Advance care planning: a multifaceted contributor to human rights‐based care

Galderisi et al1 address advance directives in the section on non-discriminatory mental health law, illustrating the need for better operationalization of concepts such as “will and preferences”, if we are to honor persons’ autonomy consistently and meaningfully. Advance directives provide useful fodder for debating autonomy and decision-making capacity in the midst of health crises. However, I would like to expand here upon their broader relevance to a human rights framework of mental health care. Advance directives – and the overarching practice of advance care planning – instantiate several of the core principles and concerns of the human rights framework, and do so well before they may be relied upon during a period of decision-making incapacity. Advance care planning is an essential component of person-centered care. It empowers individuals to consider and express their health care values. Its process and products (e.g., an advance directive) are literal exercises in self-determination, autonomy, empowerment and responsibility. Indeed, individuals with mental illnesses who have completed advance directives report increased feelings of self-determination, autonomy and empowerment2. A corollary of the emphasis on self-direction in recovery is recognition that all individuals have personal responsibility for their own self-care and actively take part in their recovery journey. This focus on responsibility coincides with an understanding of mental illness as a chronic health condition, one that requires ongoing efforts by people to not only attain but maintain their wellness. Although there is no universal definition of recovery, common elements in addition to autonomy and self-determination include relationships and respect3. Recovery may emphasize and center people in their own care and well-being, but it also recognizes the importance of relationships with loved ones and communities. Among the responsibilities of communities is providing resources and opportunities to address discrimination and to promote inclusion. Respect is included because acceptance of and appreciation for people with mental illnesses by communities and systems, including health care systems and actors, are requisite for achieving recovery. Relatedly, individuals with mental illnesses who have completed advance directives report increased feelings of working alliance with providers2. Thus, in these ways and others4, the process of advance care planning and the resultant advance directive serve a range of important goals in recovery-oriented, human rights-based care, and do so before acute circumstances raise difficult questions about decision-making capacity, will and preferences, and whether coercive interventions are justifiable. Speaking for a moment to acute circumstances, however, research does suggest that advance directives with instructions for mental health care may contribute to reduced likelihood of experiencing coercive interventions5. Advance directives, despite their intuitive appeal and relevance to recovery-oriented, person-centered care, continue to be underutilized. Several factors likely contribute, including misunderstandings about administrative requirements, difficulty in sharing copies across providers, provider misapprehensions about restrictive instructions and refusals, and others6, 7. The idea has endured, however, and improvements in how advance planning is conceptualized (e.g., as more than a form to fill out, but rather a process of exploring and documenting values and preferences) and supported (e.g., facilitators to assist individuals) are helping to realize how this planning, if normative, could enhance public mental health. Rather than circumscribing consideration to only instances in which a decision must be made and an indication of the person's will or preference is sought, the larger process of advance care planning as a regular part of health care serves the prevention and promotion aims of public mental health. A meaningful integration of advance care planning into standard practice, so that it becomes a common point of discussion, and robust resources are available and accessible, would significantly contribute to the culture shift called for by Galderisi et al. Psychiatrists may rarely be the professionals able to set aside sufficient time to be primary facilitators of advance care planning. Nonetheless, they can and should find ways to support the expansion of this planning. Informing the people they serve about advance care planning opportunities and tools, and encouraging clients’ interest in such topics, will be impactful. One factor contributing to the slow uptake of advance directives is that some individuals doubt that providers will honor, or even seek out, their advance care planning documents. Psychiatrists can build and maintain trust (incidentally, a public health moral consideration) by validating the worth of undertaking advance care planning to the persons they serve, thus communicating a commitment to recovery-oriented care and respect for persons’ autonomy. In addition to supporting persons they serve, psychiatrists can also further advance care planning in everyday practice by supporting efforts by colleagues in their institutions who are championing the integration of this planning. In sum, advance care planning and advance directives are practices that enshrine positive rights and the exercise of persons’ autonomy, rather than just “protecting” negative rights of individuals by restricting a State's detention power. That being said, policy establishing and supporting advance care planning has the potential to reify stereotypes about legal capacity and discriminatory practices. The potential of advance directives in the mental health field has long been recognized8, but, for the last several decades, discussion and legislation have tended to segregate planning for mental health care. While terms such as “psychiatric advance directives” were understandably in line with the generally segregated approach to mental health care, and may have been helpful for making their applicability to mental illnesses explicit, the time has come to de-emphasize the distinction. Enabling legislation that presents advance directives for mental health as separate from existing law about advance care planning reifies a distinction that contemporary conceptualizations of “whole health” have moved past. Policies that require more steps – such as evaluation by a physician to document capacity – for mental health advance care documents are instances of discriminatory mental health law. Concerns are similarly raised by differential policies and criteria for overriding advance directives that are predicated upon a presumed categorical difference between “medical” and “psychiatric” advance directives. Less obvious ways by which discriminatory use of advance directives for mental health may arise include a paucity of training and understanding about what decision-making capacity entails and how to assess it7. Relatedly, defensive practices may lead providers to inadvertently and even purposely delay or avoid obtaining and reviewing an advance directive for a person with mental illness out of concern that it will contain impractical and restrictive instructions (a scenario that research suggests is in fact quite rare9). Advance care planning could be transformational if the process as well as the products and their application receive equal emphasis, if they are widely and consistently integrated into health care systems without discrimination, and if providers “embrace the human rights framework and champion the promotion of mental health and prevention of mental disorders”1. Advance care planning and advance directives are archetypal of a recovery-oriented, human rights-based approach to mental health care, and we should capitalize on all they have to offer.