NIMH funds $1.98 million study of advance directives for patients with mental illnesses

September 16, 2003

DURHAM, N.C. -- The National Institute of Mental Health has awarded a Duke University Medical Center team $1.98 million in research funding to study the use and effectiveness of "psychiatric advance directives (PADs)" -- legal documents created by patients who have planned ahead for their preferred course of treatment during a mental health crisis. This is the first major study funded by the U.S. government to evaluate PADs from initiation to outcomes, said the researchers.

Despite the spread of laws that authorize the use of advance directives in the care of patients with mental illnesses, little research has been done to determine the effectiveness of these legal instruments. Although patients in 16 states have the right to create a PAD, very few take advantage of it, according to researchers at Duke. The four-year study will examine whether psychiatric patients will complete advance directives if they are provided the resources to do so, and will also determine whether or not doctors and hospitals can effectively put the plans into action.

"Americans place a high value on the right to make their own health care decisions, but gravely ill patients sometimes are incapable of deciding for themselves or communicating with doctors about the treatment choices they face," said Jeffrey Swanson, Ph.D., an associate professor of psychiatry and behavioral sciences at Duke and principal investigator on the study. "Patients with a terminal illness often plan ahead using a 'living will,' or appoint someone they trust to carry out their wishes for treatment. People who know they have a serious psychiatric disorder should be able to do the same thing."

The Duke team wants to find out why PADs are in such limited use and whether implementing such directives would help patients gain access to timely treatment during mental health emergencies without the need for involuntary commitment.

"Mental health consumers and advocates are very concerned about the use of coercion in treatment," said Marvin Swartz, M.D., head of social and community psychiatry at Duke and the study's co-principal investigator. "Advance directives are being seen as a possible antidote to it."

Many persons with schizophrenia, bipolar disorder and other serious mental illnesses are treated primarily in the community but may, intermittently, require hospitalization. In such situations, there is often little communication between inpatient and outpatient mental health service providers, and patients are commonly viewed as incapable of speaking for themselves. As a result, quality of care may suffer, and patients may lose a sense of control over their own fate, the researchers said.

Swanson and Swartz and their colleagues are developing and testing new ways to help patients with mental illnesses prepare their own legally valid advance instructions for mental health treatment. They also are working to provide better information to support family members, doctors, mental health professionals and hospitals in using PADs.

The study will enroll more than 500 patients with serious psychiatric disorders. One-half of the patients enrolled will have the opportunity to create psychiatric advance directives with the help of a trained facilitator. The other group will also have the opportunity to create a PAD, but will be given the resources to do so on their own. The second group of patients will serve as a comparison group. PADs will be filed electronically with the U.S. Living Will Registry, a computerized service that stores medical advance care documents and makes them available at any time to authorized healthcare facilities.

In a study published earlier this year, the Duke researchers found that roughly two-thirds of patients with schizophrenia wanted to have legal advance instructions for mental health treatment, yet only 7 percent had completed PADs. The patients interviewed were all from North Carolina, a state that does recognize these documents.

"Advance directives could help by providing key information to hospital clinicians who may never have seen the patient before," said Swartz. "Patients can use advance instructions to create a thumbnail medical record that would be extremely helpful to the emergency provider."

This document could include information on previous psychiatric diagnoses, the number of relapses the patient has experienced, the names of the hospitals or clinics that have treated them for the problem, the medications that do and do not work for them, and information on allergies. A patient could also state that if they do become very ill and need to be hospitalized, that they have already given informed consent to be admitted, Swartz added.

According to advocates and legal experts, one of the most contentious issues in mental health law today is the use of coercion to impose treatment on psychiatric patients.

"Many things, such as housing or disability benefits, seem to be used as leverage to get people to accept mental health treatment," says John Monahan, Ph.D., Doherty professor at the University of Virginia Law School. "Some people see PADs as just another leveraging tool, even though it is self-mandated. Others see PADs as a tool that could immunize people from coercion, while still others see it as a way for people to take control of their own care. The path-breaking research being done at Duke will allow PADs to be properly understood for the first time. The data will be a major advance."
Additional research funding for the study has been provided by the John D. and Catherine T. MacArthur Foundation and the Greenwall Foundation.

Duke University Medical Center

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