When Faith Rhyne needed help to head off an oncoming mental health crisis, she turned to emergency health providers. But before she knew it, she was being restrained and forcibly medicated, triggering a full-blown panic attack.
Rhyne knew that she had PTSD. Her health care providers did not.
“It was really, really horrifying,” Rhyne recalls. “I know that everybody was doing their best and acting by protocol, but if I’m in a position where I’m overwhelmed and in distress to an extent that I’m not able to effectively communicate my needs and preferences, I lose power.”
While at the time the experience left her feeling helpless, it also spurred her to action years later.
Today Rhyne works as a certified peer support specialist at Sunrise Community for Recovery and Wellness in Asheville. Part of her work is helping people with substance abuse, trauma and mental health issues fill out psychiatric advance directives — a document that allows patients to provide clear instructions about their mental health care to providers during times of crisis.
While it has been years since Rhyne has needed a mental health intervention, she hopes that spreading awareness of psychiatric advance directives, known as PADs, will help other individuals take a proactive approach to their care and maintain a sense of control during times of uncertainty.
“It’s scary for an individual to feel out of control. It can be really terrifying and really traumatic for individuals, not to mention for family members,” Rhyne says. “Having a psychiatric advance directive is at least a way to say, ‘This is what you might see and this is what’s going to be helpful for me,’ and to help create a dialogue between individuals and their supporters so we can make a road map for care.”
‘The advance directive you’ve never heard of’
Angeleigh Dorsey, senior managing attorney at Legal Aid of North Carolina’s Senior Law Project in Asheville, says PADs are legal documents that may provide people a way to express their health care desires ahead of a mental health crisis. PADs are drafted when they are well enough to provide informed consent of their mental health preferences. While the document has been in use for more than 20 years, it has recently gained popularity among health care and legal professionals.
“I did a presentation for Legal Aid at a conference a couple of years ago titled ‘The Advance Directive You’ve Never Heard Of’ because most people, even attorneys who have been doing these documents forever, are really not aware of this particular piece of health care planning,” Dorsey says.
Today, according to the National Alliance on Mental Illness, 25 states, including North Carolina, have laws that permit psychiatric advance directives. Patients in states without legislation that supports PADs can still engage in health care planning through documents such as a health care power of attorney or a living will.
A PAD, however, is different from these because they provide specific instructions to health care providers, such as what types of medications a patient prefers, what types of treatments they wish to decline and details about how a patient might react during a crisis.
Dorsey, who also serves as a board member for NAMI of Western Carolina, says while all forms of health care planning have their advantages, PADs provide specific instructions for mental health and can be completed without legal representation. People can find PAD forms through N.C. Secretary of State’s office website and are required to sign the document in the presence of a notary public and two witnesses who are not relatives.
“It’s very straightforward,” Dorsey says. “It does take a little bit of effort to get the right people there for you to sign this document, but really, they’re designed for people to fill these out and complete them.”
Dr. Craig Martin, chief medical officer for Vaya Health, a care organization based in Asheville for people facing mental illness, substance abuse or intellectual disabilities in Western North Carolina, says people who face recurring mental illness that requires occasional hospitalization would benefit the most from obtaining a PAD.
“There’s a subset of mental illness called ‘serious and persistent mental illness.’ It would probably be comparable to something like Type 1 diabetes where, despite your best attempts to keep it under control, sometimes your blood sugars may go too high or too low and you might have to go to the hospital for stabilization,” Martin says.
Martin, who has worked as a psychiatrist with adults and children for more than three decades, says PADs allow patients to inform providers of what medications help, as well as those that have caused negative reactions.
“If you’ve been put on a medicine in the past and you had a terrible reaction, what’s called a dystonic reaction, where your head twists and your throat freezes up and you have a hard time relaxing your muscles, it can be pretty terrifying,” Martin says. “You wouldn’t want to have to be put on that medicine again, but the doctor in the emergency department might not know that about you unless there was some resource to find out what works and what doesn’t work.”
Requests can include a variety of specific information about care, such as a patient’s desire for physical touch, to be left only with certain individuals or for providers to use certain words or phrases of reassurance. Dorsey says many of her clients include their refusal of electroconvulsive therapy, the passing of electrical currents through the brain, intended to calm severe mental health symptoms.
“I work with older adults, so all of my folks are over 60, and the people of that generation, I think, a lot of times equate it with the treatment in the ‘40s and ‘50s, when people would get that shock therapy,” Dorsey says. “My understanding is that it’s not the same thing as what they do today, but that’s just a common one. People don’t want the shock treatment.”
While PADs are a legally binding document, their power may be legally overridden by health care providers through civil commitment law, a legal process that requires patients to be involuntarily committed when health care professionals deem such treatment to be necessary.
Patients may also find that some of their directives require specialized medical equipment or are not included among current methods or techniques accepted by health care professionals.
“Let’s say I that when I have problems with my thinking, I want a whirlpool bath three times a day and I’m admitted to a hospital that doesn’t have a whirlpool bath or they’re concerned that this type of therapy might not be the best thing for me,” Martin explains.“The hospital is not obligated to do something it can’t do and they’re also not obligated to do something that’s not considered best practices.”
Doctors may also override a PAD when medical treatment is found to be absolutely necessary to save a patient’s life.
“The other thing that you have to think about is what is an emergency situation,” Martin says. “Let’s say that I put on my form that I never want any psychiatric medicine at all because I don’t believe in it and the doctors try everything else and I’m still not getting better and, in fact, I’m getting worse. Then there is the capacity to override a directive just to help save the life of the person.”
Dorsey notes that those with a PAD maintains the right to change or remove the document as long as they are well.
“It’s a revocable document, so you can always change your mind. As long as you’re capable, you’re in mental health recovery and you’re doing fine, you can change these documents.
“When you go to the hospital when you’re in crisis and you want to change your mind then, you can’t [make changes],” Dorsey says. “However, if down the road you’re still well and you decide, ‘Well maybe that medication is OK or maybe I’d be OK with this,’ or if you decide that you’re well enough and you don’t need this, you can revoke it as long as you are capable at the time.”
Rhyne’s work as a peer support specialist allows her to provide free help to people seeking to complete a psychiatric advance directive. The process of filling out a PAD, she says, provides a proactive way for individuals to assess their own mental health triggers and how to manage them.
“Whether or not you ever use that document, the process itself creates the opportunity for the person to kind of think about ‘What does happen if I go into crisis? What all is involved in that for me? And what would be helpful?’” Rhyne says. “It can be a real opportunity for people to develop not just self-awareness but to share that with their family members. Even if it’s never used, there’s still just a lot of value in crisis planning.”
As more people seek to take control of their mental health care through the use of a PAD, Rhyne hopes the documents will help facilitate an open dialogue among individuals, family members and health care providers.
“We live in a culture where you’re supposed to be OK. You get up and do the things that you plan to do and deal with this stressor and that stressor and that schedule and meet these expectations,” Rhyne says. “If somebody starts feeling like ‘I am not OK,’ that can be a really difficult thing to acknowledge both to yourself and to your employer, your family member, it’s a tough conversation to have. I think the more sensitive we are and the more humanizing these sorts of difficulties are, maybe we’re getting better at having those conversations.”