Respect and shared decision making

My third research question studied the relationship between respect and shared decision making. The interest in the connection between respect and SDM was motivated by studies showing that although SDM has the potential to improve quality of care, it has not been implemented widely. Montori et al. found that SDM in chronic care was

different from SDM in acute care principally because patients play a far more active role and the decision making happens over longer periods of time (Montori, Gafni & Charles, 2006). Moreover, partnership through the patient-clinician relationship is central

(Montori et al., 2006). In addressing health care that is focused on the relationship, others

176 suggest that respect is an important behavioral component of relationship centered care (Beach & Inui, 2006). As such, I expected that respect was key to making SDM possible.

Respect is important for relationships and for patients (Quigley et al., 2014). In one study of 28 sub-specialties, respect was the most appreciated aspect of the clinician’s

communication style in 23 of the 28 studies (Quigley et al., 2014). In other studies, respect was rated more highly than participating in decision making (Beach et al., 2005;

Beste, 2005; Joffe et al., 2003). It seemed intuitive, therefore, that respect would be important to sharing decisions in primary care clinical encounters. However, I found that respect was important in all types of decision making, shared, clinician and patient-led.

This study showed that participants embody various roles during an encounter, depending on their preference for decision making and the decision being made.

Similarly, Lupton argued that patients portray a spectrum of roles, from passive patients in a paternalistic relationship to customers exercising choice in a consumerist relationship (Lupton, 1997). While prior research focused on the different roles that patients

embraced, this study found that respect is related to how both patients and clinicians perceive decision making. For example, when clinicians made the final decision, they usually justified their decision making on medical necessity. They described clinician-led decision making as respectful when patients respected their medical expertise. Clinicians also described respectful aspects of clinician-led decision making where they first saw the

177 patient as a person. By factoring patients’ personal contexts into treatment plans,

clinicians felt they were respectful. As such, clinicians described adopting a dominant decision making style that was tempered by partnership before the decision was made.

Likewise, when patients made decisions, clinicians described themselves as comfortable with this decision-making style because they respected the patient’s expertise in their own health. Patients also noted that it was respectful of clinicians to respect their decisions, especially when they differed from what the clinician recommended.

Participants agreed that over 80% of the decisions reviewed involved SDM. When decisions were shared, both participants described respectful attributes that I later coded as seeing the patient as a person in a broader social context; validating patient’s concerns;

feeling comfortable in the encounter and respecting the clinician’s expertise.

Accordingly, respect was related to SDM through both patient and clinician attitudes, emotions and behaviors. The characteristics of respect described influenced the flexibility in the roles participants adopt when making decisions and accepting why the decision is being made. Contrary to initial assumptions that respect would only be related to shared decision making, this study found that participants described varying styles of decision making respectful, regardless of who made the decision.

An exploration of SDM frameworks may help explain some of the similarities between the descriptions of respect and varying decision making styles. SDM outlined by

178 Charles et al. requires (1) at least two participants, clinician and patient (2) that both participants are involved in the process of treatment decision making (3) information sharing and (4) a treatment decision is made that both parties agree to (Charles et al., 1997). Participants’ descriptions of decision making as two participants, listening, explaining and validating patient’s concerns with a final decision being made by the clinician/patient/shared, which both participants accept is similar to the Charles SDM model. As such, various styles of decision making can be termed SDM regardless of who makes the final decision, once both participants agree to it. Therefore, it may be an artificial construct to focus on degrees of final decision making (patient-led, clinician-led or shared) instead of the broader decision making process. Indeed, expanding on the Charles et al. model, Montori et al. suggest that a key difference between SDM in acute care and shared treatment decision making for chronic conditions is the emphasis on a partnership throughout the decision-making process (Montori et al., 2006). The authors propose a model that begins with a partnership, considers bi-directional information exchange, a process of deliberating the options and deciding on a treatment, but ends with the patients having a much greater role in ‘acting on the decision’ outside of the

encounter in their broader social context (Montori et al., 2006). Finally, earlier SDM models have been further expanded upon to focus on the ‘collaborative deliberation’

model (Elwyn et al., 2014). Unlike the findings in this study, the collaborative

179 deliberation framework does not characterize decision making by who makes the

decision but by the process that precedes decision making. Given that this model closely reflects my findings of how respect relates to decision making and the clinician-patient relationship, it may be more relevant to focus on how respect is related to the decision-making process rather than actual decision decision-making. The authors argue that the lead in decision making will change depending on the type of decision being made as well as participants’ preferences for decision making (Elwyn et al., 2014). Framing the findings of this study within a broader conceptual framework of shared decision making as a process based on a partnership explains why respect is related to shared decision making regardless of who makes the final decision.