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

TY - JOUR

T1 - The PACT advance decision-making template

T2 - preparing for Mental Health Act reforms with co-production, focus groups and consultation

AU - Stephenson, Lucy

AU - Gergel, Tania

AU - Ruck Keene, Alexander

AU - Larry, Rifkin

AU - Owen, Gareth

N1 - Funding This work was funded by the Wellcome Trust – grant number 203376/Z/16/Z Acknowledgements Dr Isabelle Ekdawi Dr Lorraine Gordon Prof George Szmukler Tom Prater

PY - 2020/7/1

Y1 - 2020/7/1

N2 - 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. AimsTo build understanding and address the gap between aspirations for ADM and actuality, with feasible co-produced ADM resources. MethodsWe 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. ResultsBetween 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. ConclusionOur 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.

AB - 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. AimsTo build understanding and address the gap between aspirations for ADM and actuality, with feasible co-produced ADM resources. MethodsWe 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. ResultsBetween 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. ConclusionOur 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.

KW - Advance directive

KW - Bipolar

KW - Mental capacity

KW - Mental health law

KW - Severe mental illness

UR - http://www.scopus.com/inward/record.url?scp=85088140694&partnerID=8YFLogxK

U2 - 10.1016/j.ijlp.2020.101563

DO - 10.1016/j.ijlp.2020.101563

M3 - Article

SN - 0160-2527

VL - 71

JO - International Journal of Law and Psychiatry

JF - International Journal of Law and Psychiatry

M1 - 101563

ER -