Why and How Family Caregivers Should Participate in Shared Decision Making in Mental Health

The model of shared decision making has been proposed as the gold standard for patient-physician interaction (1). Shared decision making mainly addresses patient-doctor dyads and aims to reduce information and power asymmetry (2). It strives to enhance patient autonomy (mainly in relation to health care professionals) by providing patients with better information, engaging patients more effectively in consultations, and empowering patients to participate more actively (1). The most widely accepted definition of shared decision making postulates that there are at least two participants (patient and physician), that both parties take steps to participate in the decision-making process, that they share information, and that they arrive at a decision to which they both consent (2). In fact, Charles et al. (2) posited that mutual acceptance and shared responsibility are key elements of shared decision making.

Some regard the implementation of shared decision making as an ethical imperative, whereas others highlight the model's potential to improve outcome parameters, including patient and staff satisfaction (3), attitudes toward treatment (3), compulsory treatment rates (4), and potentially, adherence and relapse rates (5).

Although early definitions of shared decision making (2) explicitly mention the involvement of caregivers or family members (e.g., “It takes at least two to tango”), most conceptualizations and interventions do not explicitly address caregiver involvement. Rather, they focus on dyads—the interaction between patients and health care providers. However, a handful of recent publications address the overlap of shared decision making and caregiver involvement.

Morant et al. (6) argued in a review paper that the model of shared decision making derived from somatic medicine needs to be expanded to succeed in mental health. They emphasize the need to involve multiple stakeholders (e.g., caregivers) and social networks. Bradley and Green (7) gathered qualitative feedback from caregivers and metal health staff on decision making and concluded that mental health professionals valued caregiver involvement as a means of exchanging information and monitoring treatment. In practice, involvement was defined as opinion seeking to shape or consolidate decisions. However, caregivers were involved only if the patient allowed them to be and if they are present in wards or practices and take active steps to be involved, permitting “staff to adopt a passive approach.” Doody et al. (8) published a review on family involvement in care planning. They argued that many families did not feel sufficiently invited or engaged in collaborative treatment planning, and that confidentiality issues were among the most prominent hurdles. Families generally perceived that mental health professionals had negative attitudes toward caregiver involvement (e.g., a “power struggle between families and professionals”). Stomski and Morrison (9) conducted a qualitative study of caregiver involvement in decision making about antipsychotic medication. Most caregivers in this study did not receive sufficient information and were typically excluded from decision making. The authors concluded that family involvement has the potential to enhance decision making by bridging communication gaps, fostering effective information exchange, and emphasizing the concerns of patients and caregivers. Finally, the REORDER study aimed to better implement family psychoeducation, whereby persons with severe mental illness participated in a shared decision-making approach in which family intervention was encouraged (10). This intervention led to increases in family participation and improved patient outcomes.

Taken together, the limited previous research suggests that caregiver involvement could be an integral part of and an enhancement to shared decision making (6–9). However, apart from the REORDER study, none of these studies developed concrete recommendations for overcoming hurdles to caregiver involvement.

There is extensive literature on family and caregiver involvement that highlights the desire of caregivers to be involved in decision making, the prospects of caregiver involvement, and potential barriers to caregiver involvement.

People with severe mental illnesses often exhibit high levels of social impairment, unemployment, and isolation from society. Many maintain close contact with informal caregivers (e.g., parents, partners, siblings, children, etc.) and perceive family support as critical. Informal caregivers therefore play an important role in the recovery process. The literature clearly indicates that caregiver involvement produces better outcomes, including reduced rehospitalization and relapse rates and improved compliance rates. Quite often, the patient’s initial access to professional treatment services is established by caregivers (11). This evidence regarding improved outcomes has led to clear treatment recommendations regarding family intervention strategies (e.g., Patient Outcomes Research Team psychosocial treatment recommendations [12]).

Many caregivers wish to be accepted as partners by mental health care providers, remain informed about clinical decision making, and be given the opportunity to add their expertise. However, their wishes and needs are seldom met (13, 14). Collaborative decision making is not a regular occurrence for caregivers; a lack of communication and confidentiality constraints are among the most often named hurdles (8). There is, again, extensive literature on barriers to family involvement and related strategies to overcome them (15). The REORDER study, for example, highlights shared decision making as a potential facilitator of caregiver involvement (10).

Shared decision making and caregiver involvement have similar prerequisites—namely that professionals adopt long-term and recovery-oriented thinking. Both approaches acknowledge the views of patients and caregivers as well as their special needs and goals. In both models, professionals who are less authoritative and place more emphasis on psychosocial issues allow both patients and caregivers to play a larger role in decision making. Further, any attempt to better implement either shared decision making or caregiver involvement more efficaciously by using structured interventions (e.g., decision support tools) may foster the implementation of the other approach automatically (7).

However, specific features of shared decision making and caregiver involvement might hinder the implementation of the other approach. For example, strengthening the autonomy of the patient—an aim of shared decision making—means that confidentiality must strictly be respected, which might hinder caregiver involvement. Furthermore, greater engagement with patients might lead health care professionals to discern a lesser need to involve relatives. They might even fear conflicts between the caregivers’ opinion and a decision reached though the dyadic relationship with the patient. Finally, the involvement of caregivers always introduces a risk that patients will be overruled by a coalition of professionals and caregivers. Such an agreement might diminish the autonomy of the patient—an outcome that undermines the goals of shared decision making.

Elwyn and colleagues (16) have recently proposed an interesting approach, the three-talk model, for the implementation of shared decision making. While the three-talk model is a dyadic approach (there are three phases in the communication process, not three participants) and is not focused on mental health specifically, it may nevertheless be a good start to expand the dyadic shared decision-making process to a triadic approach.

The three-talk model employs three recursive phases of the shared decision-making process. In the first phase, “team talk,” the team (patient and physician) is established, and choices, goals, and methods of working together are determined. In dyadic shared decision-making, physicians are advised to invite patients to participate in decision making during this phase. For a triadic decision-making approach, this might be the best stage to clarify who else needs to be invited to form the best possible decision team. Thus, at this stage, physicians may invite caregivers, patients may bring caregivers to the consultation, and caregivers may make themselves visible and articulate their preferences. The above-mentioned REORDER study has shown that this is a feasible approach (10).

The first phase also presents the time and place to clarify the caregivers' role in the decision-making process, because caregivers may assume any of a variety of roles, from rather passively accompanying the decision process (e.g., bridging communication gaps [9]) to more actively shaping the decision (7) and even taking over responsibility for their relative. The actual role a caregiver adopts will always be the result of the caregiver’s own preferences and the wishes and attitudes of the patient. The clinician should, in our view, generally encourage caregivers to accept a more active role.

The “option talk” phase focuses on discussing the available options by using “risk communication.” At this stage, decision aids or decision support systems may help patients and caregivers better understand the pros and cons of the various treatment options, especially with respect to the individual patient’s circumstances. At this stage, caregivers may propose further options and present information about the patient’s and the family’s previous experiences. As suggested by Bradley and Green (7), this input might help to shape and consolidate decisions.

In the last phase, “decision talk,” the focus is on building informed preferences and finally making preference-based decisions. In this phase, the caregivers should clearly articulate their preferences.

The roles that caregivers assume might vary considerably, and each role introduces the risk of conflict with either patients or professionals (or between patients and professionals). Two prominent areas of conflict are described below.

First, caregivers may be excluded for various reasons. Very active caregivers may be considered domineering and subsequently be actively excluded by either patients (for reasons of confidentiality) or professionals (who may view caregivers as “difficult relatives”) (8). Additionally, the relationship between patient and caregiver may be burdened by longer-term conflicts (e.g., due to lack of insight, aggressive behavior, or family conflicts) or by easily triggered disputes, and the patient may therefore refuse family involvement. Finally, caregivers may be part of the patient’s delusions, and therefore patients may not consent to caregiver involvement.

Second, caregivers may be included in decision making, but discussions result in coalitions of two people versus one. For example, caregivers may oppose decisions that are made by the patient and the therapist together (e.g., caregivers are very skeptical toward medication or psychotherapy), or caregivers and professionals may form a coalition in opposition to the patient's wishes.

Thus, in cases of disagreement among any of the three parties, legal, ethical and pragmatic approaches are often contradictory, making general suggestions questionable. For example, if a patient does not want his relative to be informed, that is his legal right, but a pragmatic approach would look different. In addition, the literature on triadic decision making among patients, caregivers, and professionals is weak. We are convinced that this issue must be subject to further research investigating triadic decision-making patterns as well as potential solutions in case of conflict.

In this article we argue that caregivers can and should be included in shared decision making. Caregiver involvement might improve clinical decision making and health outcomes for both patients and caregivers. However, caregiver involvement in shared decision making is a relatively unexplored area that needs further attention in research. For example, more information is needed on caregiver skills that facilitate joint decision making and strategies for resolving conflicts between caregivers and patients, beyond one party overruling the other.