EDITOR’S NOTE: Due to stigma attached to mental illness and psychiatric hospitalization, this article assigns the pseudonyms Sue and Michael to a mother and son in Charlotte. NC Health News verified their identities and reviewed legal and medical records relevant to this story.
If you need mental health support, call or text 988 or consult this resources page.
By Taylor Knopf
In late summer 2021, Sue came home from work to find her 24-year-old son Michael confused. He shrugged in response to most questions and muttered words that didn’t make much sense. Sue knew something was wrong because this wasn’t the first time this had happened.
Michael was involved in the Eagle program at Atrium Health, an outpatient project designed to support young people in Charlotte after an initial psychotic episode. Sue called the Eagle program nurse, and they suggested that Michael go to the hospital before his symptoms got worse.
Sue and Michael were nervous because Michael had suffered adverse reactions to some psychiatric medications in the past. But this time, they had one source of reassurance as they headed to the hospital: a psychiatric advance directive. That’s a legal tool allowing someone with mental illness to instruct medical providers about what kind of treatment and medications they prefer — and which ones they do not — in the event of a mental health crisis.
“They can serve as a way to protect a person’s autonomy and ability to self-direct care. They are similar to living wills and other medical advance planning documents used in palliative care,” says a guide on the federal Substance Abuse and Mental Health Services Administration website.
Sue and Michael had a copy of this legal document in hand as they walked into Atrium hospital that day. It was also on file in Michael’s medical records, which North Carolina Health News reviewed with his mother’s permission.
Michael’s psychiatric advance directive listed five medications that he did not consent to, and the document explains that they’ve made him aggressive and paranoid in the past. But after Sue left the hospital for the night, Michael was given one of those five medications.
“The advance directive clearly had medicine that he was allergic to listed on there, and they just disregarded it,” Sue said. “So once they did that, he spiraled downward quick.”
Psychiatric advance directives have been around for several decades, but researchers have found them to be underused. Too few patients and medical providers in North Carolina and across the country are aware of the legal tool and how it works. This leads to frustration for people like Sue and Michael who complete the legal document only to have it disregarded by doctors.
Avoiding involuntary commitment
Advocates encourage people with a mental illness to set up a psychiatric advance directive as a way to have their preferences taken into account during a potential mental health crisis, which may help avoid involuntary commitment.
Patients are often upset — and traumatized — when they end up involuntarily committed after they voluntarily go to the emergency room during a mental health crisis. Patients under an involuntary commitment are usually transported in handcuffs by law enforcement to a psychiatric hospital.
Involuntary commitment is a legal process that is supposed to be a last resort when a person is determined to be an immediate danger to themselves or others. But too often, it has become the standard of care. Involuntary commitment petitions have increased at least 97 percent in North Carolina over the past decade as hospital emergency departments regularly use the legal tool to handle the droves of patients in need of psychiatric care, as NC Health News previously reported.
The psychiatric advance directive template, which is available on the NC Secretary of State’s website, includes a section to consent to treatment, including inpatient hospitalization, and gives patients a place to indicate which facility they would prefer. In theory, having this document would make involuntary commitment unnecessary. But there’s a caveat: “Your instructions may be overridden if you are being held in accordance with civil commitment law,” the advance directive template reads.
In effect, once hospital staff decide to involuntarily commit a patient, that overrides an psychiatric advance directive.
Legal advocates, medical professionals and patients have told NC Health News that even with a psychiatric advance directive in place, involuntary commitments still happen — and patients’ wishes are not always honored.
Duke University professor and psychiatrist Marvin Swartz has done significant research on the implementation of psychiatric advance directives. He told NC Health News that there is a lot of ignorance among health providers about how they work and that medical professionals “reflexively go to involuntary commitment.”
“It’s hard work turning the ship, because everybody’s just used to involuntary commitment. And it’s also used as a form of transportation,” he said, referring to how once a patient has been involuntarily committed, law enforcement is mandated to transport the patient.
He also said a “formidable” barrier is the way medical providers worry about the risk of a malpractice lawsuit when making their decisions.
“Everybody worries about risk,” he said, “not necessarily about patient-centeredness or how to preserve the autonomy of a patient.”
More education needed
Though psychiatric advance directives could be a powerful tool for people with mental illness, they are not widely used. Researchers and advocates say there needs to be more education for patients and for providers.
“Unfortunately, a large gap remains between the abstract promise of [psychiatric advance directives] and their implementation; few patients complete [the directives], and most mental health professionals are unaware of them,” Swartz and fellow researchers wrote in a 2020 paper published in the journal Psychiatric Services.
Several barriers exist, including the difficulty of completing the legal forms without assistance, an inadequate infrastructure for retrieving the information in a patient’s advance directive, “clinician burden and skepticism, and health systems’ reticence to implement them,” Swartz and his colleagues wrote.
The legal document can be tricky to understand and fill out, particularly for patients with more severe and persistent mental illnesses. There have been recent efforts in North Carolina to train more advocates and peer support specialists who can help others create an advance directive.
The North Carolina chapter of the National Alliance on Mental Illness holds regular virtual training sessions for anyone interested in learning more about psychiatric advance directives and how to fill out the form. The National Resource Center on Psychiatric Advance Directives is also a useful resource with state by state information.
Ashish George, public policy director at NAMI North Carolina, has led many of the free virtual trainings and given presentations on psychiatric advance directives for hospitals around the state. He said he reminds people that “filling out a psychiatric advance directive is not a guarantee of anything, it just increases the odds that you’ll preserve some freedom at a time when you’ll be unfree because you’ll be deemed to be medically and legally incapable” of making independent decisions.
George highly recommends filling out the second part of the psychiatric advance directive, which designates a health care power of attorney to advocate for the patient and ensure that the advance directive is followed.
“Make sure your health care agent is an assertive person,” George added.
When a health provider doesn’t follow a psychiatric advance directive, as in Michael’s case, patients feel as though their hands are tied. They also tend to lose trust in the medical system.
Swartz said compliance with these advance directives is a “condition for participation” to receive insurance reimbursement from the federal Centers for Medicare and Medicaid Services.
“Thus far, lapses in compliance are typically complaint-driven, and systematic enforcement is infrequent,” Swartz and his colleagues wrote. “Many advocates hoped that potential sanctions for noncompliance would be an effective lever for health system compliance.”
That hasn’t been the case.
In Mecklenburg County, assistant public defender Bob Ward represents patients under involuntary commitment almost daily and, in the process, has become an advocate for mental health reform. He’s helped his clients set up psychiatric advance directives and says more needs to be done to ensure that they are considered during treatment.
“I think the only way to get these enforced is to have some sort of enforcement mechanism put into the statute, similar to what the 504 plans are for schools,” Ward said, referring to a federal law that ensures that students with disabilities receive the services they need.
“If they did special education plans the way they do the psychiatric advance directives here, there would be no special accommodations in the schools because they just wouldn’t do it,” he said.
Over the past several years, Ward said that legal action has rarely been an option for patients. He said malpractice attorneys he’s spoken with said the broad, temporary liability protections created during the pandemic for health care systems and providers made such matters harder to litigate. That left patients like Michael, who was hospitalized in 2021, with limited options for legal recourse.
The COVID liability protections ended last summer when the governor lifted the pandemic state of emergency. But even with the possibility of more legal options, Ward said the problem remains that there is no apparent remedy within the law itself.
“If there are no standard civil remedies in place, I believe we need a statutory one,” he said.
After hospital staff failed to follow Michael’s psychiatric advance directive and gave him a medication he’d previously had negative reactions to, he became aggressive. In their notes, hospital staff describe Michael taking unprovoked swings at staff, being placed in a manual hold, refusing blood draws for labs, tearfully mumbling incoherent phrases and asking to leave.
Sue said she believes the psychiatric medications medical staff used to try to stabilize Michael’s behavior made him worse. As his health care power of attorney, Sue said she began to refuse the psychiatric medications.
“And when I refused the medicine, he got back to himself,” she said.
Michael also has a history of liver issues, and his mother suspected that could be complicating matters because his blood tests showed elevated levels of ammonia. Once he was stable enough to be released from the hospital, Sue reached out to a liver expert at the Cleveland Clinic in Ohio, who reviewed Michael’s medical records and agreed to see him.
The Cleveland Clinic physician diagnosed Michael with hepatic encephalopathy, a nervous system disorder caused by severe liver disease. Because Michael’s liver wasn’t working properly, toxins were building up in his blood and affecting his brain. The symptoms of his disease mimicked psychiatric symptoms.
“So it wasn’t psychiatric at all actually,” Sue said. “That’s why he was having problems with the medications they would try to give him.”
Sue said she was frustrated that her son’s medical providers in Charlotte didn’t step back to figure out why he was having negative reactions to the medications.
“They really need to be more cautious about giving people psychiatric medications without really knowing what the problem is,” she said. “They need to do more testing.”
When a patient shows signs of mental health crisis, health professionals are supposed to explore the possibility of medical problems that could be contributing to or masquerading as a mental illness. In fact, the General Assembly passed a law that went into effect in 2019 that included the creation of a screening tool to help health providers direct patients to proper care.
Today, Michael is doing well. After two medical leaves of absence from school, he is back in the classroom and scheduled to graduate from UNC Charlotte in December. With the medication prescribed by the Cleveland Clinic physician and a somewhat strict diet, he’s able to keep his symptoms at bay, Sue said.
Michael has also updated his psychiatric advance directive to reflect his liver disease and necessary medications — and to note that he no longer consents to being admitted to a psychiatric hospital.