Get It in Writing — Psychiatric Advance Directives
By Lynn K. Jones, DSW
Social Work Today
Vol. 7 No. 2 P. 20

A relatively new document may make a big difference in the quality of care your client receives in a mental health crisis.

“I was inpatient more than I was outpatient,” says 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,” she says. Blake has spent many of the past 30 years, often years at a time, in psychiatric hospitals and community placements and has experienced firsthand nearly every mental health intervention. What helped turn her situation around, she believes, is her psychiatric advance directive (PAD).

PADs, like health advance 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 PADs has been around since 1991, when the Patient Self-Determination Act passed new requirements for healthcare facilities to implement advance directives. Since then, 25 states have passed legislation authorizing advance directives specifically for psychiatric patients.

Despite the increasing interest and support of PADs across 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,” says Jeffrey W. Swanson, PhD, associate professor in the 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 Advance Instruction for Mental Health Treatment Act.

Developing PADs
Ideally, developing a PAD is a process that encourages reflection and dialogue, explains Anna M. Scheyett, MSW, clinical associate professor at the 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.”

Scheyett 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.”

Don’t rush the process of developing a PAD, cautions Scheyett. “It is hard to think about what your life was like when you were in crisis, and that takes time,” she says.

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 [for] a PAD. The PAD should be carefully thought out and should allow for much deeper conversation.”

Blake advises that social workers who are helping people develop a PAD should ask them to talk to many different people regarding it. “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 issues, such as what medication she would prefer and how seclusion and restraint should be handled.

Blake says:“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 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 toward 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.” The 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, MD, professor and head of the division of social and community psychiatry at the Duke University School of Medicine, and Jeffrey W. Swanson, PhD, became convinced that PADs are an important innovation in reducing coercive treatment for people with severe mental illness. They began studying the experiences of people who had used a PAD in crisis. Because clinicians often fear a person with a severe mental health condition will 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 want in their PADs.)

Swanson says one request that comes up in most people’s PADs is that they want to be treated with respect. “I think it is a commentary [on society] 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 advance directives that are feasible and consistent with community practice.

The PADs Experience
What do the stories of those who have used PADs tell? According to Swanson, some 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 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!” The man believed his experience showed PADs are necessary, but "we just need to work on getting the system to follow what they say." Swanson believes that if everything goes wrong that can go wrong and it is still the best thing 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 PAD works just the way it should, however. When one participant in Swanson’s study was admitted to the hospital, she said, “The doctor didn’t treat me like a nut case, because some do. 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 précis 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 and to be designated to be able to do so. 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 advance directives and PADs—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. “[Hurricane] 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 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 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% to 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 place 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. Scheyett says that in addition, social workers can play an important role in the education of providers about PADs, advocating not only for access to PADs for all individuals with mental health conditions but also ensuring 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.”

— Lynn K. Jones, DSW, is a freelance writer and an executive coach and organizational consultant in Santa Barbara, CA. As a specialist in organizational culture, she supports leaders and organizations in developing mission-driven cultures.

What Consumers Want in their PADs
Marvin Swartz, MD, professor and head of the division of social and community psychiatry at the Duke University School of Medicine, and Jeffrey W. Swanson, PhD, studied what people want 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 of the 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 electroconvulsive therapy in any circumstance; 16% listed additional medical conditions they wanted providers to be aware of, such as diabetes, hyperthyroidism, and hypertension; 28% documented medication or food allergies.

It is important to note that some states preclude disallowing certain treatments in advance. Also, 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
Bazelon Center for Mental Health Law has developed templates for psychiatric advance directives (PADs) that can be downloaded and used as a starting point for developing a PAD.

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 (along with links to information about the legislation and development in various states): www.nrc-pad.org

Other organizations that can provide helpful information about PADs are:

The Advocacy Center for Persons with Disabilities, Inc.

Disability Rights Center

National Alliance on Mental Illness

National Mental Health Association

— LKJ