The President’s New Freedom Commission on Mental Health challenged the nation to transform mental health services to create a future in which everyone with a mental illness will be able to recover.1 Many states have responded to this call by attempting to rethink and restructure their mental healthcare services. Two complementary paradigms can help support this work: shared decision making (SDM) and self-directed care.
According to Adams and Drake, SDM entails an interactive process in which clients and practitioners collaborate to make healthcare decisions, assuming that both members have important information to contribute to the process.2 Clinicians offer information about the meaning of a diagnosis and about treatment options and their likely results. Consumers know, or can determine, their own values, preferences, and goals. Self-directed, or consumer-directed, care enables informed consumers to assess their own needs, determine how and by whom these needs should be met, and monitor the quality of services they receive.3
Both concepts support the National Consensus Statement on Mental Health Recovery promulgated by SAMHSA following a conference in December 2004.4 The first three of its ten fundamental components of recovery are self-direction, individualized and person-centered, and empowerment, all of which focus on consumers’ authority to determine their own recovery paths by participating in decisions that affect their lives, including resource allocation. Both self-directed care and SDM demonstrate respect for consumers and move the mental healthcare system toward an assurance that consumers are receiving the services they want—services that they believe will support their recovery.
Both concepts entail a reframing of traditional competence issues, and they can be contrasted with the paternalistic medical care model and the notion of compliance. For a consumer who truly shares in decision making about his/her care, compliance is not an issue. And when a consumer has control over some or all of the resources supporting that care, competence is assumed, even as contingency and crisis planning may be needed.5
For SDM and self-directed care to take hold, the caregiving system’s culture must change. Below we describe what’s needed for each change to occur.
Making care decisions generally is complex for both professionals and consumers; virtually no one within either group is likely to understand intuitively how to engage in a shared process that acknowledges each party’s needs and expertise. Thus, joint participation in a true SDM process requires preparation by all involved.
Consumers need to learn new skills and have access to appropriate information. To make decisions that are right for themselves, consumers need access to appropriate, timely, and relevant information. They need to be able to learn about their conditions as well as the risks and benefits of various treatments. They may need guidance in determining their own individual preferences and values.
While consumers need knowledge, this alone is not enough. They need to develop new skills. For example, they can be encouraged to prepare for appointments by creating lists of questions, engaging in role-playing, bringing someone who can offer support and provide an additional set of ears, or even recording sessions. Most may need to develop the ability to tell their stories briefly.6 Many consumers already use peer support and/or Wellness Recovery Action Plans (WRAP),7 both of which can and do increase their confidence and enhance their decision-making skills.
Clinicians need support. Since SDM is a two-way process, clinicians need support to participate effectively. First, they need to perceive that the process has potential value for consumers, themselves, and the system. Then clinicians need access to training if they are to provide care using new and different techniques. Finally, clinicians need a supportive infrastructure. For example, they may need extra time in sessions or even preparing for them, especially early in their efforts to implement SDM.
Clinicians could begin implementing SDM on a small, local scale. Public and private behavioral healthcare organizations might consider seeking ways to encourage clinicians and consumers to move toward SDM. After all, small steps can change the system incrementally. For example, provider organizations might assemble information or offer computers with access to Web-based information geared to helping consumers understand their illnesses and available treatments. They also might offer training programs to clinicians, helping them understand SDM’s value and the ways they might support their clients in finding information.
CommonGround, developed by Pat Deegan, PhD, and associates, transforms the waiting area of a psychiatric medication clinic into a decision-support center run by people in recovery. Peers help clients use software that prepares them for appointments by organizing their thinking about the issues they want to discuss. The software generates a report clients can bring to their appointments, and the report also is available to the clinician, thereby helping support SDM on both sides.8-10
Self-directed care programs offer consumers the opportunity to decide what services they wish to receive and control some or all of the resources necessary to support that care. Just as professionals and consumers need support to participate effectively in SDM, so they need support if they are to move toward consumer self-direction.