The concept of advance directives was born in 1991 when the federal government introduced the Patient Self-Determination Act, which required all healthcare facilities that receive Medicare and Medicaid funding to introduce patients to and educate health care professionals about these instruments. Shortly after, mental health advocates, drawing upon some of the elements in the advance directive, created a legal document specifically for those with serious mental illness. According to the National Resource Center on Psychiatric Advance Directives 25 states currently have psychiatric advance directives (PADs); Maine is the only New England state to implement a PAD statute.
According to David Shern, Ph.D., president of Mental Health America, a PAD typically includes many of the same elements as a health proxy. “It’s a legal document that records the person’s wishes for treatment and who is to be involved if they become incompetent,” he says. Specifically, the document names a contact person should an emergency occur, cites hospital and medication preferences and treatments to avoid, identifies authorized visitors and provides care instructions for children and pets during a crisis situation. “These written instructions are like a health proxy and increase the likelihood that you will get your wishes,” Shern adds. “The use of an alternative directive [like a PAD] can decrease the degree to which coercive intervention can be used.”
While a PAD is conceptually similar to an advance directive, there are some important differences. Shern indicates that a PAD offers a “longer longitudinal perspective for those who anticipate periods of incompetence.” He says, “This is designed for someone with more severe mental illness.” In many cases, a PAD becomes a crucial document for younger adults, Shern says. “Adolescence and young adulthood is when some mental illnesses develop. This document addresses episodic crises,” he says.
In 2003, a research team at Duke University Medical Center received a $1.98 million grant for a four-year study to investigate the use and effectiveness of PADs. Shern says, “Our colleagues at Duke created a mechanism that could be useful in addressing these episodic crises, but it’s underutilized.”
Although a primary care physician, psychologist, psychiatrist or other medical professional might suggest obtaining a PAD, the document can be accessed online, downloaded and completed by the individual, Shern reports. To increase public awareness and understanding of PADs, Mental Health America has launched My Plan, My Life – My Psychiatric Advance Directive, an online resource designed to inform consumers. “We are reaching out to community mental health providers with educational materials to share with patients,” Shern says.
Shern reports that physician and documentary filmmaker Delaney Ruston has used her skills and personal experience to further educate the public about PADs. When her father was diagnosed with schizophrenia, she discovered the existence of PADs, and, impressed with the concept, made a 12-minute film that illustrates how this document may help individuals with serious mental illness.
In an email, Guy Beales, president, NAMI Massachusetts, admits to having little knowledge about PADs, but says he did attend a workshop on the issue at a national NAMI convention. “My understanding is that the directive contains a “Ulysses clause,” (named after Ulysses who knew that he could not resist the Sirens’ call and therefore ordered his crew to tie him to the mast and ignore any pleas to untie him), which directs caregivers (and presumably the courts) to ignore the individual’s attempt to revoke the directive when the individual is ill,” he says. He points out that a regular advance directive does not have this protection. “In other words, when healthy, an individual might create a health care proxy, but when ill, the individual can revoke it. Thus, from the perspective of a family member, a health care proxy is a weak tool because it can be revoked, while a PAD would be a much stronger tool,” says Beales.
However, not everyone agrees on the necessity of having a PAD. Wendy Beinner, director, NAMI-VT, notes that the Green Mountain State legislature brought the issue of a separate directive to the table and no legislator or advocate had any interest in pursuing the matter. “My understanding is that in most states, the advance directive does not apply to mental illness. Our statute incorporates everything,” she says. “I am not in favor of having two separate directives.”
By Phyllis Hanlon