Stephanie Hepburn is a writer in New Orleans. She is the editor in chief of #CrisisTalk. You can reach her at editor@crisisnow.com.
There are several themes when it comes to psychiatric advance directives (PADs), including legal and clinical aspects, but also, equally important, is that they give people with serious mental illness the autonomy to make decisions for themselves when, and if, they become incapacitated. Jeffrey Swanson, Ph.D., a psychiatry and behavioral sciences professor at Duke University, says there is also reality: the daylight between the concept of advance directives and the actual implementation. “There’s what’s put on paper and what happens out there, in the crisis care machinery, when people who have serious mental illnesses are experiencing a crisis.”
Advance directives arose from the Nancy Cruzan case in the early ‘90s. Cruzan had been in a car accident at age 25 that left her in a vegetative state for 8 years, resulting in a bitter debate on whether to allow her to die. The case went to the Missouri Supreme Court, which ruled that Cruzan’s parents, her court-appointed guardians, needed to have clear and convincing evidence of her wishes as it pertained to withdrawing life-sustaining medical treatment. In response to the Cruzan case, there was a significant push in the ‘90s for living wills and advance medical directives, ensuring that people’s wishes were written down ahead of time, notarized, and witnessed so that no one, including a court, could dispute them. Those in the mental health field soon realized advance directives could also be used for a different sort of incapacity like when someone is experiencing a mental health crisis. It would allow people with serious mental illness to put measures in place when they were feeling well to protect themselves in times when they were not.
Psychiatric advance directives, which vary by state, have two components: instructions and a substitute decision-maker. In the instructions portion, a person can give advance consent or refusal of particular kinds of medications or hospitalization. “You can say, ‘Don’t, under any circumstances, give me the antipsychotic Haloperidol, or don’t give me electroconvulsive therapy, but I do want to have Olanzapine because that has worked well for me in the past.’” People can use the instructions for specific treatment requests or articulate their preferences and values that would help guide a treatment provider. Dr. Swanson says there was and is a great deal of understandable concern about involuntary treatment, and these legal instruments are seen as a way for a person to be her or his own agent, putting the force of a legal patina on it so that a hospital would be obligated to follow the directives except in certain circumstances. The second component, the procedural mechanism of authorizing a healthcare agent, a substitute decision-maker, became necessary because many states had an exception written into their health care proxy law that said, ‘You can do anything as a proxy except sign someone into a psychiatric hospital against their will.’ “Well, that was one of the main reasons many people wanted to create an advance directive.” Designating a substitute decision-maker gives the proxy the same legal rights the primary person would have if not incapacitated.
Dr. Swanson and his colleagues conducted a survey, asking people if they would want PADs, and roughly 75 percent said yes. Yet it was an unmet need because while many people wanted it, few had done an advance directive. In response to the gap, Dr. Swanson developed a facilitated psychiatric advance directive (FPAD), which is an intervention that fosters advance treatment planning among people with serious mental illness. Facilitators, made up of both clinicians and trained peers, take roughly an hour to ninety minutes to help people articulate preferences, including a brief psychiatric biography and what they would want staff to know if they showed up in their emergency department. “The objective is to create a document that is helpful to the provider rather than tie their hands.” To determine the efficacy of the FPAD intervention, Dr. Swanson and his research team did a study assigning people with a trained facilitator or giving them literature and referrals to resources in the community. Sixty-percent of the people in the experimental group completed an advance directive compared to less than 10% of the other group. “It showed the dire need of a facilitator for people who have serious mental illnesses.” Dr. Swanson did a followup and found that there were numerous benefits. In the short and long term, people experienced improved working alliances with outpatient providers because they felt empowered by having a personalized document that expressed their wishes. They had more satisfaction with their treatment over the first year, and there was increased alignment between the medication people wanted and were prescribed. Over two years, Dr. Swanson found a significant reduction in coercive crisis interventions, including transport to a hospital by a police cruiser, involuntary commitment, and seclusion and restraint during hospitalization.
The problem, says Dr. Swanson, is that researchers like himself often figure once data are released, those in the field will systematically alter their practices. Instead, advance directives were met with resistance and barriers in the system at many levels. “We’re standing in our ivory tower and rolling advance directives down the hill like a bowling ball with the hope that, by sheer force of gravity, it will change the world. It’s really the opposite, we’re standing at the bottom of the hill trying to push the ball upward.” To illustrate this point, Dr. Swanson mentions a man with Bipolar Disorder who was in the study and completed an advance directive. Sometime later, he stopped taking his medicine and became manic. During his crisis experience, all of the elements of his advance directive went out the window. He’d specified that he didn’t want to be handcuffed or taken to the hospital by a police cruiser, that Haloperidol was a medication he didn’t want to take, and he named the state hospital he didn’t want to go to. Each and every directive was ignored. The reason is that all along the way, no one knew what PADs were, including the police, the intake and hospital staff, and the hospital attorney. The latter responded with, “Well, I’ve never seen one of these, it looks legal, but we are not obligated to provide him what he wouldn’t get otherwise.” When the man told Dr. Swanson what happened, he braced himself to hear that the man thought PADs weren’t worth the paper they were written on. “Instead, he said, ‘This just shows why we need these instruments but also why you have a lot of work to do. It’s not enough just to get someone to fill this out. You have to actually change the system.’”
There must be a transmitter and a receiver of advance directives, but Dr. Swanson says there is resistance because people in the mental health field are overworked and think the document will further compound what they have to do. The law, in most states, is generous to doctors, allowing them to override a directive if it doesn’t comport with what they believe to be standard community practice. The larger concern is that clinicians think if they allow patients, who they believe don’t have insight into their needs, call the shots, they will use this to refuse treatment. Dr. Swanson believes what will make a marked change in the field is when there are enough people with advance directives to reach critical mass, so the system has to deal with them. “Currently, few people get them done, and we don’t have the human resource workforce to facilitate advance directives for a large number of people who need them.” Dr. Swanson is examining new models, including training facilitators on Assertive Community Treatment (ACT) teams. “PADs must be done in a way that’s legally sufficient and available. Otherwise, you might as well roll it up, put it into a bottle, and throw it into an ocean and hope someone finds it.”
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