Shared decision making is increasingly part of delivering the gold standard in providing patient centred health care. Variously defined, it has at its heart the idea that all decisions are taken jointly between the patient and health professional, on the basis of all available information both about the disease process and its treatment options but also the patient, their values, beliefs, interpersonal resources and treatment preferences. The challenge to delivery is in operationalizing the approach; many providers confuse shared decision making with information provision (Ahmed et al 2014). Documentation and evaluation is usually of outcome rather than the process, with the focus being the experience of the patient rather than the health professional: shared decision making should involve evaluation by both parties.
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The importance of discussing patients’ values has been highlighted by teams using the term ‘decision coaching’ (Stacey et al, 2013) this provides a forum in which the focus is on the decision, the information that the individual is using to support it, how well they understand it, how consistent it is with their coping style and self-concept, and the outcomes they expect. This provides a more thorough example of shared decision making but requires that the process is properly documented and shared with all members of the Multi Disciplinary Team [MDT] at the appropriate point in treatment.
Decisions about surgery that will alter a person’s appearance are interesting in terms of shared decision making because they are particularly ‘preference-sensitive’ (Lee, Hultman, & Sepucha, 2010) ie: the ‘right choice’ depends on each patient’s personal preferences rather than optimal medical control or survival. Such decisions can be difficult for patients to make, so clarifying each patient’s preferences and values is imperative, central to shared decision-making (Makoul & Clayman, 2006) and a key aspect of patient-centred care (Elkadry, Kenton, Fitzgerald, Shott, & Brubaker, 2003). However, treatment decision-making can trigger difficulties in communication between patients and health professionals (Thorne, Bultz, Baile, & SCRN Communication Team, 2005), which can compound the stress around decision-making.
‘Shared decision making’ requires the patient to be actively engaged with a health professional in setting clear, patient-centred goals, which is associated with more positive patient experiences and outcomes (Dept. of Health, 2010; Bergelt & Härter, 2010; Hullfish, Bovbjerg, Gurka, & Steers, 2008; Hansen 2008), particularly concerning preference-sensitive decisions (Politi et al, 2013).
However, whilst there has been much discussion and debate encouraging the use of shared decision making, much less attention has been given to ways of helping health professionals embed this approach within patient care.
In 2011, we developed a new intervention, known as PEGASUS (Patients’ Expectations and Goals: Assisting Shared Understanding of Surgery), designed to enable health professionals to elicit patients’ expectations of surgical outcomes in order to aid discussion and setting of patient-centred goals. It takes place after a patient has been given information about the specific options available to them, since their physique and health status may render some procedures inappropriate or unfeasible from a surgical perspective. PEGASUS involves a ‘decision coach’ (e.g. specialist nurse, psychologist) who has been specially trained in it use and who has knowledge of the particular procedure under consideration. Using PEGASUS, the decision coach helps the patient elicit their individual goals for surgery and what they would consider indicative of a successful outcome. These are written (in the patient’s own words) onto a PEGASUS sheet and the patient rates each goal (from 0-10) in terms of its importance to them. The completed sheet is then used in the surgical consultation to set shared goals and promote concordance between the patient and surgeon, so they approach surgery as a shared endeavor (Stevenson, Cox, Britten, & Dundar, 2004). As part of this process the surgeon ranks the probability of achieving each patient-set goal.
PEGASUS aims to facilitate the disclosure and discussion of patients’ expectations, enabling the surgeon to decide whether these are realistic and, if deemed necessary, take appropriate steps to address unrealistic expectations.
Doctor- (as well as patient-) focused interventions, like PEGASUS, that encourage patients to prepare for and actively engage in consultations are effective at improving satisfaction and health outcomes (Kaplan, Greenfield, & Ware, 1989; Ambler et al., 1999; Gattellari, Butow, & Tattersall, 2001).
PEGASUS has been developed following guidelines for the development and evaluation of complex interventions (Craig et al., 2008).
Failure to understand patients’ preferences has been described as a common ‘misdiagnosis’ that warrants interventions to “transform the role of patients in the NHS from passive users into active and engaged partners in care” (Mulley, Trimble, & Elwyn, 2012 pviii). PEGASUS fits this remit – it is an intervention that aims to promote shared decision making and understanding of patients’ preferences.