By Heidi McLeod
Recent policy legislation is replete with references to shared decision making (SDM) as a way of improving the quality of care in clinical encounters (PPACA 2010). Even though these are unfunded policy exhortations, researchers are encouraged to pursue shared decision making, a process where clinicians share evidence based options with patients while respecting their needs and preferences, as an ethically viable form of healthcare delivery (Elwyn et al. 2012). In discussing how shared decision making can contribute to reducing the costs of healthcare, there has been a call to focus on patient preferences (Mulley, Trimble and Elwyn 2012). To date however, the research around shared decision making has focused more on risk communication and the process of information sharing than on the more holistic aspects of shared decision making; notably, the concept of respect.
Respect is defined as “recognition of the unconditional value of patients as persons” (Beach et al. 2007) and is as important to patients as information sharing and being involved in decision making. Indeed, both being treated with respect and decision making has independent associations with adherence, satisfaction and preventive care (Beach et al. 2005). Clinicians who are perceived as respectful to patients are shown to provide more information and express more positive affect in these visits (Beach et al. 2006). Therefore, one could postulate that without having a foundation of respect, a concept that is central to shared decision making, the rest of the process may falter. This may explain that despite decades of research, hundreds of trials, thousands of papers and policy initiatives, shared decision making has failed to take root and be implemented in everyday practice. By continuing to ignore the concept of respect in shared decision making, we are disrespecting respect.
The disrespect for respect is further evident in how we measure shared decision making. The gold standard for measuring whether shared decision making has actually occurred within an encounter is the OPTION scale (Elwyn et al. 2003). The OPTION scale assesses to what extent the clinician has engaged in shared decision making with patients and is based on a 12-point scale which determines the efficacy of the decision-making process. OPTION as well as other scales to measure shared decision making (e.g. DEEP-SDM) are not designed to measure respect (although some items may reflect respectful practices), thus it is clear that respect is not recognized as a fundamental or at least measurable construct of shared decision making. As such, we lack the necessary tools to answer important theoretical and practical questions on the importance of respect in the shared decision making process. Developing a measure of respect could further our understanding of shared decision making as a theoretical construct. This will have practical consequences as a better understanding of respect may help researchers develop interventions to promote and clinicians to practice respect with their patients.
Developing a measure of respect has its own challenges, especially as the concept has not been clearly described by patients and clinicians. Most studies that look at respect use single item survey questions that assume the definition of respect is sufficiently intuitive to respondents. How respect is operationalized as a measure may also be problematic. While we are grappling with these issues in developing a measure of respect, we can look towards research in the healthcare communication literature as a guide on how respect may impact outcomes. Patient-centered communication can influence how satisfied patients are with their clinicians and the encounter itself and can affect adherence (Finset 2014). More psychosocial (non-biomedical) language is also associated with higher patient satisfaction (Roter et al. 1997). This is an area which can potentially help us to understand the effectiveness of SDM, particularly if we can develop a measure of respect based on verbal and non-verbal cues in the encounter. If we think about measuring the complexity of SDM in a broader framework, degrees of shared decision making bounded by respectful communication may become evident. As recently described, measures might not tell us only about the performance of a process, they might actually “drive the performance” and as such, “the right measure can be transformative” (Collins 2014).
We have been discussing shared decision making at a research and policy level for a long time. Yet there has been a disconnect between research and practice. By being able to measure respect for patients and their needs and preferences, the emergent conversation around treatment options might be far more shared than the present focus on risk communication suggests. If we begin to pay more attention to other aspects of shared decision making, and consider ways of measuring such concepts as respect, we may facilitate shared decision making’s translation into practice and improve the quality of the clinical encounter for patients and clinicians alike.
Michael Gionfriddo, Pharm.D and PhD candidate in the KER Unit at Mayo Clinic, contributed to this blog by editing various drafts.
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Mulley, A.G., Trimble, C. and Elwyn, G. (2012) “Stop the silent misdiagnosis: patients’ preferences matter” BMJ 2012:345
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Collins, A. (2014) “Measuring What Really Matters. Towards a coherent measurement system to support person-centered care” Thought Paper. The Health Foundation.