Psychiatric advance directives are legal documents used by competent persons to declare their preferences and instructions for future mental health treatment, or to appoint a surrogate decision maker through Health Care Power of Attorney (HCPA), in advance of a psychiatric crisis, during which they may lose capacity to make reliable health care decisions .
In the United States, although 25 states have now passed legislation in the past decade establishing authority for PADs, there is relatively little public information available to address growing interest in these legal documents . In addition in states without explicit PAD statutes, very similar mental health advance care planning can and does take place under generic HCPA statutes—expanding the audience for PADs to all 50 states (see National Resource Center on Psychiatric Advance Directives).
In addition to recognizing the potential benefits of PADs, states are beginning to recognize legal obligations under the federal Patient Self-Determination Act of 1991, which includes informing all hospital patients that they have a right to prepare advance directives and — with certain caveats — that clinicians are obliged to follow these directive. As such, federal law helps ensure that people with mental illness can use medical advance directives to specify mental health treatment preferences or assign proxy decision-makers for mental health decisions.
Finally, the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) requires behavioral health facilities to ask patients if they have PADs. The Centers for Medicare and Medicaid Services announced that patients have the right to formulate advance directives and to have hospital staff and practitioners who provide care in the hospital comply with these directives. Hospitals out of compliance risk loss of Medicare and Medicaid revenue. While there are legal reasons to provide good crisis planning using PADs, the clinical reasons are equally compelling. If followed by treatment providers, crisis planning using PADs will help patients gain better access to the types of treatment that work best for them — especially during times when they are most in need of care but least able to speak for themselves. Health care agents will be instrumental in providing inpatient clinicians with information that can be central to patients’ treatment, including history of side effects and relevant medical conditions.
While there are legal reasons to provide good crisis planning using PADs, the clinical reasons are equally compelling. If followed by treatment providers, crisis planning using PADs will help patients gain better access to the types of treatment that work best for them — especially during times when they are most in need of care but least able to speak for themselves. Health care agents will be instrumental in providing inpatient clinicians with information that can be central to patients’ treatment, including history of side effects and relevant medical conditions.
Further, the very exercise of preparing a PAD, and discussing it with a mental health professional, will enhance therapeutic alliance and improve chances outpatient clinicians can coordinate crisis intervention. Indeed, recent data from a NIH-funded study conducted by researchers at Duke University has shown that creating a PAD with a trained facilitator increases therapeutic alliance with clinicians, enhances patients’ treatment satisfaction and perceived autonomy, and improves treatment decision-making capacity among people with severe mental illness .
Morever, PADs provide a transportable document — increasingly accessible through electronic directories - to convey information about a patient’s treatment history, including medical disorders, emergency contact information, and medication side effects. Clinicians often have limited information about psychiatric patients who present in crisis centers or hospital emergency departments. Nonetheless, these are the typical settings in which clinicians are called upon to make critical patient-management and treatment decisions, using whatever limited data may be available. With PADs, clinicians could gain immediate access to relevant information about individual cases and thus improve the quality of clinical decision-making—appropriately managing risk to patients and others’ safety while also enhancing patients’ long-term autonomy.
For these reasons, PADs are seen as an innovative and effective way of enhancing values of autonomy and social welfare for consumers with mental illness. Since PADs are among the first laws that are specifically intended to promote autonomy among people with psychiatric disabilities, wider use of PADs would empower a traditionally disenfranchised group at the moments of their lives where they are most vulnerable and in need of quality care.
National surveys in the United States indicate that although approximately 70% of consumers with mental illness would want a PAD if offered assistance in completing one, less than 10% have actually completed a PAD . What explains the difference between interest in and completion of PADs?
First, some people with mental illness report difficulty in understanding advance directives, skepticism about their benefit, and lack of contact with a trusted individual who could serve as proxy decision maker. The sheer complexity of filling out these legal forms, obtaining witnesses, having the documents notarized, and filing the documents in a medical record or registry may pose a formidable barrier.
Second, recent studies of mental health professionals’ attitudes about PADs suggest that they are generally supportive of these legal instruments, but have significant concerns about some features of PADs and the feasibility of implementing them in usual care settings. Clinicians are concerned about lack of access to PAD documents in a crisis, lack of staff training on PADs, lack of communication between staff across different components of mental health systems, and lack of time to review the advance directive documents.
In a survey conducted of 600 psychiatrists, psychologists, and social workers showed that the vast majority thought advance care planning for crises would help improve patients’ overall mental health care . Further, the more clinicians knew about PAD laws, the more favorable were their attitudes toward these practices. For instance, while most psychiatrists, social workers, and psychologists surveyed believed PADs would be helpful to people with severe mental illnesses, clinicians with more legal knowledge about PAD laws were more likely to endorse PADs as a beneficial part of patients’ treatment planning.
However, many clinicians reported NOT knowing enough about how PADs work and specifically indicated they lacked resources to readily help patients fill out PADs. Thus, if clinicians knew more about crisis planning and had ready assistance for creating PADs, they said they would be much more likely to help their clients develop crisis plans.
It thus has become clear that the potential significance of PADs is becoming widely recognized among influential policy makers, clinicians, family members, and patient advocacy groups but that significantly more concerted efforts at dissemination were needed. The community of stakeholders interested in PADs and the broader concept of self-directed care are in need of online resource and gathering place for exchange of views and information. As a result, in the United States, a collaboration between the Bazelon Center for Mental Health Law and Duke University has led to creation of the MacArthur Foundation-funded National Resource Center on Psychiatric Advance Directives, 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, frequently asked questions, educational webcasts, web blog, most recent research, legal analyses, and state-by-state information on PADs and patient-centered crisis planning. The NRC-PAD website thus includes easy step-by-step information to help consumers, family, and clinicians complete PADs that mirror the provisions in the PAD statutes.