Family-Centered Decision Making for East Asian Adults With Mental Illness

Why do many adults with serious mental illness not engage in evidence-based interventions (1)? Providers once believed that many adults with serious mental illness were unable to adhere to treatment recommendations because of the illness itself (e.g., they lacked insight into their symptoms and the benefits treatment might have on the symptoms). Hence, providers felt they needed to find ways to persuade patients to, for example, take their medications. The evolution of recovery-centered systems challenged ideas of adherence in the process of recovery, suggesting that personal life choices (e.g., job, education, or health) should be determined by the persons themselves. Treatment strategies that assist in achieving these goals are undertaken at the discretion of the individual.

Self-determination is choice. This, in part, is an ethical manifesto: that by being human, people have intrinsic rights to choose where they want to live, what they want to do, and how they want to pursue health and wellness. Patient choice is prominent in the statement of President George W. Bush’s New Freedom Commission on Mental Health, which has been endorsed by most state mental health authorities and major advocacy groups. But choice is not just an ethic; it is a psychological reality. People make choices all the time. They drop out of school if they believe it will not help them meet their vocational goals. They take their medications when they perceive the benefit. Health belief models (2), for example, have framed treatment decisions as person-centered processes influenced by weighing and contrasting the harms of a clinical condition against the benefits of its available treatments. Self-determination theory (SDT) is a more recent evolution of psychological models of health decision making (3) rooted in three basic needs: relatedness (wanting to interact with and experience caring for others); competence (seeking to control outcome and experience mastery); and autonomy (striving to be a causal agent in one's own life). SDT has provided the conceptual framework for describing SDM, a clinical strategy that reflects the vision of patient-centered medicine.

FCDM has an intuitive appeal, but examining the concept of heterogeneity can assist in further understanding the impact of this technique. Namely, we are not suggesting that all East Asian patients will opt for FCDM in their mental health care. For example, Gao et al. (11) showed that acculturated Chinese—those living in the United States at the time of the study—were more likely to endorse SDM. Moreover, members of other racial-ethnic groups may prefer FCDM. For example, research among Latinx individuals (12) has described familism and respect as values that are likely to influence family roles in health decision making. Deference shown by adult children to their parents may affect choices about health services. For that matter, service providers should not assume that European Americans, by virtue of their culture, will prefer SDM. The amount of family-centeredness also is likely to vary among patients of Western European heritage.

FCDM processes may vary by other social determinants as well, including gender and age. For example, men are more often viewed as family authorities than women in many East Asian families (13). Hence, fathers may be viewed as more influential in health decisions, whereas actions based on these decisions may be carried out by mothers. Also, health decisions may change as adult children assume responsibility for health care of older parents with disabilities. Children, for example, may decide not to share a diagnosis with a parent who is challenged by a serious illness with a poor prognosis. Consistent with the above assertion on gender, male children may have the most influence on these kinds of decisions. Interest in FCDM also may vary by psychiatric diagnosis. FCDM may be seen as having greater priority for patients challenged by more disabling illnesses, such as schizophrenia.

Engaging in FCDM is not a monolithic experience. Although development of an FCDM manual will inform providers on how to engage patients in this form of decision making, the manual may not necessarily prescribe a portfolio of required steps. For example, the patient and family may wish to limit the breadth of decisions or change family roles as an illness moves from acute to relatively remitted phases. This latter scenario frames FCDM as a dynamic process in which individual patients change their preferences over the course of illness and treatment. In the process, providers should remember that SDM and FCDM are not independent or static processes, but ones that may be mixed and changed during treatment.

Patients, family members, and providers should also be aware of negative consequences of FCDM. For example, bias, stigma, or language barriers may lead some family members to call for deferring treatment even when deferment is not in the patient’s best interest. The choice between SDM and FCDM may also require ethical considerations. What happens, for example, if the patient and family members disagree about family participation in decision making? As psychiatry has evolved, cognizance of the cultural lens in the interpretation of ethical provider behavior has increased (14). Still, our interpretation of psychiatry’s principles of medical ethics (15) prioritizes patient choice, except when patients are minors or are dangerous to themselves or others. Mental health providers ultimately need to promote patient choice with attention to cultural influence.

Although FCDM intuitively makes sense for treating individuals from cultures that value collectivism, we were surprised by the relative dearth of articles in the professional literature specific to this topic. In fact, the handful of studies summarized in this column were among the few we found in the literature. This literature gap calls for more studies, and such investigations might consider two priorities. First, research should further explain preferences for SDM and FCDM and how cultural heterogeneity affects these preferences. The dynamic and mediating effects of social determinants and psychiatric diagnoses need to be included in this work. Second, effects of FCDM per se should be examined. This requires creation of an FCDM manual and fidelity measures, which could be the focus of randomized controlled trials. These trials could examine feasibility, fidelity, and acceptability, as well as impact on patient health and recovery. Assuming first-generation studies of FCDM are successful, subsequent research should identify individual differences that would help providers tailor FCDM to individual patients.