“Just because we have mental illness, doesn’t mean we can’t tell if you’re

having a good conversation with your doctor.”

Shared decision-making (SDM), an approach in which health care providers and patients collaborate in making decisions, has been identified as a critical component of person-centered health care. With its roots in attempts to guarantee patients the opportunity to provide informed consent [1]—and bolstered by the adoption of a patient-centered approach that emphasizes self-determination and choice [2]—SDM requires a shift from traditional paternalism to a more dynamic and interactive decision-making process. As collaboration necessitates substantive patient engagement—for which conventional medical practice offers little guidance—and requires meaningful informed consent, unilateral decision-making by providers can no longer be viewed as an adequate or ethical guide for important decisions that have far-reaching effects in people’s lives.

Despite the increased pressure to use SDM, patients and providers continue to identify barriers to sharing decision-making responsibility [3,4,5,6], making sustainable implementation difficult [7], especially in the care of persons with serious mental illnesses (SMI). To be successful, SDM requires replacing a unilateral approach to decision-making with an approach that accounts for, and hopes to counteract, imbalances of power in physician-patient relationships through prioritizing and supporting patient self-determination. While operationalized in a variety of ways, SDM is said to involve three key components: (1) a mutual exchange of information in which patients educate providers about their personal values, preferences, and goals and providers provide high-quality clinical information tailored to these needs in a way that is readily understandable; (2) providers support patients (and potentially important others in patients’ lives) in considering their options; and, (3) arrive at a mutually agreed upon plan for care [8, 9]. Our research has suggested that while these components may be necessary, they may be insufficient to ensure that people are meaningfully engaged in the SDM process.

In a mixed-methods participatory study, we are developing a tool to assess relational quality and collaboration to support physicians and patients. During the course of this work, we had the opportunity to talk to doctors and patients in qualitative interviews, focus groups, and concept mapping sessions, about what was most important to them in their relationships with one another. Based on findings from this research, we will describe four areas—the provider-patient relationship, targets of SDM intervention, focus decisions, and definitions of success—that have the potential to increase the utility, and the chances of implementation, of SDM (see Table 1). Specifically, we explore whether respect—an often cited, yet just as taken for granted, relational quality—may be a particularly challenging, if not missing, ingredient in realizing the ways SDM can transform routine mental health care.

Table 1 ᅟ
Full size table

A Relational Model of SDM

Provider-Patient Relationship

While a collaborative relationship has been conceptually linked to SDM [8, 9], and even considered a critical condition for its use, it is often assumed by current models, with little research to guide providers in creating such relationships in practice. Building collaborative relationships that can sustain SDM may require a more systematic and intentional framework in order to be useful in everyday practice. For example, relational factors are often discussed solely in terms of creating a safe environment, gaining patient trust, and building rapport, and are relegated to amorphous concepts. The relationship is not only a means to an end, however, and should remain a primary, central concern throughout the decision-making process.

Building collaborative relationships is a difficult and complicated matter in mental health care. People with SMI have complicated paths to care and may have experienced suboptimal care, coercion, and a treatment environment that focuses more on illness management than on helping them achieve personal goals. These experiences can result in mistrust of mental health care and perceptions that one’s concerns are not taken seriously by providers. Thus, it is of utmost importance to create an environment in which patients feel safe enough but also are empowered to engage in the decision-making process as equal partners.

Our research has identified a tension between treatment and support. For example, patients wanted to feel confident in their physicians’ expertise and receive high-quality care but feeling supported and respected were important as well. When not present, patients did not value the experience, doubted the expertise and professionalism of the physician, disengaged from treatment, and did not feel they could be honest with providers. Feeling respected and supported involved a variety of factors, including taking the patient’s perspective seriously, reflecting patient preferences, needs, values, and goals, and demonstrating a genuine concern for the patient’s well-being. When patients experienced these relational factors, they described feeling as though they were meaningfully engaged in decision-making and had an amount of say in their care that was in line with their preferences. While having limited time is seen as a major barrier to effective health care relationships and SDM, the findings of our research thus far indicate that this is feasible within the current realities of clinical care, as some patients and physicians indicated they have engaged in SDM in this manner.

Targets of SDM Interventions

SDM frameworks have been largely operationalized in the form of decision aids to assist providers in providing high-quality, thorough clinical information. As a result, much of current SDM thinking addresses only one asymmetry in the provider-patient relationship—the informational asymmetry. In many respects, this makes good sense—when patients have enough medical information, they can participate more in decision-making regarding their care.

Yet medical information alone is not enough to address the overall asymmetry between physicians and patients, as a patient’s lack of medical knowledge is only one of many ways this asymmetry is maintained. While decision aids have resulted in advances in care, the focus on decision aids may have obscured relational factors that also result in existing power differentials. First, decision aids only address half of the informational asymmetry and there is less research to support eliciting patient preferences, values, and goals. Second, our research suggests that rather than focusing on the reciprocal exchange of information between physician and patient, SDM models might be enhanced by targeting the feelings underlying honest and open sharing of information—feelings of support, empathy, and understanding. When patients experienced such feelings, they also described having a satisfying amount of say in their care.

Focus of Decisions

Decisions about care are crucial but they are not the only decisions relevant to recovery. We have found that patients are concerned with a variety of issues, including accommodating for illness in their everyday lives, continuing to occupy satisfying roles in their families and communities, discrimination, financial concerns, and others. Furthermore, patients felt understood when physicians saw them in the contexts within which they were living rather than defining them narrowly in terms of the health conditions they were experiencing. When patients were seen as more than their diagnoses, people described being better prepared to engage in decision-making. Focusing on the other half of information exchange in which patients share important aspects of themselves (e.g., needs and values), requires providers to ensure a safe and comfortable enough relationship in order to elicit these crucial components of SDM. As decision aids have helped providers communicate clinical information, tools could be developed to help create a safe enough relationship to elicit patients’ preferences and goals.

Definitions of Success

Most models of SDM define success in terms of a specific outcome, namely a mutually agreed upon treatment decision. While physicians and patients agreeing with one another is important, SDM research has not provided an adequate framework to assist in the sharing of the decision-making process that could result in such an outcome. We may need first to target the process and quality of the relationship and expand our notion of success to include relational factors. Including components of respect, trust, empathy, and support in the definition of success equips providers with discrete, achievable, and measurable goals to guide the decision-making process. As these factors are already part of high-quality clinical care, SDM can build upon existing strengths.

Research also suggests that mutual agreement may be more complicated than it seems and that the notion that providers and patients should (eventually) agree may be more in the service of making providers comfortable ceding some control and tolerating some risk rather than truly engaging patients in the decision-making process. [10, 11] Moreover, it may be unreasonable for providers to operate from the assumption that patients will relinquish control over decisions that have far-reaching effects on their daily lives [12]. Additionally, our research suggests that some patients did not disclose when they felt uncomfortable with the decision-making process. Instead, they disengaged from care in more subtle ways (e.g., not taking medications or coming to appointments). However, when a collaborative relationship existed, patients felt as though they could take part in decision-making and had room to disagree with providers. While a provider may ultimately disagree with a patient’s decision, the person ultimately chooses and has to live with the outcome of the decision. SDM should thus support the development of empathy, enabling providers to understand patients’ rationales for their decisions.

Conclusion

Recently, researchers have called attention to some missing ingredients of SDM, including the need for integrating patient narratives into decision-making [13], fostering open communication [14], and offering care and conversation along with high-quality information [15]. While these ingredients may improve decision-making, SDM is likely to continue to flounder, and remain difficult to implement, without revising the conceptual model on which it is based. Meaningful collaboration around decisions may require models that prioritize caring, support, and self-determination rather viewing them as distal aspects of the decision-making process. Without such reform, persons with SMI, who may likely benefit the most from collaborative relationships, will continue to be neglected in realizing a more person-centered health care environment.