Many people with serious mental illnesses do not seem to adhere to treatments as prescribed. In this Open Forum we propose that the concepts of self-determination and choice make greater sense of this phenomenon than the concept of treatment adherence and nonadherence. In 1990, one of us (PWC) coauthored an article published in this journal titled “From Noncompliance to Collaboration in the Treatment of Schizophrenia” (1). The article noted that many people with serious mental illnesses did not benefit from recommended practices, in part because they did not fully participate in them. The 1990 article sought to expand on outdated notions of resistance and compliance by framing treatment decisions about evidence-based practices as a collaborative partnership. Although the model described in the 1990 article was a substantial improvement over ideas of the time, it was nevertheless limited, and further shifts in conceptualizing this phenomenon were required.
To support such shifts, we formed the Center on Adherence and Self-Determination (www.casd1.org), which is funded by the National Institute of Mental Health. The first five authors of this paper are co-principal investigators of the center. Self-determination is the crux of the new model, and choice is at the heart of self-determination. We begin this Open Forum by briefly recapping what research has shown—that many people with serious mental illnesses do not fully benefit from available evidence-based care. To make sense of this shortfall, we then consider the evolution of ideas in psychiatric practice, from resistance through collaboration to self-determination. The evolution paralleled a significant change in the mental health system, with themes of recovery, hope, and empowerment becoming more salient. The evolution also informs strategies for helping people decide which services will benefit them, and this Open Forum ends by describing decision-making processes.
Compelling evidence supports certain practices as state-of-the-art care for people with serious mental illnesses, including medication management, assertive community treatment, supported employment, family education and support, illness management and recovery, and integrated co-occurring disorders treatment (2). However, many people with serious mental illnesses do not seek out or fully participate in these evidence-based practices (3,4). Investigators have summarized research findings in this area. Here we provide only a brief recap. Findings from the Epidemiologic Catchment Area Study (5), the National Comorbidity Survey (6), and the National Comorbidity Survey Replication (7) show, for example, that 30% to 40% of people who might benefit from psychotropic medication do not seek it out. The Schizophrenia Patient Outcome Research Team examined participation in psychosocial treatments (8). Less than half of people who completed the survey acknowledged participating in psychosocial services, less than a quarter were involved in family interventions, and only about 10% received some form of assertive community treatment. Although this pattern is often framed as the problem of nonadherence, we propose that in thinking about these findings, the concept of self-determination is theoretically and methodologically more fruitful.
Self-determination is choice. In fact, it could be stated as an ethical manifesto: the essence of being human is the right of persons to choose where they want to live, what work they want to do, with whom they wish to affiliate, and how they wish to pursue spiritual, educational, and recreational goals (9). But choice is not just an ethical issue—it is also an observational and psychological reality. People choose all the time. They drop out of school if it does not meet their vocational or other developmental goals. They exercise daily if it is consistent with their vision of wellness. They take a medication when they perceive it to have a positive impact. Not all choice is necessarily good. People opt to take steps that do not necessarily lead to health and wellness. However, the option to make such choices does not call for an external override. People with serious mental illness, like everyone else, should have the dignity to fail—that is, to make choices that ultimately are the wrong choices (10).
We believe that self-determination represents the next stage in understanding the idea of adherence, an idea with a long and tortuous evolution in psychiatric services. At the extreme have been ideas such as resistance (the hypothesis that intrapsychic processes block a person from fully engaging in treatment) and medication compliance (a judgment about a person's behavior—that is, whether the person is taking medication to avoid symptom remission) (11). The idea of adherence overtook that of compliance: practitioners noted that consumers should be actively involved in treatment decisions (12). In our 1990 article in Hospital and Community Psychiatry, we posited that collaboration was the next step in this conceptual evolution (1). The concept of collaboration recognized the expertise of the care provider (in disease processes) and of the consumer (in personal experiences); it was insightful for its time and elevated the “patient” to equal status with the provider. The idea of engagement subsequently emerged, and researchers focused on understanding processes to help the provider engage the consumer in a collaborative relationship.
Self-determination is based on several important paradigm shifts that psychiatry has witnessed since the 1990 article on collaboration. Central among them is the idea of recovery, which fosters a person's hope in attaining goals. Recovery reintroduces ideas of “future” and “aspiration.” It is a complex construct to which many features have been attributed: it is a process in which people are able to live, work, learn, and participate fully in their communities; it is the ability of persons to live a fulfilling and productive life while they adjust to a disability that is only one of the many characteristics that define their existence (13). Recovery may also imply the reduction or complete remission of symptoms.
Out of recovery comes empowerment. Some believe that personal empowerment and self-determination are different sides of the same coin. A hierarchical factor analysis of a measure of empowerment showed that empowerment comprises two higher-order concepts that reflect aspects of self-determination: a self-orientation and a community orientation to personal empowerment (14). A self-orientation reflects the ideas of personal agency and confidence in deciding about and following through on goals and choices. What must a person have in place to successfully determine his or her direction? A community orientation redirects the lens of self-determination: what must the system do to make sure people have power over their choices? Self-determination is promoted by helping a person to become personally empowered and by directing the community not to throw up barriers to the process.
Self-determination does not grant someone carte blanche to pursue personal goals regardless of the impact on others. Self-determination should be understood vis-à-vis the types of limitations experienced by most adults. In general, people are expected to make decisions that reflect not only their interest but those of other important people, such as friends, family, coworkers, and others in the community. Responsibility can be seen as a restraint on self-determination. Individuals with mental health problems may see themselves as responsible for participating in treatment so as not to burden others. The recovery movement also advocates taking responsibility for one's health and well-being, and we believe that doing so is part of becoming empowered and self-determined (15). This approach suggests that people with mental illnesses are just like others, capable of making important choices and therefore deserving of self-determination. Self-determination requires a balanced perspective, exercising personal agency while responsibly considering the concerns of others.
The core of the 1990 article described behavioral strategies to facilitate collaboration; such strategies relied mainly on operant conditioning and social learning (1). We focused on skill learning by both the provider and the person with mental illness, communication among family members, and control of aversive aspects of interventions and the clinics in which services are provided. Here we expand on these strategies by adding others that enhance the two aspects of empowerment noted above: approaches aimed at the “self” to better enable a person to understand health decisions and approaches aimed at the community to ensure that it provides adequate resources and services rather than creating a barrier to self-determination.
Nevertheless, a note of caution should be sounded. In helping to facilitate treatment participation by people with mental illnesses, it may appear that we are reverting to the concept of adherence. The goal of adherence is to get people with mental illnesses to accept the treatment that is recommended for them by expert providers. Instead, self-determination means that a person decides for him- or herself the direction and nature of the intervention, with service providers occupying consultative and supportive roles. Strategies discussed here are meant only to facilitate the decision or the treatment-related behavior once the decision to participate has been made.
Helping a person make decisions
Health decisions related to adherence are more difficult when the person does not fully appreciate the ramifications of those decisions. Shared decision making is a fairly well-developed and well-evaluated approach to choosing among health options that is designed to facilitate the process of making health decisions (16). Shared decision making combines three basic principles and strategies. First, a person is helped to examine the costs and benefits of health options. The person is encouraged to identify and make sense of the advantages and disadvantages of a specific evidence-based practice (for example, medication, supported employment, or family services) for a specific problem caused by the illness (for example, symptoms, disabilities, or poor quality of life). Second, the person is provided with information to conduct this assessment—for example, information that helps the person understand his or her life goals, the disabling nature of the disease, available treatments, and other relevant parameters. Creation of a meaningful education process involves the development of a variety of user-friendly information channels. These may include face-to-face classroom endeavors that include people with serious mental illnesses as mentors. Third, health-related decision making is fundamentally a social exchange between person and provider. Skills that enhance the qualities of the exchange have positive effects on treatment decisions. Such skills have been incorporated into motivational interviewing, which suggests that the exchanges that characterize shared decision making are not simply an actuarial process in which costs and benefits are weighed, but instead encompass the cornerstones that form the basis of good therapeutic relationships, such as empathy, genuineness, and promotion of self-efficacy (17). Each of these points is more fully discussed below.
Research has examined shared decision making for a variety of illnesses, including treatment decisions related to cancer, heart disease, prostatic hypertrophy, gastrointestinal disorders, substance abuse, and mental illnesses. Reviews of these studies suggest a mixed impact (18,19). Findings from randomized controlled trials have indicated that shared decision making leads to enhanced satisfaction with and more knowledge about treatments and providers. In some cases, shared decision making appears to have a positive impact on factors related to adherence. However, findings have also suggested that shared decision making does not always yield appreciable change in health decisions and behaviors.
Shared decision making may have a limited impact on some people with serious mental illnesses because of their cognitive deficits. Some people who have dysfunctions in information processing are unable to balance the advantages and disadvantages of specific health decisions. Cognitive therapies have been developed and tested to better enable a person with such deficits to make treatment decisions and change behaviors. Cognitive adaptation training is a good example, with a growing body of supporting evidence (20,21). This training provides a person with compensatory strategies and environmental supports that are designed for specific evidence-based practices. For example, cognitive adaptation training counselors work with a person to remove old medications from the bathroom cabinet, place all current medications in a daily pill box, and record a message linked to a computer alarm: “It's time to take my medication.”
Decision making is not entirely a rational process. Behavioral economists have argued that people often rely on cognitive shortcuts that may not be the most “rational” but that serve the perceived needs of the moment (22). Social psychologists point to implicit processes as a mechanism for understanding such shortcuts (23). An implicit process involves automatic cognitive functions that occur outside a person's awareness or attention. For example, having an implicit positive attitude about a medication (“Drug X will help me greatly!”) at moment Y is spontaneously associated with a decision to take that medication. A second fallacy is the belief that health decisions are “planful”—namely, that a person's decision on Sunday will influence whether the person takes his or her medication the following Thursday. The immediacy of a context often drives a decision.
Removing community barriers to self-determination
The second set of approaches identifies and addresses community hurdles to self-determination. Three approaches are considered: educating stakeholders about self-determination, reducing legislation that restricts empowered decisions, and streamlining interventions so that participation is not onerous.
Professional education about self-determination.
Although providers' awareness of the concepts of recovery and self-determination seems to be increasing, many hold tenaciously to old notions that people do not overcome serious mental illnesses. Many medical and residency programs have incorporated recovery principles into training in order to educate a new generation of psychiatrists and other professionals about the treatment paradigm shift (24). For example, some programs have created partnerships between trainees and people with serious mental illnesses so that the former can learn first hand about recovery issues. There is some evidence that endorsement of recovery principles by mental health professionals is associated with their implementation of evidence-based practices and strengths-based approaches (25).
Laws and policies that promote recovery.
Efforts have been made to codify principles of recovery and self-determination. Legislation addressing such diverse issues as outpatient commitment (26) and psychiatric advanced directives (27) has furthered such codification efforts. Policies promoted at the executive level of government have also helped codify principles of recovery and self-determination. The New Freedom Commission of President George W. Bush described a recovery-oriented system (9). States have undertaken efforts to promote self-determination, such as by mandating meaningful involvement of consumers and families in government decisions, especially in terms of new spending; by supporting consumer-developed and consumer-operated services; by promoting consumer-responsive crisis planning and advance directives; and by establishing statewide recovery education programs (28,29).
Convenience and immediacy.
Service providers have sought to make evidence-based practices more convenient for consumers. The notion of “convenience” may appear to minimize the importance of evidence-based treatment, but in general people choose options that make fewer demands on their behavior. Thus practical, grassroots approaches to services have emerged over the past decade. Some clearly reflect contemporary perspectives: move services out of the office and make them available outside the 9-to-5 workday schedule so that people can obtain help when and where they need it. Such principles are central to community support programs and assertive community treatment (30), and they are especially relevant to serving people with serious mental illnesses who are homeless or involved in the criminal justice system (31).
Self-determination represents the latest evolution of the paradigm formerly encompassed by the concept of treatment adherence. As a result, perspectives on service participation have moved away from “shoulds”—a person should take his or her medications or should show up weekly for case management—to decisions and behaviors. What is the best option for a person to achieve his or her personal goals, whether the goal is to experience less distress from symptoms or have a better quality of life by living independently? The evolved paradigm calls for a different direction. The appropriateness of a treatment is determined by a person's perception of its importance and satisfaction with its processes and outcomes. For example, having fewer symptoms of depression is a priority for one person, whereas having more meaningful friendships, regardless of mania, is essential for another. Self-determination rests on a human ethic and reflects a psychological reality: people should have the freedom to choose, and they make choices all the time.
Promoting self-determination may present a challenge to the mental health system. Some providers and stakeholders will continue to believe that a consumer who opts to forego a recommended evidence-based practice is making an ill-considered and risky decision, rather than an informed choice that reflects his or her current preferences and understanding. Educating professionals, paraprofessionals, and all other stakeholders is an essential step in helping to ensure that people determine for themselves the best treatment options. Research efforts should parallel this paradigm shift to document the impact of approaches that promote self-determination as well as the mediating and moderating factors that enhance their effects.
This work was supported by grant MH085981from the National Institute of Mental Health. The content is solely the responsibility of the authors and does not necessarily represent the views of the National Institute of Mental Health or the National Institutes of Health.
Dr. Marcus has served as a consultant to Bristol-Myers Squibb, Eli Lilly and Company, AstraZeneca, and Ortho-McNeil Janssen Scientific Affairs. The other authors report no competing interests.