The PACT advance decision-making template: preparing for Mental Health Act reforms with co-production, focus groups and consultation

Abstract

Background Advance decision making (ADM) in mental health is supported by stakeholders but faces significant barriers. These must be overcome, not least to support the UK government's commitment to introduce statutory mental health ADM in England and Wales. Aims To build understanding and address the gap between aspirations for ADM and actuality, with feasible co-produced ADM resources. Methods We used focus groups and consultation to explore experience and views of stakeholders on ADM processes and materials. Discussions included feedback on an ADM template which was adapted accordingly throughout the research process. Results Between September 2017 and December 2019, 94 individuals, representing stakeholders advised on design and process of ADM, alongside wider discussion at stakeholder events. Collaborative ADM was universally supported. Valued outcomes were diverse and combining aspirations with practicality required resolving dilemmas. A prototype template and guidance, the PACT (Preferences and Advance decisions for Crisis and Treatment) was co-produced, designed to help manage fluctuating mental capacity through collaborative decision making. The PACT enables direct engagement with medico-legal frameworks, with provision to facilitate person-centred assessments, treatment refusals and requests. Resources including supported engagement and cross-agency awareness and accessibility were seen as essential. Conclusion Our research confirms high stakeholder motivation to engage in ADM is hampered by multiple barriers. We identified enabling conditions for ADM and co-produced an ADM template and guidance which supports achievement of a range of valued outcomes. Further developments to support and evaluate the process of implementation are now needed to prepare for statutory change.

Shared Decision-Making: An Autoethnography About Service User Perspectives in Making Choices About Mental Health Care and Treatment

“…This second example reflects a process of SDM, because at its core is a shared agreement and shared enterprise between the service user and the professional to share risk ( 6 ). This requires the practitioner to give up some of their power and enter a more equal relationship with the service user and be open to the service user perspective ( 18 ).…”

“…However, a service user's perceived lack of insight into their mental health condition ( 10 ) and safe-guarding concerns about their situation may be a barrier to professionals' willingness to implement SDM ( 18 ) because risk management is at the center of mental health practice ( 17 ). Moreover, challenges to implementing SDM have been identified when clients are in severe mental distress or lack insight ( 10 ), as experienced in my first situation of acute distress.…”

“…Moreover, challenges to implementing SDM have been identified when clients are in severe mental distress or lack insight ( 10 ), as experienced in my first situation of acute distress. Moreover, professionals sometimes believe that lack of capacity negates the process of SDM as a service user is perceived as unable to participate effectively in decision-making processes ( 18 ). However, despite this, many service users with psychiatric conditions retain capacity to make all or most decisions about their own care, even though their capacity can fluctuate.…”

“…In such circumstances, professionals may not prioritize and value the reasons why service users choose not to comply with medications which may cause them negative and intolerable adverse effects. In such circumstances, professionals may feel that they are accountable for safety decisions; thus, this highlights that professional responsibilities about the medical and legal limitations of professional accountability need to be clarified ( 18 ) and emphasizes the need for value to be placed on listening to and respecting the opinions of the service user, as identified above.…”

“…These two poles of care provision exist at different ends of a continuum, given that professionals aim at balancing the need for care and control. Thus, SDM is a framework which is controversial for many professionals ( 18 ) making its implementation challenging for both professionals and service users ( 19 ). Additionally, its emphasis on the importance of acknowledging the value of experiential knowledge in the therapeutic alliance between the service user and the practitioner can also be demanding because it generates a new relationship between these two parties ( 6 ).…”