Psychiatric Advance Directives for Schizophrenia

Here's a look at what you need to know about these documents, including some tips on getting started with drafting your own.

"This is an important tool for patient autonomy, and it provides peace of mind that even if you are in a period of incapacity, your preferences will be considered," says Marvin Swartz, MD, a professor of psychiatry and behavioral sciences at Duke University School of Medicine in Durham, North Carolina, who has done extensive research on PADs.

When this happens, symptoms may be intense and lead to lowered capacity, including a lack of ability to make your own healthcare decisions, says Dr. Swartz. Similar to a medical directive, which specifies care wishes like being on life support or feeding tubes, a PAD includes details on treatment preferences. Although it's possible to include hospital, medication, and proxy information in a medical directive, a PAD is tailored to psychiatric issues, he adds.

A variation of this document called an instructive PAD lays out mental health treatment choices in the event of a psychiatric crisis, while a proxy PAD names the person who can make decisions and advocate for you if doctors determine that you are incapacitated. Most people combine those two approaches, says Swartz.

"The intended purpose here is that you're not, as a patient, trying to make decisions when you're in the midst of a schizophrenia crisis," he says. "With a PAD, you still get to be in control of your treatment, and one of the biggest advantages is that you can choose someone who knows you and your wishes to handle any contingencies that come up."

• Name of a designated proxy who will be tasked with making mental health decisions when you are unable to do that for yourself
• Specific medications you want or don't want, including dosage amounts and medication timing (for example, if you respond poorly to a medication when it's given at night versus the morning)
• Treatment settings where you prefer to receive care, including hospitals and facilities
• Behaviors or signs that indicate you're losing capacity and the PAD should be activated
• Life needs that should be handled by your proxy, such as child care, pet responsibilities, informing an employer, and paying certain bills

"It's been a big problem in our field that we're unable to know the decisions of someone in a mental health crisis if they lack the capacity to articulate those needs," says Ken Duckworth, MD, chief medical officer of the National Alliance on Mental Illness in Arlington, Virginia. "With a PAD, there's much more clarity, and that's important not just for the person with schizophrenia but also for everyone treating them."

Although each PAD will be unique in terms of an individual's preferences, these documents don't need to be complicated, says Dr. Duckworth. Here are the essential elements to keep in mind.

Gather Information

Put together all of the info that you would want considered if you're incapacitated, including medications and treatment locations. Be specific about why you're making these choices, suggests Swartz. For example, you might note that a certain drug gives you severe side effects and list what those have been in the past.

"Keep in mind that what you put in a PAD is a preference, not an entitlement," he says. "Your wishes should be realistic, with the understanding that these decisions still have to be filtered through what's available and what a clinician may recommend."

Name a Proxy

Choose a person you trust and who knows you well enough that if an unexpected decision comes up, that proxy will have a good grasp of what you would want, says Swartz. There are some limitations here, he adds. For example, many states stipulate that you cannot appoint a treatment provider like a psychiatrist or other doctor as your healthcare proxy.

Distill the Info

Although there may be a great deal you'd like to include, it's better to have the information be simple and easy to read quickly, says Anna Costakis, MD, director of psychiatry residency training at Northwell Health's Staten Island University Hospital in New York.

"There are forms of the PAD that are on apps and easily kept with the person at all times, but in general, this should be like an insurance card that you can access even when you're in crisis," she says.

Legal Requirements

It's important to understand that a PAD is not recognized in every state, according to Anne Raish, senior staff attorney at the Judge David L. Bazelon Center for Mental Health Law in Washington, DC.

"Roughly half of states have a specific provision for PADs," she says. "However, even in states where there's no provision, you can use a medical directive to specify psychiatric decisions. It's helpful to consult an attorney when drafting one, but if that's not possible, at the very least you need to have the document witnessed and notarized."

Distribute Copies

Similar to a will or any other legal document, your PAD won't do much good if it's sitting in a drawer and no one knows it's there, says Raish.

"This should be treated like any other binding legal document," she says. "You need to give copies to whomever will need to have it when you're in crisis." That includes the named proxy, as well as your mental health provider, attorney, and any friends or family members who may be involved in your care.

Focusing on specificity and simplicity is important for a PAD, as is revisiting the document at least once a year to ensure that it still reflects your wishes, recommends Duckworth. In some cases, you may change your mind about a medication, your healthcare proxy, or your preferred treatment location. Reviewing those decisions when you're in a period of stability can continue to provide a sense of autonomy, he says.

"This is a major opportunity when it comes to self-determination and respect for an individual's choice," he says. "It can really up your recovery game because it gives you confidence that if there's a change in capacity, your wishes will drive the decision-making."

• Most people with schizophrenia will experience a relapse at some point, with symptoms like delusions, agitation, and confusion, which makes decision-making in the moment difficult.
• A psychiatric advance directive is a legal document put together during a time of stability that articulates your wishes in terms of medications and facilities for treatment, as well as a proxy who is responsible for carrying out decisions.
• If possible, consult with a legal professional to ensure that your PAD is compatible with state regulations; at a minimum, get it witnessed and notarized.
• Review your PAD at least once a year to make sure that it’s still in line with your wishes.