Shared decision making: everyone wants it, so why isn't it happening?
Authors: Angela Coulter
Journal: World Psychiatry (2017)

M. Slade1 makes a strong case, in this issue of the journal, for a wider adoption of shared decision making (SDM), while acknowledging the particular problems that must be overcome if it is to become the dominant mode in mental health care. I believe the arguments for this approach are even more compelling than he demonstrates, but implementation remains a key challenge. It is true, as Slade argues, that evidence of the impact of SDM on clinical outcomes in psychiatry is mixed, but the wider body of SDM research leads to a more positive assessment. Most of the studies he cites were primarily concerned to evaluate the use of specific tools to inform one-off treatment decisions, such as patient decision aids. These are information packages designed to inform patients about their treatment options and help them determine which they would prefer. They take a variety of forms, spanning from one-page sheets, more detailed leaflets or computer programmes, through to DVDs and interactive websites. Some are designed for use by patients at home, while others are intended to guide discussions in medical consultations. They are not absolutely essential for SDM but, by packaging evidence-based information in an accessible form, they certainly make it easier. A recently-updated Cochrane review across all conditions, not just mental health, combined results from 115 randomized controlled trials of patient decision aids, most of which focused on discrete choices and decisions made at a single point in time2. The review found that use of decision aids led to improvements in patients' knowledge, more participation, more accurate risk perceptions, fewer people remaining undecided, and greater comfort with decisions. However, none of these trials had looked at whether consultations exhibited the full range of SDM characteristics (defining the problem, outlining the options, checking understanding, eliciting values, supporting deliberation, reaching mutual agreement) and few had looked at longer term clinical outcomes. In other words, these studies looked at only one component of this highly complex intervention. These decision aid trials tell us something about the potential benefits of SDM, but this is only part of the story. SDM involves a conversation, or more likely a series of conversations, between patients and clinicians: it is a relationship and a process, not a tool or a one-off event. This is especially pertinent in the case of long-term conditions, such as most mental health problems. Relevant outcomes may include physical and emotional effects, subjective health status, knowledge and understanding, self-management capabilities, treatment burden and resource use, as well as experience of the decision-making process. We looked at these outcomes in another Cochrane review focused on people with long-term conditions3. We searched for randomized controlled trials that had evaluated personalized care planning (SDM by another name), which we defined as anticipatory, negotiated discussions to clarify patients' goals and priorities, agree realistic objectives, solve specific problems, identify relevant sources of support, document agreed action plans, and implement these, including follow-up and review. Nineteen trials met our inclusion criteria. These showed evidence of small, but beneficial effects on emotional health (depression), physical health (blood glucose, blood pressure), and self-efficacy (self-management knowledge and skills). The effects were greater when all stages of the care planning cycle were completed, when the process included more contacts over a longer time period, when it was fully integrated with routine care, and when both clinicians and patients were well supported. We rated this evidence as promising, albeit not yet conclusive, but we hope we have pointed the way towards a more sophisticated evaluation of SDM and its effects than simply looking at the impact of patient decision aids on one-off treatment decisions. We need to give serious consideration to the issue of how conclusive evidence has to be before we attempt to implement it. If patients want it, the ethical case is strong, there is evidence of some beneficial effects and no likelihood of harm, is that sufficient? Most of those arguing for SDM base their case on ethical justifications rather than clinical ones – patients do want it, it is important to respect their autonomy (right to be informed and involved in decisions that affect them), and it also promotes beneficence (balancing benefits, risks and costs), and non-maleficence (avoiding harm)4. As Slade demonstrates, these arguments may be somewhat more nuanced in the case of people with psychosis or those who lack mental capacity, but few would argue that people with mental health problems should not be given the opportunity to shape their own care whenever feasible. In the UK, ethical and legal guidance from various authorities, including the UK Supreme Court5, the General Medical Council6, and the Mental Capacity Act7, is now fully aligned: SDM should be the default and very few exceptions are permitted. Despite this, as Slade's paper makes clear, around half of mental health service users said they were not involved in treatment decisions to the extent they wanted to be8. Why then has it proved so difficult to secure widespread implementation of SDM? I agree with Slade's contention that the barriers are as much attitudinal as practical and organizational. Commonly voiced objections include concerns about lack of time, lack of skills, lack of resources and misapprehensions about patients' ability to make appropriate choices, all of which act as powerful disincentives to change practice. Most of these perceptions are not supported by the evidence. For example, SDM does not necessarily require longer consultations than more traditional forms of decision making2, and several studies have shown that it is possible to inform and engage patients from all ages, walks of life and educational backgrounds, with benefits accruing to all, including those with low health literacy9. A comprehensive strategy is required to promote wider uptake of SDM. In a recent review of experience in various SDM demonstration sites in North America and Europe, we described ten components that are required to encourage widespread adoption10: a) research evidence showing that it can be effective in a specific clinical or local context; b) medical leadership willing to encourage it; c) demand for SDM from patient leaders and organizations; d) incentives for clinicians to change their practice – ethical, financial or professional; e) training for clinical staff in SDM and risk communication skills, plus support and supervision for practising and maintaining these competencies; f) availability of patient decision aids; g) integration of patient decision aids into electronic medical record systems; h) institutional support for developing and updating patient decision aids; i) certification scheme to assure the quality of patient decision aids; j) validated outcome measures to monitor the extent to which patients feel informed and involved in decisions about their care, plus feedback to enable clinicians to monitor progress. All patients, including users of mental health services, should be encouraged and supported to prepare themselves for an active role in treatment selection. SDM theory, skills and competencies (risk communication, options appraisal, goal setting, care planning and outcomes assessment) should be taught in medical schools, in post-registration training, and in continuing professional development, aligned with support for self-management and patient engagement. Quality-assured patient decision aids should be made available at specific decision points via electronic medical records, so that they are readily accessible during clinical consultations. Appropriate patient reported outcome measures (PROMs) should be used in routine care as a feedback loop to check that patients are actively engaged and receive treatments that reflect their goals and preferences. The tensions that Slade outlines are real, but so is the need to work together to find ways to overcome them to ensure the delivery of appropriate, efficient and effective mental health care. Angela Coulter Nuffield Department of Population Health, University of Oxford, Oxford, UK