“I was inpatient more than I was outpatient,” explains Mary Blake. “I was a frequent flyer.” It has been a long journey to recovery since high school, when Blake had her first psychotic break. She has been diagnosed with both Bipolar disorder and Schizophrenia, “but I think that Schizophrenia is the one that stuck.”
Blake has spent many of the past thirty years, often years at a time, in psychiatric hospitals and community placements and has experienced first-hand nearly every mental health intervention. What helped turn her situation around, she believes, is her Psychiatric Advanced Directive, her PAD. Psychiatric Advanced Directives, like Health Advanced Directives, provide persons with mental health conditions the opportunity to determine in advance the treatments they would choose, should they become incapacitated. The PAD is a witnessed legal document and may include information about a healthcare power of attorney-a trusted person who will make decisions and speak for the consumer when necessary.
Federal legislation supporting Psychiatric Advanced Directives (PADs) has been around since 1991, when the Patient Self-Determination Act passed new requirements for healthcare facilities to implement advance directives. Since that time, 25 states have passed legislation that authorizes advanced directives specifically for psychiatric patients. Despite the increasing interest and support of PADs around the country, many social workers don’t know anything about them and how they can be used to support the recovery of people with severe mental health conditions.
A recent survey of mental health professionals in North Carolina found that two thirds of social workers lacked familiarity with PADs. “We found that clinicians are mostly supportive of PADs, once they’re aware of them, but they’ve had very little experience with them,” said, Jeff Swanson, Ph.D., Associate Professor, Department of Psychiatry and Behavioral Sciences at Duke University School of Medicine. In North Carolina, PADs have been in effect since 1997, when the state legislature passed the Advanced Instructions for Mental Health Treatment Act.
Developing Psychiatric Advanced Directives
Ideally, developing a PAD is a process that encourages reflection and dialogue, explains Anna M. Schyett, MSW, Clinical Associate Professor, School of Social Work, University of North Carolina at Chapel Hill. “It is not a one-shot deal.” For Blake it was this dialogue that helped her turn the corner. “It was revolutionary for me, when my psychiatrist first asked me to think about making decisions for myself. It was a painful process-I had never experienced that before and I didn’t think that I was capable of making decisions about my treatment. But it was very helpful in breaking my institutional mindset and it also gave me some hope.” Schyett suggests that a challenge for social workers is facilitating this kind of discussion without becoming prescriptive.
Exploring what does and doesn’t work and what will be helpful in a crisis, without telling the person with a mental health condition “what they ought to include in their PAD” can be difficult. “I think the beauty of the PAD, if it is done well, is that it allows for deeper conversations between the social worker and the consumer about what is really going on,” explains Blake. “So, for example, when the consumer says, ‘I reject Haldol; I don’t want Haldol under any circumstance,’ even though the social worker may have the viewpoint, ‘It is the Haldol that keeps you calm,’ the conversation doesn’t end there. It allows for more meaningful conversation, because the consumer has the right to say why they don’t like Haldol.
It is a structured way for the consumer to explain what may be very difficult to explain. And it may not be in one conversation-it may be many conversations over six months.” It is important not to rush the process of developing a PAD, cautions Schyett. “It is hard to think about your life when you were in crisis and that takes time.” Blake explains, “If we have a hard time articulating our experience and what helps, it doesn’t mean that we aren’t able to. It just means that we need to find a way to do that. There is no timetable to a PAD. The PAD should be carefully thought out and should allow for much deeper conversation.” Blake advises that social workers helping people to develop a PAD ask them to talk to many different people about their PAD. “Different people will help you to see things in a different way. Or they may help you to articulate what you weren’t able to in a clinical setting.” Blake’s PAD has evolved over the years.
Her early PADs focused on helping her caregivers identify the symptoms that would necessitate hospitalization. “The idea was for me to be hospitalized before I was too far gone because it took so long for me to rebound from that. Every down cycle required a longer period to bounce back.” Breaking this downward spiral was the beginning of Blake’s recovery. As Blake’s PAD developed, it also addressed such issues as what medication she would prefer, and how seclusion and restraint should be handled. “What was really remarkable was when the PAD started to become a recovery plan and I was able to learn coping strategies that the hospital never taught me.
The PAD was a legal document set up for me as a last resort to help me gain more control. But as a clinical document it was able to stop me from going into a full-blown psychotic episode. I compare it to the experience of a brittle diabetic: when your blood sugar goes up and down, up and down, that is when your organs really start to pay a price. My experience with my psychosis was that when I could even out the severity of my episodes, I could work out coping strategies for myself; that is very hard to do when you are sick.” Schyett says that her adrenaline gets going when she talks about PADs.
“What is exciting is that the process and the conversations that result are, in and of themselves, very positive, and can really help people move towards recovery. The dialogue builds a stronger therapeutic alliance with the social worker. You are honoring the person’s lived experience and that is empowering. It also starts building greater trust.” Bottom line: “More engagement, better trust, more effective social work.” Blake agrees. “The real empowerment work was with me. I needed all the various tools and supports to help me to figure it out the best that I could. The PAD as a tool was just unbelievable. It is the whole idea of self-directed care. If I hadn’t had the PAD, I would still be institutionalized-I am convinced of it.”
PADs: Roadmaps to Recovery
Marvin Swartz, M.D., Professor and Head, Division of Social and Community Psychiatry at the Duke University School of Medicine and Swanson, became convinced that PADs are an important innovation in reducing coercive treatment for people with severe mental illness. He began studying the experiences of people who had used a PAD in crises. Because clinicians often fear that a person with a severe mental health condition would use the PAD as a way to refuse all treatment or to demand unreasonable interventions, “like Ginkgo for psychotic episodes,” Swartz studied what people actually wrote in their PADs.
Were the clinician’s fears founded? “No,” says Swartz. “Generally, consumers included a mix of what they wanted or didn’t want. Nobody refused all treatment and all medication. (See sidebar for what consumers wanted in their PADs.) Swanson says that one thing that comes up a lot in people’s PADs is that people want to be treated with respect. “I think it is a commentary that people think that they need a legal document to be treated with respect, but people do put that in a lot.” Swartz suggests that engaging in the process of developing a PAD with a clinician, such as a social worker, helps a person with a severe mental health condition write advanced directives that are feasible and consistent with community practice.
The PADs Experience
What do the stories of those that have used PADs tell? According to Swanson, some of the stories have been hopeful and some are cautionary tales about what can go wrong. In one case, everything that could go wrong did, and nothing in the PAD was followed. It was such a disaster that Swanson assumed that the person would say that his PAD “wasn’t worth the paper that it is written on,” on the contrary, he said, “this is the best thing that I have ever done!” Swanson believes that if everything goes wrong that can go wrong and it is still the best thing that a person has done for himself, then that is compelling evidence. “Now this man keeps his PAD in the visor of his car so he can take it everywhere he goes. I think that story shows the problems and also what these documents mean.
PADs take on a symbolic as well as a real role in people’s lives, especially people who have felt disempowered and helpless.” Sometimes the PADs works just the way it was supposed to, however. When one of the participants in Swanson’s study was admitted to the hospital, “the doctor didn’t treat me like a nut case, because some do.” She said, “Do you know what the doctor said to me? He said, ‘You’ve got rights and it is great that you know that you have them.’ That’s what he said to me! And he said, ‘Now you know your rights and we’ll try to respect those completely.’ That’s the purpose of the PAD.
Facilitating Effective Treatment
One benefit of developing a PAD is that it collects important information critical to a person’s mental health treatment into one document. In a fragmented mental health system where many consumers have a tendency to be transient, “it creates a prcis of someone’s clinical history and treatment record,” says Swartz. “That is just enormously helpful in a person’s treatment-it helps the provider get a better fix on what is going on, what has worked and what the diagnosis is.” Another benefit is that it allows, through the healthcare power of attorney, family members and others to share important information. Without the PAD, issues of confidentiality obstruct communication. “If you include in your PAD a healthcare power of attorney, then as soon as you are in crisis for incapacity, a family member or other designated person can be fully informed of the situation, make decisions, and share important information that might not be otherwise known. All of a sudden, this veil of secrecy around treatment is lifted,” says Swartz. PADs can usually be kept anywhere the consumer chooses.
Some states have electronic vaults, essentially an electronic directory for both health and psychiatric advanced directives, where a PAD can be securely filed and accessed 24 hours a day from anywhere. For states that don’t have electronic vaults, the national organization, the United States Living Will Registry, is an option. “Katrina illustrated the problem of having fixed records in one place,” says Swartz. Perhaps the most important benefit is that the PAD can be regularly revisited so that it accurately reflects the consumer’s wishes. Blake says, “As we change and grow in our knowledge of ourselves, our recovery and support systems, our specific instructions may evolve. In this way, the PAD is a useful tool for assessing people’s movement in self-direction and recovery.”
Role for Social Workers
For Blake, even though her days of being a “frequent flyer” seem to be over, she still has a PAD. She is a firm believer. As the Director of Training and Communications of the Consumer Action Network (CAN) in Washington DC., she is trying to help professionals and consumers learn about the value of PADs. “We use the concept of the PAD in everything we do.” According to Swartz and Swanson’s research, two thirds of the people studied said that, if given help, they would develop a PAD. But only 3-5% of people with severe mental health conditions actually have PADs. This gap between the demand for PADs and the existence of them suggests an important role for social workers to step in and help people with severe mental health conditions write PADs, which may well change the course of their lives. Schyett says that in addition, social workers can play an important role in the education of providers about PADs, and advocate for not only the access to PADs for all individuals with mental health conditions, but also that PADs are honored when they are used. “My family was told that I was custodial.” says Blake. “It has been slow-It has not been, ‘Whee… now I’m cured!’ But I have done very well. And I know my PAD was a very big part of how well I have done.”
Sidebars What Consumers Want in their PADs
Swartz and Swanson studied what people wanted in their PADs. Everyone they studied listed at least one risk factor for relapse and 20% provided detailed descriptions of what they looked like when they are decompensating; 94% gave advanced consent to treatment with at least one psychotropic medication; 77% refused some medication and the vast majority of those (76%) gave reasons for their refusal-mostly side effects to a medication.
No participant refused all treatment and all medication; 88% gave advanced consent to hospitalization in at least one facility; 62% documented advanced refusal of admission to a particular hospital; 52% wrote instructions to staff on ways to reduce or avoid the reliance on seclusion and restraint; 62% refused ECT in any circumstance; 16% listed additional medical conditions that they wanted providers to be aware of, such as diabetes, hyperthyroidism, hypertension; 28% documented medication or food allergies. It is important to note that some states preclude disallowing certain treatments in advance. Also, even if a specific directive is written in a PAD and it is not feasible in the situation, the healthcare facility does not have to follow it. –LKJ
Resources for Developing PADs
The National Resource Center on Psychiatric Advance Directives is an online resource available for patients, families and clinicians to learn about PADS and obtain up-to-date information on PADs. Also available at this website are links to information about the legislation and development in various states. Bazelon Center for Mental Health Law http://www.bazelon.org/issues/advanceddirectives/index.htm The Bazelon Center has developed templates for PADs that can be downloaded and used as a starting point for developing a PAD. Other organizations that can provide helpful information about Psychiatric Advanced Directive are: National Mental Health Association National Alliance for the Mentally Ill Disability Rights Center and the Advocacy Center for Persons with Disabilities
Author: Dr. Lynn K. Jones
Certified Personal and Executive Coach
Dr. Lynn K. Jones is a Certified Personal and Executive Coach based in Santa Barbara, California and a sought after coach and consultant for organizations and individuals across the US. Her doctoral work completed at the Wurzweiler School of Social Work, Yeshiva University concerned organizational culture; she coaches, consults and trains organizations on what they need to do to create organizational cultures that are aligned with their vision and values using a process of Appreciative Inquiry. She coaches individual on achieving their reflected best selves. An MSW@USC faculty member, Dr. Lynn K. Jones, MSW, DSW, CSWM, teaches Human Behavior and Social Environment.