includes support for SB (SB-ADM) be developed
with and for service users with bipolar?
2. Can this model of SB-ADM be feasibly implemented within mental health services?
3. What is the experience of stakeholders involved in making these
documents?

Methods
Two phases of research were needed:
Phase 1: Co-producing an ADM template tailored for fluctuating capacity which supports SB
This phase involved systematic reviews of the literature and focus groups with key stakeholders.

Phase 2: Implementing an ADM template
The ADM template was implemented in frontline clinical services with service users who had a diagnosis of bipolar and experience of compulsory treatment. Qualitative interviews were conducted with service users, carers and health professionals before and after the documents were completed. The transcripts from these interviews were thematically analysed within an interdisciplinary team environment. Implementation strategies were refined in successive Plan Do Study Act cycles and summarised using the Expert Recommendations for Implementing Change framework.

Results
Literature reviews revealed ethical controversy and limited empirical research which might enable key ethical and implementation issues to be confidently addressed. A prototype ADM template which included support for SB was co-produced during stakeholder focus groups. This was refined for implementation with service users and clinical leaders to meet the needs of the local NHS Trust and anticipate ‘Advance Choice Documents’. The template was piloted with 17 service users, 14 of whom were eligible to interviewed alongside 14 involved family members/friends and 18 clinicians about their feedback on the process of the using the prototype ACD (called a Crisis PACk). Fifteen service users alongside 14 family members/friends and 18 clinicians were eligible to be interviewed about their experiences of SBADM. Key themes from these interviews were: feeling oppressed, being mis/unheard, addressing trauma, losing mental capacity, risking hope, building alliance. Two outlying categories were identified: radical refusals and radical requests. Implementation strategies included: co-produced materials, training and coaching sessions for professionals and sessions to support
service users drafting their documents. Participants identified significant harms that may occur if ADM documents are not appropriately implemented.

Conclusions
A model of ADM which supports SB and anticipates the shape of MHA reform was coproduced with service users and other key stakeholders. This model was piloted within frontline clinical services and key implementation strategies were developed and refined. Stakeholders articulated their fears that ADM documents would be unaccessed or ignored yet stated a willingness to risk hoping that their expertise could be used to avoid future traumatic experiences and build alliance. This thesis addresses current ethical concerns and reveals previously poorly acknowledged areas of tension. It provides vital learning for future pilot projects focused on preparing for national roll out of ACDs and underlines the need for appropriate resources to support these efforts.

Date of Award1 Apr 2023
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorGareth Owen (Supervisor) & Tania Gergel (Supervisor)

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