Paternalism has a long history in medicine and neglecting to consider the autonomy of patients is something that the ethical clinician should resist. This challenge, however, is heightened in clinical practice with those with a psychotic illness. Often, the people who we see, deny that they have any mental health problems and that they need any therapeutic interventions.
We allow patients to have autonomy and make informed choices about treatment until some ill-defined ‘tipping point’ occurs where, as clinicians, we shift from a collaborative approach to one that may include the use of the Mental Health Act, and coercive, paternalistic practice. Even when the use of the Act is not being considered, the fear and anxiety around being ‘sectioned’ frequently hovers in the background, deforming therapeutic relationships and under-cutting the idea of a virtuous co-production of treatment planning.
However, against this view, there have been many accounts over the years where patients have been grateful for having been detained, which prevented a greater harm befalling them, and conversely, others who have been upset that inpatient or accident and emergency staff allowed them to discharge themselves from hospital and subsequently do something they have regretted.
In Oxford, the Faculty of Philosophy and the Department of Psychiatry have been working with the Mental Health Foundation on a project entitled Therapeutic Conflicts: Co-Producing Meaning in Mental Health. This project has sought to examine how, collaboratively, meaning can be co-produced in a therapeutic consultation, and where there is an asymmetry in knowledge and/or power in such a relationship, the conditions for a virtuous, rather than a vicious, asymmetric relationship can be created and sustained.
The approach taken in this work has been influenced by Miranda Fricker’s important book, Epistemic Injustice (Fricker 2007), which argues that certain people are judged to be less competent knowers based upon characteristics that are not linked to their ability to function as a knower. Fricker’s initial concern was with the status of epistemic injustice towards women, but her approach has been applied to medicine more generally (Carel & Kidd 2014), and along with our work, to psychiatry (Sanati & Kyratsous 2015).
This growing interest in communication in clinical encounters has been recognised on the The Mental Elf before, notably in two recent blogs by John Baker about related papers on communication with those with psychosis, and financial incentives for treatment concordance.
In this blog, the important paper by Stovell and colleagues (Stovell et al. 2016) is discussed. Their study seeks to look systematically at shared decision-making, a middle-ground between paternalism and autonomy, in those with psychotic illness and how, where such a style is employed, this can impact on empowerment, therapeutic relationships, decision-making abilities, and knowledge.
The authors argue that this is an important area as the Schizophrenia Commission has recommended shared decision-making is employed in relation to treatment and, that currently, around 60% of patients state that they are not consulted about treatment.
Methods
The study reports a systematic review and meta-analysis of randomised controlled trials (RCTs) of shared-decision making concerning treatment for psychosis. The authors defined a clear search strategy, detailed in the supplementary material to the article, using a variety of terms from different domains (patient-oriented terms, process terms, technique terms, relationship terms, advance planning terms, psychosis terms and trial terms). Electronic databases were searched as well as the references from previous reviews on shared decision-making. The authors did not limit the search by year of publication, but did only include English language publications. Screening and data extraction was carried out by two of the authors, with a third author providing arbitration regarding inclusion in the case of uncertainty.
Intervention trials were the studies included and they were defined as those that compared a psychosocial intervention to enhance shared decision-making in treatment for psychosis with usual or non-specific treatment. The intervention could be at the individual or group level, but had to include direct contact with patients or clinicians. At least 50% of the participants in the study had to have a diagnosis of a schizophrenia spectrum disorder for the study to be included.
The authors selected two primary outcomes:
- Subjective empowerment
- Reduced objective coercion.
The former outcome was measured in a variety of ways in the studies included and the authors used a hierarchy to determine which data type would be extracted from a given paper. Objective coercion was measured by number of admissions utilising mental health legislation.
Secondary outcomes were:
- Quality of patient-provider relationship
- Decision-making abilities and knowledge.
The review protocol was registered in advance with the Prospective Register of Systematic Reviews (PROSPERO).
Summary data was extracted using a spreadsheet and the authors of studies were contacted where data was missing. Continuous data was extracted and combined and statistical significance inferred with P values of <0.05. Risk of bias for each study was assessed using the Cochrane Collaboration risk of bias tool, and study quality was assessed.
Results
The authors screened 4,676 titles and abstracts for inclusion, and examined 38 full papers, with 11 RCTs included in the final review. There were issues with quality and bias in many of the studies included; the interventions precluded blinding, and in over half of the studies there was a risk of attrition bias or it was unclear. There was also a concern about bias in reporting outcomes from the RCTs, recruitment bias, and cross-contamination.
However, despite these concerns the authors found:
- A small effect of shared decision-making on subjective empowerment, but based on what was judged to be low quality data
- Three studies suggested a trend towards shared decision-making reducing the likelihood of compulsory inpatient treatment, but the authors did not clearly exclude the possibility of no effect
- Findings for the secondary outcomes were inconclusive with no impact of shared decision-making interventions on patient or observer-rated relationship with clinician, or on enhancing participant decision-making ability as rated by clinicians.
Conclusions
The authors conclude that shared decision-making, considering patients’ values and preferences, may lead to a greater sense of empowerment and less coercion in their care.
The authors’ summarise their study, thus:
It may be argued that empowerment has value only in so far as it facilitates other established outcomes, such as symptom reduction, lower cost or improved social outcomes. However, there is considerable evidence that people using mental health services regard greater treatment-related empowerment not just as a means to some further end, but also as having value in its own right (p. 27).
Strengths and limitations
The study is well-conducted and the authors are very clear about their methodology and use a standardised means of conducting a systematic review and meta-analysis, and in presenting their findings.
The authors note some important limitations of their work:
- The lack of direct measures of empowerment in the studies surveyed
- They refute a potential criticism that they may have utilised an over-broad definition of shared decision-making, pooling studies from a variety of settings, with different aims
- They also wisely note that not all patients may wish to be involved in shared decision-making and may prefer a more paternalistic style in clinical interactions.
An outcome measure that is not discussed but would be one to consider is the positive impact on shared decision-making for clinicians. Using these methods may enable clinicians to work in a manner in which feels more ethically appropriate, which in turn could have an impact in burnout, wellbeing, and recruitment and retention in mental health clinicians.
Summary
- The clinical encounter is a crucial point for a person with psychosis: they may not view themselves as having a health condition, be frightened about the nature of psychiatric services, and have wider paranoid concerns (Becker et al. 2016; Jansen et al. 2015)
- Yet, good engagement with clinical services and positive therapeutic relationships are important predictors of clinical outcome (Farrelly & Lester 2014; Marwaha et al. 2016)
- However, services have to operate in a complex interpersonal space with those who seek the advice of psychiatrists. Relationships are dynamic with collaboration and coercion frequently being intertwined in a patient’s experience of care (Laugharne et al. 2011)
- Patients report that they feel relationships are enhanced by clinicians making personal disclosures, but diminished by coercion and clinicians who rely wholly on scientific knowledge (Laugharne et al. 2011).
Studies of decision-making and consultation styles in mental health are important for outcomes and for service delivery, but are hard to do and the researchers who carry out such work should be lauded by those of us who benefit. This evidence is timely as services continue to constrict, and with the Royal College of Psychiatrists emphasising an enhanced role for neuroscience in the curriculum for the training of psychiatrists, and how such an emphasis impacts on clinical consultations, it is a ripe area for further research.
Conflict of interest
MB is an associate and handling editor of The British Journal of Psychiatry, where the primary paper under discussion in this blog was published, and is co-applicant on a grant with one of the co-authors, Professor Anthony Morrison, for the NIHR HTA study, 15/31/04 – A randomised controlled trial of antipsychotic medication in comparison to psychological intervention and a combined treatment in children and young people with first episode psychosis: a feasibility study.
Links
Primary paper
Stovell D, Morrison AP, Panayiotou M, Hutton P. Shared treatment decision-making and empowerment-related outcomes in psychosis: systematic review and meta-analysis. The British Journal of Psychiatry. 2016;209(1):23–8.
Other references
Becker, K.D. et al., 2016. The Common Elements of treatment engagement for clinically high‐risk youth and youth with first‐episode psychosis. Early Intervention in Psychiatry, 10(6), pp.455–467.
Carel, H. & Kidd, I.J., 2014. Epistemic injustice in healthcare: a philosophical analysis. Medicine, Health Care and Philosophy, 17(4), pp.529–540.
Farrelly, S. & Lester, H., 2014. Therapeutic relationships between mental health service users with psychotic disorders and their clinicians: a critical interpretive synthesis. Health & Social Care in the Community, 22(5), pp.449–460.
Fricker, M., 2007. Epistemic Injustice, Oxford: Oxford University Press.
Jansen, J.E. et al., 2015. Important first encounter: Service user experience of pathways to care and early detection in first‐episode psychosis. Early Intervention in Psychiatry, pp.n/a–n/a.
Laugharne, R. et al., 2011. Trust, choice and power in mental health care: Experiences of patients with psychosis. International Journal of Social Psychiatry, 58(5), pp.496–504.
Marwaha, S. et al., 2016. Fifteen years on – early intervention for a new generation. The British Journal of Psychiatry, 209(3), pp.186–188.
Sanati, A. & Kyratsous, M., 2015. Epistemic injustice in assessment of delusions. Journal of Evaluation in Clinical Practice, 21(3), pp.479–485.
Therapeutic Conflicts: Co-Producing Meaning in Mental Health. Oxford Faculty of Philosophy website, last accessed 9 Jan 2017.
The Gatsby Foundation and Wellcome Trust Neuroscience Project. Royal College of Psychiatrists website, last accessed 9 Jan 2017.
Any UK research summary relating to Seikkula’s Open Dialogue, that has similarities to shared treatment decision making?
Hi David,
It’s generated a lot of interest in the last year or two, but as far as I’m aware there is virtually no reliable research worldwide on Open Dialogue. A quick PubMed search on ‘open dialogue psychosis’ brings back almost nothing: https://www.ncbi.nlm.nih.gov/pubmed/?term=open+dialogue+psychosis
I think the ODDESSI randomised controlled trial led by Steve Pilling is awaiting a decision on funding from NIHR at the moment. You can read more about that in Russell Razzaque’s presentation here:
http://apopendialogue.org/wp-content/uploads/2016/05/Combined-presentations-PODCON-2016.pdf
It’s certainly something we’re keeping our elfin eyes on :-)
Hope that helps!
Cheers, André
Thanks to you and to Matthew for this helpful summary and critique. I think Matthew raises some very interesting points. My own view is that the data on SDM is positive but that much work needs to be done, and that while SDM might be helpful, we really cannot afford to be complacent.
Supported rather than shared decision-making is probably the direction of travel (particularly given the UNCRPD developments), but to support decision-making we need a much better empirical and theoretical understanding of the factors that help or hinder it, as well as a framework (eg value based practice) for dealing with the tricky yet inescapable normative issues that arise. We are are trying to take forward this work up in Edinburgh – we hope to publish some papers on this soon.
Thank you Paul,
I very much enjoyed the paper – learned a lot!
I agree that this is an important issue and there is much more work to be done.
Several years ago I looked at the literature on consultations in mental health services and was surprised how little there was, given the great importance of those meetings, and how much is there in cancer, GP, dementia etc.
The Oxford project sounds interesting, but it appears to be based on assumptions of ‘mental disorder’ which are in themselves a prime example of ‘epistemic injustice’ – some would use Foucault’s phrase ‘epistemic violence’ – in that they impose a contested medical discourse which undermines the perspectives of the whole group of people who are so labelled. Will the project be reflecting on the epistemic assumptions of its own vocabulary?
Many thanks for reading the post and the interest in the project in Oxford. As mentioned, the work is a collaboration with the Mental Health Foundation, and specifically Dr David Crepaz-Keay who has highlighted some of the contested views around mental disorder and the attribution of experiences which may be discussed in consultations. Fricker’s concept of epistemic injustice can be helpful as can serve as a corrective to the view you suggest – namely, an attribution of a non-epistemic attribute, whether attributed rightly or wrongly (in this case, illness) which then is used to undermine the person being viewed as able to give correct information. So, I think yes, one of they key goals of the project is to examine the conditions for co-production of meaning in clinical consultations, and to aim to make both parties symmetrical in their status as epistemic agents, where possible.
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