by Marvin Swartz*
In the last decade, there has been growing interest in patients having a greater voice and involvement in making decisions about their own care. This movement toward "patient-centered care," or patient and physician "shared decision-making," has challenged the traditional idea of the physician as the pivotal decision maker and moved health care toward a more collaborative set of relationships. Several influences toward patient-centered care come from the growing importance of assuring continuous and valid informed consent to treatment; the growing interest in honoring patient preferences, especially at the end of life; and empowering patients to better understand and manage their health care.
This same desire for patient-centered care has been an important element in the recovery orientation in mental health treatment. For persons with mental illness, assuring that their wishes are respected, even during periods of crises, has been a particular challenge. The growing movement toward use of Psychiatric Advance Directives (PADs) offers hope for addressing the challenge of those crises.
PADs are legal instruments that allow competent persons to refuse, or to consent to future psychiatric treatment during periods of incapacity, when they are unable to make decisions. PADs usually have two parts. One is an instructional directive, a document similar to a living will that allows a person to state preferences about future mental health treatment during a crisis. The second is a Health Care Power of Attorney (HCPA), a document that allows a person to appoint a trusted family member or friend to make decisions during a crisis.
Although laws vary from state to state, PADs generally allow people to write these instructions about what kind of care they want if they become ill. PADS allow someone to designate a family member, or someone else, to act as an agent, to make decisions if the person with mental illness becomes temporarily unable to do so.
The goals of PADS are to ensure that people with mental illness are treated in accordance with their wishes.
Advance directives, both psychiatric and medical, are protected by the Patient's Self Determination Act of 1991, or so-called PSDA. This is the federal law which requires any health care facility to ask a patient if he or she has an Advance Directive; if the patient does not have an Advance Directive, the facility must ask if he or she wishes to create one and give some direction about how to execute one. If the patient does have an Advanced Directive the facility is required to retrieve it and follow it.
The PSDA was originally intended to encourage use of Medical Advance Directives. Now that Psychiatric Advance Directives have come on the scene in 25 states, the Patient's Self Determination Act also directs those states to make sure that they attend to whether people have PADs or whether they want to execute them. Even in most of the 25 states that don't have a PAD, a person with mental illness may use the existing advance directive statutes to make Mental Health Advance Directives.
PADs are a method to promote patient autonomy so that patients can make decisions on their own behalf and control their health care. For example, a person may give consent to hospitalization in advance if he or she gets sick and, as a result, the PAD may reduce the need for involuntary treatment. A patient may also choose to consent to or to refuse certain medications and explain the reason for those choices. In this fashion, PADs are a way to improve continuity of care. Someone can use them to impart important information about his or her diagnosis, treatment, or response to treatment, and thereby provide a transportable psychiatric record to use in crises.
The National Resource Center on Psychiatric Advance Directives
The National Resource Center on Psychiatric Advance Directives, funded by the MacArthur Foundation, was formed as a key information resource to learn about PADs. It is the only web portal exclusively devoted to developing a learning community to help people with mental illness, their families, and clinicians prepare for, and ultimately prevent, psychiatric crises. The NRC-PAD includes basic information about PADs, frequently asked questions about them, educational web casts, recent PAD research, legal analyses, and state-by-state information on PADs and patient-centered crisis planning. The NRC-PAD website includes easy step-by-step information to help consumers, family, and clinicians complete PADs that follow the provisions in the PAD statutes. Another resource is the Bazelon Center for Mental Health Law which provides templates in English and in Spanish, and answers frequently asked questions.
*Dr. Marvin Swartz is the Director of the National Resource Center on Psychiatric Advance Directives and Professor and Head of the Division of Social and Community Psychiatry at Duke University Medical Center, Durham, North Carolina.