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Pennsylvanians can now prepare advance mental health directives
Tuesday, March 08, 2005

Like many people, J.R. Brenner has prepared a living will, a document indicating the medical care she wants to receive if she becomes terminally ill and unable to make decisions for herself.

Bill Wade/Post Gazette
J.R. Brenner of Homestead takes medication for depression and has completed an advance directive to guide treatment she might require during any mental health crisis. An artist, she is shown here with one of her works; she titled it "Deaths Before Fifty."

But Brenner, an artist who takes medication for depression, also has signed a similar document to help direct her treatment during a mental health crisis.

"I really believe in it," said the 59-year-old Homestead resident. "For me, it's just as important as a living will."

A new state law gives Pennsylvania residents authority to prepare the documents, known as mental health or psychiatric advance directives.

The documents enable adults to appoint a representative to make mental health care decisions on their behalf and to make known their preferences about treatment options.

The directives take effect under circumstances specified in the documents or when a psychiatrist and another treatment professional determine that someone is incapable of making mental health care decisions.

The documents allow people "to be more in control and to take a more active part in their care," said Sue Walther, executive director of the Mental Health Association in Pennsylvania.

The directives can specify preferred hospitals and medications, as well as facilities and drugs patients don't want to use.

Other information may be included about mental and physical health history; dietary requirements and religious preferences; and arrangements for notifying family members, the temporary custody of children, or the release of mental health records.

In her advance directive, Brenner named a patient representative and an alternate, and included information about preferred hospitals and medications, people to be notified and those allowed to visit her. She also requested that the psychiatrist she usually sees be consulted about her care.

Patients must notify treatment providers that they have prepared a psychiatric advance directive. They can revoke all or part of the document at any time as long as they are competent to make health care decisions. The directives must be renewed every two years.

Advocates for people with mental illness note that preferred hospitals might not always be available, and that doctors may not prescribe the drugs patients want because they are not appropriate or not covered by insurance.

Still, providers of medical services must strive to comply with the instructions unless they are contrary to good medical practice.

If they cannot provide requested treatment, they must inform the patient or personal representative. And if differences cannot be resolved, they must try to arrange a transfer to another health care provider.

Petitions can be filed with the courts, however, seeking a determination that following a directive may cause "potential irreparable harm or death."

Providers also must make the directive part of the mental health treatment record and inform patients about its availability as part of discharge planning.

Gwen Lehman, executive director of the Pennsylvania Psychiatric Society, said members "very much support the concept of patients being able to make decisions about their own health care."

Twenty-one states have enacted laws allowing psychiatric advance directives, said Jeffrey Swanson, an associate professor of psychiatry and behavioral sciences at the Duke University School of Medicine.

They began to be enacted, he said, after a 1991 federal law required hospitals to inform patients about their right to prepare advance health care directives.

The law primarily focused on advance directives for end-of-life care. But advocates saw it as an opportunity to promote psychiatric advance directives to protect "patient autonomy and self-determination during mental health crises," Swanson said.

Still, many clinicians have reservations about the directives, he said. They include concerns about gaining access to the documents in a crisis, the suitability of the provisions for directing treatment during an emergency, training staff about the directives and how they should be handled, and having enough time in their practices to deal with the documents.

Some of those concerns are hypothetical, since most clinicians have had little, if any, experience with the documents, Swanson said. But others reflect "some real barriers in the system that will have to be surmounted," he said.

He also noted that the directives' long-term benefits are unclear and that a lawsuit arose over a patient's right to use an advance directive to refuse mental health treatment.

The case involved Nancy Hargrave, a Vermont woman with schizophrenia who was administered psychiatric medication even though she had stipulated in an advance directive that she opposed such treatment. She alleged that the treatment violated her rights under the Americans with Disabilities Act. A federal court agreed, and the decision was upheld on appeal.

Swanson said his research indicates that few patients want to use the documents to refuse any treatment. But many appear to have trouble completing the directives without assistance, he said.

A 2003 study by Swanson and other Duke researchers found that about two-thirds of patients with schizophrenia wanted to complete a psychiatric advance directive, but only 7 percent had done so.

Once the document is prepared, people with mental illness also may need help distributing it to doctors and other mental health professionals, he said. Unless they know a patient has completed an advance directive, "you might as well put a message in a bottle and throw it in the ocean," Swanson said.

Michael Allen, a senior attorney for the Bazelon Center for Mental Health Law in Washington D.C., said states and localities may ultimately need to fund outreach and education efforts to help people with mental illness to complete the directives.

Walther said her agency and others are offering assistance.

Harriet Baum, executive director of NAMI Southwestern Pennsylvania, noted that the issue is among the topics that will be covered at an April 30 conference at the Wyndham Pittsburgh Airport Hotel. Information about the conference is available at the agency's Web site, www.namiswpa.org.

Baum said her agency is also seeking funding to conduct workshops on the new law.

"We're doing everything we can to get the word out," she said.

While she filled out her advance directive by herself and shared it with her psychiatrist, Brenner agreed many people with mental illness may need help from a close friend or advocacy group.

If she is hospitalized, she hopes the document will give her a "choice to go where I want instead of people putting me where they want me to be."

First published on March 8, 2005 at 12:00 am
Joe Fahy can be reached at jfahy@post-gazette.com or 412-263-1722.