Psychiatric advance directives help ensure the best possible treatment outcomes, but they remain underutilized and poorly understood.
By Taylor Sisk
Marc Jacques lives with schizophrenia.
While Jacques has plenty of extended periods of time in which he’s doing quite well, he says “in the bad times, things can get pretty elastic for me.”
It’s for those iffy times that Jacques, executive director of the North Carolina Mental Health Consumers’ Organization and a peer-support specialist, wrote a psychiatric advance directive.
The National Alliance on Mental Illness, or NAMI, defines a psychiatric advance directive as a legal document written by a “currently competent person who lives with a mental illness” that describes the person’s mental health treatment preferences, or identifies an agent to make those treatment decisions, should the person be incapacitated in the moment due to psychiatric distress.
A psychiatric advance directive might include basic information such as allergies to particular medications or describe sensitivities that a medical professional should be aware of in interacting with the individual, in the case of a rape victim, for example.
PADs help facilitate an individual’s participation in the treatment process and, at least in theory, put the resources in place for the best possible treatment outcome, as defined by the individual when of sounder mind.
A primary objective is to minimize instances of assisted outpatient treatment, situations in which it’s determined that a person probably doesn’t require an inpatient commitment but is instead issued a court order for treatment – treatment that may run counter to the person’s wishes.
A PAD – again, at least in theory – serves to avoid the need for that court order: a plan is already in place.
But putting PADs into practice is far from an exact science. They’re often too vague to serve as true directives and are frequently not readily available when needed. The individual may be incapable of articulating that the PAD exists or where to locate it, or the medical professional may be disinclined to explore the possibility and its implications.
In short, a lack of familiarity hinders the PAD’s effectiveness.
“In my opinion, [it’s] one of the most underutilized tools out there,” said Deby Dihoff, executive director of NAMI North Carolina.
For PADs to be more effectively employed, advocates say, they’ve got to be used more frequently.
The Patient Self-Determination Act, passed by Congress in 1991, requires hospitals and other medical facilities that receive federal funding to provide information about health care advance directives to all adults upon admission. Mental health advocates took advantage of this opportunity to leverage more choice for mental health patients in their own treatment.
The law requires that hospitals and other facilities inform patients of their rights under state law to make their own treatment decisions, establish policies for honoring patients’ rights and help educate staff and the community on advance directives.
These requirements apply to both physical and mental health directives – a fact unknown even to many health care providers.
In 1997, the North Carolina General Assembly passed legislation that granted legal authority for PADs. But that didn’t guarantee smooth sailing for those with the foresight to fill out and file a PAD. Clinicians aren’t required to comply with a PAD if its stipulations are inconsistent with “generally accepted community practice standards of treatment,” when the treatment requested isn’t available or is infeasible or when the person is involuntarily committed to a 24-hour facility.
Jacques’ experience with clinicians’ responses to PADs has run the gamut.
“When you’re in the treatment setting and they want to do something to you that your advance directive says not to, sometimes there’s pushback to convince you that their treatment is best,” he said.
Many clinicians, he said, have trouble accepting what people in crisis say they believe to be in their own best interest, even if they’ve put it in writing in advance.
“But, generally, I would say the doctors I’ve had have been pretty enthusiastic about the advance directive,” Jacques said.
A ‘more positive alternative’
A second factor in the growing interest in PADs, according to the Duke University Program on Psychiatric Advance Directives, has been opposition to assisted outpatient treatment, which the program’s directors write has been criticized as “offering a perverse choice between coercion and neglect. In contrast, PADs appear to offer a more positive alternative: the possibility of both patient empowerment and beneficial treatment.” (The program offers online PAD toolkits for consumers, families and clinicians.)
Jacques agrees with the assessment of PADs as a positive alternative.
“There’s trauma inherent in being forced into a hospital, or in the situation in general,” he said. A PAD helps alleviate the stress and, he said, eases the process for the clinician as well, in that it provides a history of what’s worked and what hasn’t.
Jacques updated his PAD when he moved to North Carolina, and urges those he counsels to update whenever anything – residency, relationships, diagnoses, medications – changes.
But in order for PADs to be consistently effective, he said, “It’s going to take a lot of advocacy…. We need peer-support specialists and providers that know about these things.”
“I think anybody who interfaces with the mental health system should have a psychiatric advance directive, in the same way people have medical advance directives,” Jacques said.
He said he believes that the state is growing more aware of their importance, and points to the secretary of state’s online PAD registry service as a great resource.
Clinicians often attempt to apply to mental health patients a diagnosis of anosognosia, Jacques said, meaning they have no insight into their condition, and are therefore incapable of making appropriate judgments on treatment.
“If person goes to the trouble to fill out and file an advance directive,” he said, “it indicates they do have insight into their condition.”