Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities
Psychiatric Advanced Directives: The TRLA Model
People with mental illness have too often been prevented from being full and equal participants in their communities (e.g., Wood, 2005). They have been physically separated by institutionalization, socially separated through the stigma of unfounded beliefs that they are “dangerous” or “unable to take care of themselves,” and legally separated through guardianship (e.g. Kapp, 1999).
With the passage of the Americans with Disabilities Act (ADA) in 1990, people with disabilities were finally guaranteed the “right to fully participate in all aspects of society” (42 U.S.C. § 12101). The ADA’s “integration mandate” (28 C.F.R. § 35.130(d)) sets forth governments’ obligation to provide supports and services to people with disabilities in integrated, community-based settings. As interpreted by the Supreme Court in the landmark Olmstead case (527 U.S. 581 (1999)), the mandate aims to end centuries of U.S. government approved and assisted segregation, whether in state-run institutions or state-sponsored programs. Yet, two decades after Olmstead, far too many people with mental illness are not integrated into their communities and cycle through hospitalization, criminal justice involvement, and homelessness.
Texas Rio Grande Legal Aid (TRLA) represents people with serious mental illness (SMI) to protect their right to receive the supports and services they need to be self-determined and fully included in their communities. In one of TRLA’s many programs, it uses Supported Decision-Making (SDM), through individual client representation and public workshops, to empower people with SMI to create Psychiatric Advance Directives (PADs) (Stoeltje, 2019; Belluck, 2018).
Through Psychiatric Advanced Directives people with serious mental illness provide law enforcement, medical, and crisis personnel with information critical to de-escalation and treatment.
In PADs, people with SMI use SDM to identify and state their preferences for treatment, communication, and anything else that will help them (or responders) in a crisis situation. PADs may contain information as simple as medications or treatment modalities that have or have not worked, or as complex as specific steps that should be taken if they are in crisis. The PADs are then provided to law enforcement, crisis responders, medical personnel, and others as appropriate so they are aware of the person’s preferences.
PADs can inform responders and medical personnel that a person reacts poorly to Haldol or well to Zyprexa; has an attorney or supporter who should be contacted as soon as possible; is a veteran who needs to be reminded she is not in Afghanistan or a survivor of sexual assault who should be approached by a woman; is helped by eye contact, which facilitates communication, or threatened by it, which causes a defensive response.
Thus, through PADs, people with SMI provide law enforcement, medical, and crisis personnel with information critical to de-escalation and treatment. This helps crisis personnel respond in a positive way consistent with the person’s preferences and experiences, reducing the likelihood that interactions will result in criminal charges or long-term, involuntary hospitalization. In addition, non-violent crisis engagement may encourage people with mental illness to view law enforcement and medical personnel as a helpful resource.
PADs also enable people with mental illness to provide treating physicians with critical information in writing, in advance, that they may not be able to communicate at the time of hospitalization. Consequently, PADs may improve medical care by reducing “coercive crisis intervention,” facilitating doctor/patient communication and relationship development (Swanson, et al., 2010).
The following are examples of two TRLA clients, with names altered to protect their privacy, who have used PADs to protect their rights and improve their health care and community interactions:
Bobby has had many interactions with police, which almost always ended in arrest. Typically, police approached Bobby in the same way – with well-armed, shouting officers charging at him from all directions. When Bobby did not immediately obey or reacted defensively, the police would pepper spray, tase, and arrest him. TRLA represented Bobby, using SDM to create a PAD that included a section informing law enforcement personnel of the best way to approach him and providing it to the police department. The next time the police encountered Bobby, they used his preferred method of engagement and, for the first time, he accompanied them peacefully, avoiding additional criminal charges.
James is a veteran with PTSD who has been involuntarily hospitalized and forcibly medicated on a number of occasions. TRLA represented James, using SDM to create a PAD. In his PAD, James listed the symptoms and actions that indicate he is in psychosis and techniques he finds helpful. When James was hospitalized during a mental health crisis, TRLA provided the PAD to his treatment team. Upon reviewing the PAD, a psychiatric nurse recognized the listed behaviors. She then provided James with the de-escalation techniques identified in his PAD, resulting in a better outcome for him.
In the TRLA model, people with SMI exercise self-determination and SDM throughout the development and implementation of their PADs, creating a sustainable process for life and treatment decisions. As a result, as the experiences of Bobby, James, and other TRLA clients show, PADs empower people with SMI to direct their medical care and community interactions, bringing them ever closer to inclusion “in all aspects of society.”
Belluck, P. (2018). Now mental health patients can specify their care before hallucinations or voices overwhelm them. New York Times. Retrieved from https://www.nytimes.com/2018/12/03/health/psychiatric-advanced-directives.html
Berg, S. (2017). Better communication with patients linked to less burnout. American Medical Association. Retrieved from https://www.ama-assn.org/practice-management/physician-health/better-communication-patients-linked-less-burnout
Kapp, M. (1999). Geriatrics and the law: Understanding patient rights and professional responsibilities. New York: Springer Publishing.
Olmstead v. L.C., ex rel. Zimring, 527 U.S. 581. (1999).
Stoeltje, M. F. (2019). People with mental illness can get a say in their own treatment. San Antonio Express-News. Retrieved from https://www.expressnews.com/news/local/article/People-with-mental-illness-can-get-a-say-in-their-13747403.php
Swanson, J. W., Swartz, M. S., Elbogen, E. B., Van Dorn, R. A., Wagner, H. R., Moser, L. A., … & Gilbert, A. R. (2008). Psychiatric advance directives and reduction of coercive crisis interventions. Journal of Mental Health, 17(3), 255–267.
Wood, E. (2005). History of guardianship. In M. J. Quin (Ed.), Guardianship of adults: Achieving justice, autonomy, and safety. New York: Springer Publishing Company.