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

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          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.

          Highlights

          • •

            Mental health advance decision-making is widely approved but difficult to implement.

          • •

            UK government has committed to legal reform supporting advance decision-making.

          • •

            To prepare, stakeholder concerns need to be understood and addressed.

          • •

            Stakeholders were invited to co-produce the PACT advance decision-making template.

          • •

            PACTs facilitate collaborative, personalised advance decision making.

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          Most cited references19

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          Effect of joint crisis plans on use of compulsory treatment in psychiatry: single blind randomised controlled trial.

          Morven Leese, Graham Thornicroft, Claire Henderson … (2004)
          To investigate whether a form of advance agreement for people with severe mental illness can reduce the use of inpatient services and compulsory admission or treatment. Single blind randomised controlled trial, with randomisation of individual patients. The investigator was blind to allocation. Eight community mental health teams in southern England. 160 people with an operational diagnosis of psychotic illness or non-psychotic bipolar disorder who had experienced a hospital admission within the previous two years. The joint crisis plan was formulated by the patient, care coordinator, psychiatrist, and project worker and contained contact information, details of mental and physical illnesses, treatments, indicators for relapse, and advance statements of preferences for care in the event of future relapse. Admission to hospital, bed days, and use of the Mental Health Act over 15 month follow up. Use of the Mental Health Act was significantly reduced for the intervention group, 13% (10/80) of whom experienced compulsory admission or treatment compared with 27% (21/80) of the control group (risk ratio 0.48, 95% confidence interval 0.24 to 0.95, P = 0.028). As a consequence, the mean number of days of detention (days spent as an inpatient while under a section of the Mental Health Act) for the whole intervention group was 14 compared with 31 for the control group (difference 16, 0 to 36, P = 0.04). For those admitted under a section of the Mental Health Act, the number of days of detention was similar in the two groups (means 114 and 117, difference 3, -61 to 67, P = 0.98). The intervention group had fewer admissions (risk ratio 0.69, 0.45 to 1.04, P = 0.07). There was no evidence for differences in bed days (total number of days spent as an inpatient) (means 32 and 36, difference 4, -18 to 26, P = 0.15 for the whole sample; means 107 and 83, difference -24, -72 to 24, P = 0.39 for those admitted). Use of joint crisis plans reduced compulsory admissions and treatment in patients with severe mental illness. The reduction in overall admission was less. This is the first structured clinical intervention that seems to reduce compulsory admission and treatment in mental health services.
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            Clinical outcomes of Joint Crisis Plans to reduce compulsory treatment for people with psychosis: a randomised controlled trial.

            Graham Thornicroft, Simone Farrelly, George Szmukler … (2013)
            The CRIMSON (CRisis plan IMpact: Subjective and Objective coercion and eNgagement) study is an individual level, randomised controlled trial that compared the effectiveness of Joint Crisis Plans (JCPs) with treatment as usual for people with severe mental illness. The JCP is a negotiated statement by a patient of treatment preferences for any future psychiatric emergency, when he or she might be unable to express clear views. We assessed whether the additional use of JCPs improved patient outcomes compared with treatment as usual. Patients were eligible if they had at least one psychiatric admission in the previous 2 years and were on the Enhanced Care Programme Approach register. The study was done with 64 generic and specialist community mental health teams in four English mental health care provider organisations (trusts). Hypotheses tested were that, compared with the control group, the intervention group would experience: fewer compulsory admissions (primary outcome); fewer psychiatric admissions; shorter psychiatric stays; lower perceived coercion; improved therapeutic relationships; and improved engagement. We stratified participants by centre. The research team but not participants nor clinical staff were masked to allocation. This study is registered with ClinicalTrials.gov, number ISRCTN11501328. 569 participants were randomly assigned (285 to the intervention group and 284 to the control group). No significant treatment effect was seen for the primary outcome (56 [20%] sectioned in the control group and 49 [18%] in the JCP group; odds ratio 0·90 [95% CI 0·58-1·39, p=0·63]) or any secondary outcomes, with the exception of an improved secondary outcome of therapeutic relationships (17·3 [7·6] vs 16·0 [7·1]; adjusted difference -1·28 [95% CI -2·56 to -0·01, p=0·049]). Qualitative data supported this finding. Our findings are inconsistent with two earlier JCP studies, and show that the JCP is not significantly more effective than treatment as usual. There is evidence to suggest the JCPs were not fully implemented in all study sites, and were combined with routine clinical review meetings which did not actively incorporate patients' preferences. The study therefore raises important questions about implementing new interventions in routine clinical practice. Medical Research Council UK and the National Institute for Health Research. Copyright © 2013 Elsevier Ltd. All rights reserved.
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              Interventions to Reduce Compulsory Psychiatric Admissions: A Systematic Review and Meta-analysis.

              Mark H de Jong, Astrid Kamperman, Margreet Oorschot … (2016)
              Compulsory admissions, defined as admissions against the will of the patient (according to local judicial procedures), have a strong effect on psychiatric patients. In several Western countries, the rate of such admissions is tending to rise. Its reduction is urgently needed.
              Article 0 comments Cited 50 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Lucy A. Stephenson
                Journal
                Journal ID (nlm-ta): Int J Law Psychiatry
                Journal ID (iso-abbrev): Int J Law Psychiatry
                Title: International Journal of Law and Psychiatry
                Publisher: Elsevier
                ISSN (Print): 0160-2527
                ISSN (Electronic): 1873-6386
                Publication date PMC-release: 1 July 2020
                Publication date (Print): Jul-Aug 2020
                Volume: 71
                Electronic Location Identifier: 101563
                Affiliations
                [a ]Institute of Psychiatry, Psychology and Neuroscience, King's College London, United Kingdom
                [b ]Institute of Psychiatry, Psychology and Neuroscience, King's College London, 39 Essex Chambers, United Kingdom
                [c ]South London and Maudsley NHS Foundation Trust, United Kingdom
                Author notes
                [* ]Corresponding author. Lucy.a.stephenson@ 123456kcl.ac.uk
                [1]

                Joint first authors.

                Article
                Publisher ID: S0160-2527(20)30022-4 Publisher ID: 101563
                DOI: 10.1016/j.ijlp.2020.101563
                PMC ID: 7435693
                PubMed ID: 32768120
                SO-VID: 23614b47-ae3c-438a-973e-a9a01c49b626
                Copyright © © 2020 The Author(s)
                License:

                This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

                History
                Date received : 11 March 2020
                Date revision received : 17 April 2020
                Categories
                Subject: Article

                ScienceOpen disciplines: Law
                Keywords: advance directive,severe mental illness,bipolar,mental capacity,mental health law
                Data availability:
                ScienceOpen disciplines: Law
                Keywords: advance directive, severe mental illness, bipolar, mental capacity, mental health law

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