Shared decision making in realistic medicine: what works

2. Defining Shared Decision Making

This section provides some discussion on what SDM is and the associated practical benefits.

SDM 'represents an important shift in the roles of both patients and clinicians' (Elwyn, et al., 2017, p. 1). Although there is no agreed definition of SDM, common themes are:

• 'Stressing the importance of the people we care for and support, and professionals working in partnership, making decisions based on the best clinical evidence, making sure that people are fully informed about risks and benefits, and combining this information with the person's values and preferences' (Realising Realistic Medicine report, 2017) to enable a more person-centred approach to care, and better informed consent processes.
• Within SDM, decisions are made by simultaneously utilising the expert medical knowledge of the clinician with the expert knowledge of the patient (Halpern, 2018), in terms of their values and preferences and 'what matters most to them?', rather than 'what is the matter with them?'
• The principles of SDM are accepted in theory by many patients, clinicians and policy-makers alike (Gulbrandsen, et al., 2016; Elwyn, et al., 2016). However, its practical application is more inconsistent.

Elwyn et al (2017) propose that it is the lack of an agreed set of steps to describe the approach which has led to inconsistencies in uptake to date. Nevertheless, numerous authors (Elwyn, et al., 2017; Coulter & Collins, 2011; Makoul & Clayman, 2006) have conducted research on the key features of an SDM process, as summarised in Table 1. These features combine essential and ideal elements.

Table 1: Key elements of a Shared Decision Making process

Essential elements	Ideal elements
Define/explain problem	Unbiased information
Present options	Define roles (desire for involvement)
Discuss pros/cons (benefits/risks/costs)	Present evidence
Patient values/preferences	Mutual agreement
Discuss patient ability/self-efficacy	Involvement of family or other companions
Doctor knowledge/recommendations	Option and decision discussions in different appointments
Check/clarify understanding	Active listening
Make or explicitly defer decision
Arrange follow-up

Adapted from (Elwyn, et al., 2017; Coulter & Collins, 2011; Makoul & Clayman, 2006)

The key features above are not necessarily meant to act as a step-by-step guide, but rather a starting point through which patients and clinicians can better identify whether or not they are actively participating in SDM encounters and processes. Furthermore, each patient and clinician will have their own style of SDM.

Several authors have offered strategies for undertaking an SDM process/ conversation such as presenting surgical outcomes in terms of best, worst and most likely case (Fisher, et al., 2018), or promoting the 'three talk model' (Elwyn, et al., 2017) comprising three stages: team talk, option talk and decision talk. A key feature of any SDM strategy is allowing the process of decision making to take place over multiple encounters where possible (to encourage a trusting relationship between patient and clinician).

This new style of healthcare decision making has a number of practical benefits: it recognises the right for patients to be involved in their own healthcare decisions; it focuses on treatments and options with more beneficial outcomes (Légaré, et al., 2018; Shafir & Rosenthal, 2012); and it may reduce unwarranted variation in practices. These issues are outlined in more detail at Annex 3.

2.1 Current context of Shared Decision Making in Scotland

This section provides an overview of the current context for SDM in Scotland. The Chief Medical Officer's (CMO) vision is that: 'By 2025, everyone who provides healthcare in Scotland will demonstrate their professionalism through the approaches, behaviours and attitudes of Realistic Medicine' (Realising Realistic Medicine, 2017). SDM is one of the key features of Realistic Medicine as set out in the CMO's last three Annual Reports (2016, 2017, 2018). Realistic Medicine incorporates six interlinked key features:Building a Personalised approach to Care;

• Changing our style to Shared Decision Making;
• Reducing harm and waste;
• Reducing unwarranted variation in practice and outcomes;
• Managing risk better;
• Become Improvers and Innovators;

Realistic Medicine recognises that a 'one-size fits all' approach to healthcare is not the most effective outlook for either the patient or NHS. By recognising the role of patient preferences towards certain treatments (or no treatment) it is argued that there will be less wasted treatment, as patients receive 'the care they need, and no less, and the care they want, and no more' (Mulley, et al., 2012, p. 2).

The need for more person-centred approaches to care (and reducing the focus on the one-size fits all approach) were evidenced from a range of statistics from patient experience surveys and health literacy studies and supported by recent Scottish frameworks and action plans (Gaun Yersel, 2008; House of Care, 2014; Making it Easier, 2017). For instance, 40-80% of information received in consultations is either forgotten or misunderstood by patients (Kessels, 2003) and the rate of information retention reduces as age increases (Kessels, 2003). Furthermore, 43% of English working age adults struggle to understand instructions to calculate a childhood paracetamol dose (Making it Easy, 2014), which flags the importance of dialogue in the clinician-patient relationship. The 2018 Health and Social Care Standards are person centred and based on inclusion in decisions about care and support.

The work on the Scottish burden of disease has highlighted that different geographical areas have specific 'burdens of disease' and as such different priorities in terms of current and future healthcare planning (ScotPHO, 2016). As such, a more efficient means to undertaking health and social care and the associated decisions is warranted, and Realistic Medicine (and SDM) aims to offer this, whereby the preferences of the patient are accepted and understood by the healthcare professional.^[1] Scottish Government undertook two activities in Autumn 2018 to gain a better understanding of the existing views of, and desires for, SDM: a Citizen's Jury - gathering the views of the public; and a 'Realistic Medicine' survey gathering the views of healthcare professionals.

The Citizen's Jury^[2] met over 3 days around the question of 'What should Shared Decision Making look like, and what needs to be done for this to happen?'. This took place between October and November 2018. The jury was enacted by 24 members of the public (from a range of backgrounds - to be representative of the wider community) and comprised of a series of activities including small group discussions, presentations from stakeholders and formulation of policy recommendations. The jury recommendations were focused around: informing, educating and preparing patients to ask questions; creating a culture and support for shared decision making; how appointments are organised; training for professionals and advocacy (Scottish Health Council, 2019).

The Realistic Medicine survey^[3] was disseminated through a variety of channels to gather the views of Health and Social Care practitioners on their understandings of, and future priorities for, Realistic Medicine. Almost 2500 responses were gathered between September and October 2018. Around half of these were from doctors and the remainder from other healthcare professionals. The survey results highlighted that the biggest barriers to making changes and improvements aligned to Realistic Medicine (and SDM) were seen as: insufficient staff time; lack of formal training; and lack of local leadership. The survey also called for the building of a more personalised approach to health care and wider public engagement to improve understanding of Realistic Medicine (and thus SDM). This discussion highlights the importance of SDM. The following section highlights the recent work 'on the ground' in Scotland.

2.2 What do we already know about SDM in Scotland?

This section highlights what we already know about SDM in Scotland in terms of patient and clinician views and practices.

Views of Patients

Recent views of patients in Scotland around SDM have been gathered through three main sources - the Scottish Care and Experience Surveys (2018)^[4], the Citizen's Panel^[5] responses, and the General Medical Council's (GMC) report on attitudes to consent and decision making^[6]. The key findings are:

Satisfaction with care:

• Patients were generally positive about the care they have received through their GP practice (83%) (Health and Care Experience Survey, 2018);
• 76% of patients felt that being listened to and given sufficient time to speak to their GP were key for 'good consultations' (Health and Care Experience Survey, 2018);
• Patients reported positive results in feeling comfortable asking a doctor about treatment risks and benefits (87%), but fewer respondents have actually asked such questions (54%) (Citizens Panel 2, 2017);
• Clinicians should demonstrate a friendly demeanour and active listening, use simple language and display information in a range of formats (GMC, 2018).
• Improvements could be made around how well patients are kept informed within A&E and post-hospital care (Inpatient Experience Survey, 2018);

Relationship with doctors/clinicians:

• Still a 'doctor knows best' culture within Scotland - many respondents (41%) would feel uncomfortable asking to speak to another doctor (i.e. for a 2nd opinion) (Health and Care Experience Survey, 2018);
• Yet in another survey, 35% would be comfortable asking to speak to another doctor, 71% would be comfortable asking to be referred to a specialist (Citizens Panel 3, 2017);
• Most patients wanted information via face-to-face consultations with their doctor (or nurse) (Health and Care Experience Survey, 2018);

Relationship with other healthcare professionals:

• There is a desire for stronger relationships between healthcare professionals and patient (Health and Care Experience Survey, 2018);
• Considering healthcare professionals other than doctors, patients felt most comfortable asking a nurse about treatment/care options (91%), and less comfortable asking social care professionals (65%) and counsellors/ support staff (65%). Patients cited level of knowledge/ training as reasons (Citizens Panel 3, 2017);

Decision Making

• No common suggestions for the type of information that would help with SDM;
• People generally feel it is not always warranted or possible to involve patients in decision making e.g. due to certain characteristics or circumstances (GMC, 2018);
• Some patients may prefer to leave the decision making to the Healthcare Professional;
• Other groups wanted more involvement in decisions (i.e. patients with limited English);

Views of Healthcare Professionals

There has been little research and studies conducted on clinicians' views of SDM in Scotland to date and thus this section will draw on broader UK and international findings which may be illustrative of the Scottish perspective. Specifically these are the GMC report on Doctors attitudes to consent and shared decision making^[7] (2017) and findings from wider academic literature. The key findings are:

• There is familiarity with broad SDM principles and willing adherence to varying degrees (GMC, 2017);
• Clinicians were most likely to inform patients of their choices rather than any other aspect of SDM (Kunneman, et al., 2016);
• Attitudes towards the degree of when and how SDM should take place is varied (Frerichs, et al., 2016);
• There is less familiarity with individualising SDM conversations (GMC, 2017);
• Clinicians' perceived lack of time to understand individual patients' needs/wants, capacity and expectations (GMC, 2017);
• Clinicians were concerned around how to explain complex information in a way that patients will understand it when there is a lack of good current evidence of the risks and benefits of some treatments (GMC, 2017);
• The biggest barriers of further implementation of SDM by healthcare professionals are: time constraints; lack of applicability due to patient characteristics; and, lack of applicability due to the clinical setting (Gravel, et al., 2006);
• Most studies predominantly only concern the views of doctors. Further studies should be conducted on other healthcare professionals' views (Forcino, et al., 2018).

2.3 Summary

Overall, there appears to be a consensus across many of the views of clinicians and patients. The majority of patients are keen to receive more information about their healthcare, and the majority of clinicians are eager to identify the best ways to obtain and provide such information. However, there was a not a single dominant view from patients on the type of information that would help them to make such decisions around their healthcare. Thus there may be a need to conduct research into what this information could look like.