An electronic newsletter of the Coalition's Center for Rehabilitation and Recovery
The Center for Rehabilitation and Recovery provides assistance to the New York City mental health provider community through expert trainings, focused technical assistance, evaluation, information dissemination and special projects.
Debra Srebnik, PhD
After many years of hospitalizations and treatment she disliked and resisted, Brenda made a psychiatric advance directive (PAD) to increase her voice in treatment decisions. The PAD provided information about preferred medications, crisis reduction methods, and contact information for additional people to support her during a crisis. After a subsequent hospitalization, she reported, “The PAD was extremely helpful for getting the right treatment, coordinating my care, and getting what I needed. I felt people listened to me. I had more control over the situation, and I was being heard.”
PADs are documents created by individuals with mental illnesses to specify treatment preferences in advance of severe symptoms that can reduce the ability to make treatment decisions. A surrogate decision-maker may also be appointed in a PAD. Participants in mental health treatment and treatment providers both report benefits of completing and using PADs that are consistent with recovery, including increased client choice and autonomy, increased treatment involvement and dialogue, and improved crisis treatment.
Increasing choice and autonomy
PADs increase choice and include the voice of individuals with mental illness when they are otherwise least likely to meaningfully participate in treatment decisions. Creation and use of PADs can be an important part of the recovery process by providing the opportunity to increase self-determination, control, and empowerment. The very act of completing a PAD, even before it is used in a crisis, helps people feel more in control, and less likely to be coerced.
Promoting treatment involvement and dialogue
Ideally, PADs are created in collaboration with clinicians. Considering recipients of treatment as full partners in treatment planning can improve the treatment alliance, and show clinicians that persons with serious mental illnesses are fully capable of making thoughtful treatment decisions.
For some people, family or friends also participate in treatment decisions. Involvement of family members or friends in the development of PADs, or as surrogate decision-makers appointed in a PAD, can help create the social support system that could decrease the chance of relapse. Surrogate decision-makers report that PADs can help them advocate for their loved one’s treatment needs and prevent hospitalization.
Improving crisis mental health treatment
PADs provide information that can be very useful during psychiatric crises, such as ways to calm down and de-escalate, treatments that have worked in the past, and medication allergies and side effects. PADs can also help identify alternatives to hospitalization so that hospitalization and court involvement can be avoided. One person recalled a dissociative episode in which he found himself wandering the streets. He went to the police for help and reported that, “When they looked at the PAD card they knew exactly what to do.” If hospitalization does occur, PAD information can help guide decisions about medications, seclusion and restraint, and persons to notify of hospitalization.
When clinicians are aware of PADs during mental health crises, PAD instructions are typically used and honored. However, crisis and hospital staff do not always know that someone has a PAD. Further, many people receiving mental health services have not had the opportunity to complete a PAD. Adoption of PADs has been most successful in mental health systems that have embraced the values of recovery, such as client autonomy, choice, and illness self-management. When these values fully infuse a system of care, the potential benefits of PADs may be realized.
Dr. Srebnik is Associate Professor, Department of Psychiatry and Behavioral Sciences, University of Washington.
The National Resource Center on Advance Directives (www.nrc-pad.org) has a treasury of articles, FAQs, and webcasts for clients, family members, providers, and researchers. Resources range from summaries of the federal law on advance directives to news about advance directives in different states. One 15-minute webcast demonstrates how a counselor and client can fill out an advance directive so that the former can be sure the latter understands her options, and can include information that might be relevant in an emergency (for example, what triggers crises; how staff can best help when the client is suicidal, or out of control; what acts as a wellness factor; whom hospital staff should notify).
Everyone is nervous about the coming transition to Medicaid managed care – particularly clubhouses and psychosocial clubs, which traditionally have shied away from extensive treatment planning and documentation. As a community, these programs are concerned: How will goal-setting and progress notes affect their culture? Will their egalitarian, recovery-centric environment be compromised?
To help reduce the anxieties of New York City club program staff and members, the Coalition’s Center for Rehabilitation and Recovery used Skype video conferencing to convene a unique conversation between the New York City club community and a clubhouse in Pittsburgh, Pennsylvania. A goal of the discussion was to dispel the myth that documentation is a necessary evil, and instead focus on its potential as a recovery tool.
The Pittsburgh team included a Clubhouse member, a staff person, and two senior managers from the Howard Levin Clubhouse of Jewish Residential Services. Pennsylvania moved to Medicaid managed care more than ten years ago, so the team was able to speak thoughtfully about its experience. The New York City side had members and staff from nine clubhouses and nine psychosocial clubs.
The Pittsburgh clubhouse member eloquently explained that creating goals and reviewing her progress with staff helped her stay focused on her hopes and dreams. Progress reviews also created a valuable partnership with staff. Another Pittsburgh speaker - a staff member - commented that from her perspective, goal planning produced a stronger, more productive relationship with members. The senior managers spoke directly to the New York City clubhouse and psychosocial club leaders, encouraging them to put the necessary systems in place now, to ease the transition later.
This was all good news to the New York City participants, who said they enjoyed hearing from the Pittsburgh team. After the conversation, the New Yorkers said they felt reassured and optimistic that documentation could actually boost the impact of the program, as well as deepen the relationship between staff and members. Hearing directly about the value of documentation within the walls of the clubhouse from both a member and a staff person, rather than a third party, made the information more credible, and the process seem less overwhelming.
The response to this conversation was so positive that the New York City clubhouses and psychosocial clubs requested that the Pittsburgh team have program-specific Skype sessions with their staff and members, so more people could benefit from their insight.
This two-state conversation is part of a larger training and technical assistance program mounted by the Center with funding from the New York City Department of Health and Mental Hygiene. The program is helping club programs - clubhouses and psychosocial clubs - transition more smoothly into a Medicaid managed care environment.
The opinions expressed in RECOVERe-works do not necessarily reflect the views of the Coalition of Behavioral Health Agencies.
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