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Advance Directives - use an advance directive as a crisis plan and as part of WRAP.

Click here for More info and tool-kits for setting up an advance directive.

Psychiatric Documents Can Aid Mentally Ill in Crises

BY BRUCE TAYLOR SEEMAN Newhouse News Service

People with psychiatric problems who struggle daily to maintain their footing are relying on an increasingly popular document to protect them if they falter: a page or two of written instructions that spell out their care.

Some documents list medications to be given. Others identify which doctor to call, whether electric shock therapy may be used, or what kind of music works best to soothe a patient's distress.

The documents, called "psychiatric advance directives" (PADs), are similar to living wills: Both aim to honor people's autonomy by carrying their voices forward if they become too sick to speak for themselves.

No national estimate exists on how many people have chosen the tool, and doubts persist among skeptics who see risks in giving patients a forceful voice regarding their treatment in psychiatric emergencies.

But people like Kathy Cleary, 44, a former nurse diagnosed with borderline personality disorder and depression, say a greater voice in treatment is precisely why the documents make sense.

During a difficult episode, Cleary used her PAD to block an attempt by jittery hospital workers to put her in leather restraints. Such a step would only have escalated her agitation, she says.

"I was arguing with them," remembers Cleary, of East Hartford, Conn. "I had the document in my hands. They said, `We've never heard of this.' They said they wanted to call their lawyer. And their lawyer said, `We're not sure this is perfectly legal, but until we find out differently, we better do as it says."'

About 9 million Americans struggle with serious mental illnesses such as bipolar disorder, schizophrenia or clinical depression. Many experience repeated episodes of instability. When healthy, however, most are competent to outline their desired care, especially with professional help, mental health advocates say.

Some of the documents are written under state laws on living wills that allow people to formalize choices for end-of-life medical care. Some states -- Ohio recently became the 19th -- have enacted laws that specifically outline procedures for establishing an advance directive for mental health care.

The first large-scale study of PADs is under way with a $2 million grant from the National Institute of Mental Health. Led by a team of Duke University researchers, the four-year project will follow 500 people to see whether providing help motivates people to complete PADs, and how well the documents work with doctors and hospitals.

Mary Ellen Mixon, 56, would like to establish a PAD that outlines important features of her illness. She is claustrophobic. She needs her medication at 7 each night. At times, her mind races. Given her struggles with bipolar disorder, the former bank executive knows she needs help completing the document.

"My lack of control is my fear," says Mixon, of South Pasadena, Fla. "I've always made my own decisions, on my career, my kids." Now, she says, she worries that a bad turn will send her into the streets, or to an unfamiliar psychiatric hospital, where "they don't know me."

Jeffrey Swanson, the associate psychiatry professor at Duke who is leading the new study, said an effective PAD may act as a "psychiatric resume" for a patient in crisis: "This is who I am. I had my first psychotic episode when I was 21 years old. This is the medication I am allergic to. This is the one that works best for me. And I want you to notify my mom."

Like a living will, a PAD requires two witnesses and must be notarized. It may also identify someone who accepts the legal responsibility of acting as an advocate when the document's author is deemed incompetent.

In Connecticut, state officials are finalizing a PAD "tool kit," a 20-page guide to help consumers complete their documents. One of the promoters of the project is Karen Kangas, director of recovery affairs for the state mental health department.

Kangas, diagnosed with bipolar disorder, has completed a PAD that outlines preferred medication and other treatment particulars.

Her representative is her son, Deron Drumm, 32, who as a child watched her ride the cruel ups and downs of her disease. He once called 911 just in time to prevent her death from an overdose. And he has listened to his mother's painful stories about her treatment once inside the locked halls of psychiatric hospitals.

"I envision a doctor not wanting to recognize (her PAD)," says Drumm. "But I've got power of attorney, and I have the advance directive. If he insists on a medication that I know doesn't work, I'm ready to fight him. I know how to do it."

While many doctors and hospitals are accustomed to living wills being used as guides when patients approach death, PADs may be used in more complicated circumstances.

People caught in a psychiatric crisis may disavow earlier written requests for hospitalization or medication. They could become combative, forcing doctors to consider whether the no-restraints or no-isolation declarations in their PADs should be overruled for safety's sake.

In a recent medical journal study, a University of Washington researcher found that nurses, social workers, doctors and hospital administrators had concerns about the documents.

Some professionals said people with psychiatric illnesses might not be competent to outline their own care. Others worried that doctors would not have access to the documents or even know that a patient had one. Some said psychiatric advance directives would spawn legal suits by those claiming the documents were not properly honored.

Dr. Paul S. Appelbaum, chairman of the psychiatry department at the University of Massachusetts, said PADs have "considerable potential" but could become outdated and dictate treatment for a patient whose condition is evolving. "These issues really need to be thought through," said Appelbaum.

Advocates for people with mental illness, meanwhile, say much of the skepticism can be attributed to the documents' newness. They insist that until a person with psychiatric disabilities is judged incompetent, he or she carries the same rights as others to decide about care.

"They have this idea that consumers can't rationally decide about their own advance directives," said Chris Koyanagi, policy director for the Bazelon Center for Mental Health Law, a legal advocacy group based in Washington, D.C.

Swanson, the Duke researcher, said the documents may help patients even if an emergency never arises. People who talk to a doctor about their treatment preferences, as well as what may be done to prevent a relapse, may feel more in control of their care and adhere to that treatment.

"If someone starts to get sick and loses insight into needing treatment, the therapist may say, `Let's see what you said (in your PAD) about needing treatment to avoid going back to the hospital," Swanson said.

Mental health organizations have posted blank PAD forms on their Web sites. Some state governments have allotted money for programs that urge people to sit down with their doctors and complete PADs.

Over the past three years, at least 200 people in Ohio have completed PADs, officials estimated. Mental health advocates are now exploring ways to establish a privacy-protected central registry so that doctors, nurses and other professionals can check to see whether a new patient has a PAD.

"This is just another step in the whole progression of how we deal with mental illness," said Ron J. Rees, director of the Washington County (Ohio) Mental Health and Addiction Recovery Board.

Meanwhile, a track record is developing among patients who have successfully used their PADs.

Joe Peterson, 51, of New London, Conn., was hospitalized in 2000 when doctors tried to force him to take a schizophrenia drug that he said overmedicated him. Peterson refused, knowing he had completed a PAD saying he did better on anti-anxiety drugs.

"Chemical restraints such as neuroleptics may not be used," read his PAD. The hospital initially balked at Peterson's request, then relented and discharged him, recalled Susan Werboff, director of Connecticut's Protection and Advocacy for Individuals with Mental Illness Program.