Understanding impaired treatment decisionmaking capacity in the context of psychosis

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1 Understanding impaired treatment decisionmaking capacity in the context of psychosis Dr Paul Hutton Associate Professor of Therapeutic Interventions Edinburgh Napier University, 2017

2 Acknowledgements Jazz Croft, Rob Dudley, Oona Galani, Sean Harper, James Harris, Jane Hutton, Amanda Larkin, Graeme Laurie, Colin McKay, Gary Morrison, Tony Morrison, Phil Murphy, Foteini Oikonomitsiou, Frances Simpson, Sarah Sparks, Jill Stavert, Peter Taylor, David Turner, Diana Stovell, Andrew Watson, Alison Wearden, Amanda Woodrow

3 The importance of understanding and supporting capacity in people with severe mental illness Formal and informal coercion is commonplace in mental health services (Burns et al, 2011) Coercive treatment is often traumatising and may not be an effective way of promoting short-term autonomy and recovery (Burns et al., 2013). Shared decision-making is a welcome development in severe mental illness, but evidence suggests prescribers see impaired decision-making capacity as major barrier to using it (Hamann et al., 2009). Capacity is linked to autonomy, dignity, agency and empowerment; these are particularly important to people with severe mental illness (Grealish et al., 2011; Pitt et al., 2007)

4 AUTONOMY EMPOWERMENT CAPACITY UNDERSTANDING INFORMATION COMMUNICATING DECISION WEIGHING INFORMATION REMEMBERING INFORMATION

5 EDCAP (Edinburgh Decisional Capacity And Psychosis Project)

6 Broad aims of EDCAP in 2013 Develop and test a psychological model of impaired autonomy in psychosis, focussing on decisional capacity Develop and test a psychological treatment approach to enhancing decisional capacity.

7 Do service users with psychosis support this research?

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9 Perceived benefits of doing this research Changes in the current care and treatment system Introducing a person-centred approach to treatment decision-making Meaningful service user involvement in research Investigating what decision-making capacity is and how it is measured / assessed Exploring alternatives to medication Empowerment of service users Breaking down the barriers and stigma

10 Research priorities of service users and other stakeholders Inclusion of service users Alternatives to and effects of medication Assessment of capacity Understanding the influences on the treatment decision-making process and how service users are supported in this process Attitudes towards and engagement with patients with psychosis Bringing change to the current system Breaking down the barriers and stigma

11 So, what do we know after 3 ½ years?

12 How do service users with psychosis experience treatment decision-making?

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15 they were just making decisions. // There were no warmness there were just no emotion... it was stressful you know, very stressful sometimes I just felt like a // like an effigy, you know in the corner (participant 1)...what a difference, what a difference. He used to consult about me medication...ask me how I d found it, and he, he seemed as though he genuinely cared and was interested... (participant 10) Stovell, Wearden, Morrison, Hutton (2016)

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17 Does shared treatment decision-making improve empowerment in psychosis?

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20 Does shared treatment decision-making improve treatment decision-making capacity in psychosis?

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22 What factors are related to treatment decision-making capacity in psychosis?

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26 What factors are related to decision-making ability in psychosis?

27 Woodrow, Sparks, Bobrovskaia, Hutton (in prep). Decision-making ability in psychosis: Systematic review and metaanalysis

28 Woodrow, Sparks, Bobrovskaia, Hutton (in prep). Decision-making ability in psychosis: Systematic review and metaanalysis

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31 What interventions improve treatment decision-making capacity in psychosis?

32 Larkin, A., & Hutton, P (under review).

33 Mid-way summary. Service users want us to research and develop ways to understand and support decision-making capacity The loss of self-governance that accompanies treatment decision-making in psychosis is traumatic and disempowering. Shared decision-making may empower, but effects are small and has no clear effect on treatment decisional capacity Treatment decision-making capacity is related to symptoms, verbal cognitive functioning and education in psychosis but not depression or anxiety. Decision-making ability in psychosis is impaired, but not related to positive symptoms, executive functioning or education; moderate correlation with negative symptoms. People with psychosis make decisions based on less evidence, and this appears to be specifically associated with delusions. Despite 25 years of research, we lack evidence-based interventions to support decision-making in psychosis

34 A cognitive model of impaired treatment decisional capacity in psychosis

35 We propose there are three modifiable pathways to impaired capacity in psychosis (1) Direct effect of appraisal content: Social defeat leads to symptoms. Both sets of experiences are interpreted in a way that has a direct negative effect on capacity. The nature of the appraisals that emerge are influenced by cognitive biases, perseverative processing, and cognitive functioning (2) Indirect effect of appraisal-induced emotion: Appraisals lead to very high emotional arousal, which has a negative effect on decision-making. Degree of arousal driven by metacognitive beliefs. (3) Direct effect of depleted cognitive resources: Reduced cognitive resources have a direct negative effect on capacity. Resources are depleted by perseverative processing and impaired cognition, but impact is moderated by metacognitive awareness

36 and two negative feedback loops (1) Impaired capacity leads to compulsory treatment, trauma and social defeat, in turn leading to increased symptoms. (2) Emotional arousal not only impairs capacity, but also exacerbates symptoms. In both cases, exacerbation of symptoms may be appraised in a way that has direct and indirect effects on capacity.

37 METACOGNITIVE AWARENESS & BELIEFS DISRUPTED SALIENCE PERCEPTUAL & COGNITIVE INTRUSIONS SOCIAL DEFEAT & TRAUMA REASONING STYLE ATTRIBUTIONAL STYLE COGNITIVE PROCESSING STYLE COGNITIVE FUNCTION PERSONAL MEANING OF EXPERIENCES DISRUPTED AUTONOMY EMOTIONAL AROUSAL BEHAVIOURAL RESPONSE IMPAIRED TREATMENT DECISIONAL CAPACITY UNDERSTANDING, RETAINING, USING, WEIGHING & COMMUNICATING INFORMATION

38 Make decisions based on gut instinct; believe worry keeps safe; unaware of memory problems; unaware thoughts can be intrusive; fears of mental catastrophe Things seem significant Loud intrusive thoughts Lost job; forced treatment Form conclusions quickly Thoughts are not mine Worry all night Memory problems I m losing control of my mind Vs Staff are replacing my thoughts Kept in hospital Anger, anxiety, fear Won t speak to staff Impaired treatment decision-making capacity Can t use info; treatment part of conspiracy ; Difficulty remembering counter-evidence; Won t discuss with staff

39 Testing the model: completed work (1) There is a significant relationship between data-gathering and capacity, and this is partially mediated by the formation of psychotic symptoms (Larkin, Turner & Hutton, in prep) (2) Improving the data-gathering bias via metacognitive intervention causes improvements in capacity (Turner, MacBeth, Livingstone & Hutton, in prep) (3) Treatment decision-making capacity is not associated with better subjective recovery if anything it was associated with lower self-rated recovery (Larkin, Turner & Hutton, in prep). (4) Experimental induction of (a) worry and anxiety and (b) fear and paranoia does appear to cause the predicted decrease in data-gathering in healthy people (Galani & Hutton, in prep; Harris & Hutton, in prep) (5) No evidence that social defeat contributes to reduced data-gathering in healthy people (Croft & Hutton, in prep)

40 Testing the model: ongoing and planned work (1) Case series of psychological assessment and formulation of impaired treatment capacity in psychosis now underway (Murphy & Hutton, ongoing) (2) A randomised controlled trial of metacognitive training for treatment decisional capacity in psychosis (Hutton, Harper, Stavert, Watson) (3) An investigation of the relationship between perseverative processing, metacognition and capacity in psychosis (4) An investigation of the effect of improving emotion regulation on decision-making ability in psychosis. (5) An investigation of the effect of reducing social defeat on decisionmaking ability and capacity in psychosis (6) An investigation of the effect of reducing post-traumatic stress disorder symptoms on decision-making capacity

41 Summary Emerging evidence suggests emotion has a major effect on datagathering in healthy individuals, but its role in relationship to decision-making in psychosis has received little attention. Reduced data-gathering is prevalent in psychosis and early observational and experimental evidence suggests this may contribute to impaired decisional capacity. Social defeat is thought to cause symptoms and negative appraisals, but no evidence as yet it has an effect on decision-making. Early evidence suggests metacognitive awareness and beliefs are likely to be key moderators of perseverative thinking and also cognitive impairment. Lots of work to do to test and modify proposed model, and start to develop treatment components. In the meantime.

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43 Conclusion We must invest significant resources in (i) understanding barriers to autonomy and selfgovernance in mental health and (ii) developing evidence based strategies to help remove these barriers. Thank you