I am no bird; and no net ensnares me: I am a free human being with an independent will. Charlotte Brontë, Jane Eyre
Of all patients treated by psychiatrists, those with serious and chronic mental illness, such as schizophrenia, are the most vulnerable to resisting engagement in treatment and most in need of a trusting, therapeutic alliance to maintain treatment adherence and learn illness self-management skills. Two notable stereotypes stigmatize individuals with mental health and substance use disorders, negatively impacting their ability to optimally take part in their treatment: 1) assumptions that individuals with mental health and substance abuse disorders are incapable of participating productively in decisions about their treatment, and 2) beliefs that these individuals very frequently pose a serious danger to themselves or others, when data suggests that only about 3% of those with mental illness have that history (1). Mental health treaters often hold similar biases regarding the potential dangerousness of individuals with psychiatric disorders, and this bias may be intensified by legal mandates concerning duty to protect society (2). Individuals with chronic and serious psychiatric disorders are at higher risk of receiving more coercive types of treatment, to demonstrate less engagement in their treatment planning, and overall have a poorer sense of control over recovery efforts than patients with other medical disorders (3, 4).
In 2006, the Institute of Medicine published a monograph in the Quality Chasm Series entitled Improving the Quality of Health Care for Mental and Substance-use Conditions, designed to explicate a model of mental health care that promotes patient-centered care and optimizes patient participation in their recovery and health maintenance. One of the recommendations proposed was for the use of psychiatric advance directives, whereby patients and their significant others make their treatment preferences known when they are most healthy so that decisions may be optimally patient-centered in the event that the patient’s acute psychiatric crisis impairs decision-making (3).
“So, what did you learn last night in the Psychiatric Emergency Department?” his attending psychiatrist, Dr. Jones, inquired as the resident prepared to round on the patients seen the night before. “I saw a patient that you took care of on the inpatient service!” the resident blurted out, in the excitement of sharing his revelation. “Oh?” Dr. Jones inquired, pensively. “Yes, it was Ms. Syed.” “Ah yes, she has been here many times. Did she stop taking her medication?” “Well, yes,” the resident stammered. “As I thought. Please proceed with the case presentation,” Dr. Jones urged.
“Ms. Syed is a 33-year-old widowed Islamic woman who immigrated to the US in 1999 from a Middle Eastern country with her family of origin following the death of her husband and brother. She had her first hospitalization for psychotic disorder in December of 2001, following the 9/11 attacks. Since then, she has had multiple hospitalizations for paranoia, persecutory delusions, and auditory hallucinations when she does not take her medications. She has a history of becoming very agitated and aggressive, and has needed to be restrained and to receive IM medication in the ER on all prior admissions. The police brought her to the ER last night because she was walking the streets, talking to herself, and accusing passersby of being CIA agents attempting to take her away to torture her.
I looked in the electronic medical record and found the Advanced Directives that you made with her in the inpatient unit when she was there 5 months ago. At first I thought she must have a life-threatening disease, but then I saw that they were psychiatric advance directives. I had never even heard of that before. Here’s what it says, “I, Ms. Syed, being of sound mind and body, request the following, if my mental illness renders me not competent to make good decisions. 1. Please don’t restrain me. Give me space and have a woman present; 2. Call my sister, whom I give permission to make medical decisions for me; 3. Please don’t touch my head scarf. Only my sister or another Muslim woman should do that; 4. Please have only a woman do a physical exam, if it must be done; 5. I get dystonia with IM medication. Give me 24 hours to agree to take medications by myself. If I have to get medications IM, give Benadryl with it; 6. If I get paranoid about the medication, remind me that I have schizophrenia and need this medication to feel less afraid. It helps to have my sister or a woman from our mosque tell me this, too.’ She signed it, and you signed it, and her sister and a nurse.”
“So, did you follow the directives?” queried Dr. Jones. “Well, yes. It’s legally binding, right? The security guards in the ER were really concerned, because Ms. Syed had been very violent last time. But we followed it. We got a woman security guard and a female nurse, and the male guards stayed right outside. At first she was really agitated—cursing, paranoid, and she kept repeating, ‘Extreme rendition—that’s what you’re planning.’ We gave her space, and then reviewed with her the advance directives she had done. She calmed down quite a bit, and was able to walk safely to the inpatient unit with her sister and an escort. I have to admit, I was skeptical, but that advanced directive plan really worked!” the resident proclaimed in the tones of awe of someone who has just witnessed a near miracle. “Amazing…” Dr. Jones mused, as he grinned sheepishly. “I had just gone to a presentation on patient-centered care and thought we should at least try this. To be honest, I didn’t believe it would work, either.”
The use of psychiatric advance directives is one strategy to optimize treatment engagement of patients with serious mental illness. Advance directives for mental health care, as with advance directives used in general health care, are intended to increase medical professionals’ adherence to the wishes of the patient during times when their decision-making capacity or ability to communicate their preferences may be compromised. Psychiatric advance directives (PADs) are relatively new legal instruments which may be used to document a competent person’s specific instructions or preferences regarding future mental health treatment, in preparation for the possibility that the person may lose the capacity to give or withhold informed consent to treatment during acute episodes of psychiatric illness. Although statutes vary, all states permit some form of legal advance directive (AD) for healthcare (5). Psychiatric instructional directives typically address such issues as preferred medications, treatments, service providers and locations, and who is to be notified about hospitalizations and allowed to visit. Psychiatric proxy directives allow the patient to designate a surrogate decision-maker that has the authority to act in accordance with an incapacitated patient’s previously-expressed wishes, known values, or to act in the patient’s best interest if the patient’s preferences are unknown (6, 7). Although many states allow patients to revoke their advance directives, even if they are considered incompetent at the time, twenty-five states have adopted specific PAD statutes for psychiatric patients who may experience fluctuating capacity to make informed treatment decisions due to mental illness (5).
A number of approaches to preparing mental health advance directives have been developed, including completion of paper-and-pencil checklists, use of templates available on the Internet, and use of an interactive CD-ROM on a computer. Perhaps the most accessible information on how to help patients implement psychiatric advance directives may be on the National Resource Center on Psychiatric Advance Directives website, which provides tool kits and user-friendly instructions for consumers, clinicians, and family members to use in completing psychiatric advance directives (5).
Several evaluation studies have found psychiatric advance directives to be feasible for use (with support) by individuals with severe and chronic mental illnesses. The use of such directives is also perceived positively by consumers and has been associated with decreased feelings of coercion, increased perception of having a choice in their treatment decisions, and improvement in treatment alliance with professionals in times of diminished medical decision-making capacity (7, 8).
Individuals suffering from serious and chronic psychiatric illness are often among those most ill-equipped for self-advocacy and optimizing therapeutic supports for recovery. They require the assistance of the therapeutic community of providers to aid in this endeavor. Physicians in treatment teams must strive to promote as much self-determination as the psychiatrically ill individual is able to manage. Providing education about the illness, involving patients and their significant others in treatment decisions and planning, and encouraging the use of Psychiatric Advance Directives for patients with serious and recurrent exacerbations of their illness, may open up communication about life aspirations and help maintain the therapeutic alliance, even when the patient is not competent due to acute psychiatric crisis.