After observing the sometimes useless, often tragic, intrusion of law enforcement into the lives of people like Monte and Todd, I began to wonder if the law could in fact be used to help them instead. In Los Angeles, and across America, we warehouse people with mental illness in jails after court hearings that may last only a few minutes. But there is also a tradition—and now a renewed movement—of using the courts as a path for treatment.
“When you’re carrying a hammer, everything looks like a nail, and when you’re a judge carrying a gavel, everyone looks like a defendant,” says Judge Oscar Kazen, his deep voice hinting at his Texas roots. Today, he says he enjoys doing more than just banging his gavel to consign the convicted to punishment. “We get to help people.” Modeling their efforts after the drug courts that compel substance abuse treatment rather than incarceration, he and colleagues established a court to help people follow prescribed treatment.1
Early in his career as an attorney, Kazen thought, “You have the right, if you want, to stand on the corner all day long and stare at the sun. As long as you’re not hurting anybody, you can go right ahead and do it.” But once he got onto the bench, he came to see personal-autonomy rhetoric as, at least in part, a societal cop-out. “It’s a much easier thing to wrap your arms around civil liberties and not have to spend the money on treatment courts and placing people in long-term or at least significant treatment for seriously mentally ill individuals so that they can somehow make wellness their habit instead of illness.” Although he’s “not advocating restraint on liberty for anybody that’s seriously mentally ill,” he insists that human decency ultimately requires “some more rigorous form of treatment rather than the revolving door that we now have.”
Kazen is one of a half dozen judges I’ve spoken with who are employing what is referred to as therapeutic jurisprudence. From New York to Miami to Los Angeles, judges are revisiting the ethics of mandated treatment, which had fallen out of favor since the 1960s. For those individuals with SMI who’ve committed a crime, there are mental health courts (MHCs) whereby the judge diverts someone convicted of a misdemeanor or felony toward comprehensive treatment instead of jail. (More on MHCs in the next chapter.) Then there’s assisted outpatient treatment (AOT), designed to help people who don’t have criminal charges pending but have demonstrated difficulty engaging with treatment and avoiding the hospital (and often have extensive arrest histories as well). AOT is for people who are not facing jail but desperately require, yet struggle to adhere to, treatment.
AOT is a less drastic option for leveraging treatment than conservatorships or guardianships. A conservator or guardian is authorized by law to make medical and financial decisions on behalf of an adult who can’t maintain his or her own health and safety. For adults with SMI who pose a grave danger to themselves and/or others, a conservator assumes, for varying lengths of time, the kinds of decision-making power that parents have over minors. The conservator is usually a local relative or a trained professional from a registry held by the state. Conservatorships are often initiated by family members at their wits’ end or by a medical team at a psychiatric hospital that deems a patient in urgent need of extended treatment that the patient would otherwise resist. The arrangement resembles a hostile takeover of someone’s autonomy, and the whole matter is often fraught with suspicions and conflicts. The conservatorship requires continual court appearances, lawyer meetings, substantial fees, and never-ending paperwork.
Although I had long known about these drastic measures to force treatment, I never felt they were an option for my sister. While my mother was alive, it certainly would not have been possible. After her passing, when Merle was living alone, I considered the possibility. Perhaps I could have had the police take Merle to the hospital and then applied for a conservatorship. But arguing my case would not have been easy. Still, looking back—and like almost every family member I know who’s lost a loved one tells me—I wish I had tried.
New York’s AOT program was established by Kendra’s Law, named after a woman who was fatally shoved into the path of a moving subway train by a man with paranoid schizophrenia who had previously refused treatment. Under the law, New York State judges have mandated treatment, including medication, for more than 25,000 people since its implementation in 1999.2 As Carolyn D. Gorman, previously the project manager for mental illness policy and education policy at the Manhattan Institute, wrote in the New York Post, “Leaving those who are seriously mentally ill—who are vulnerable and often homeless, victims of violence themselves or institutionalized in jails and prisons—without treatment is an ethical failure, as well as a safety issue.”3
In Summit County, Ohio, probate judge Elinore Marsh Stormer ran a mental health court (MHC) in 2000, geared toward helping people with psychiatric disorders who had committed a crime. Judge Stormer tells me, “We were missing the civil piece where people didn’t have to get arrested to get mental health treatment.” The program, called New Day Court, serves people who have been civilly committed to a psychiatric hospital. Following their hospital discharge, Judge Stormer assigns each individual a case manager from a community treatment center who helps provide the resources necessary for recovery. “Do you need housing? Do you need clothes? Do you need food? Do you need to see a medical doctor as well as a psychiatrist?” The case manager’s job is to help provide it, enabling individuals to get back on their feet. Meanwhile, as opposed to the business-as-usual approach whereby courts, hospitals, judges, and doctors wash their hands of the patient and their family after someone with SMI is deemed competent to rejoin society, Judge Stormer examines the treatment plans to make sure they have a reasonable chance of success, and follows up with periodic conferences to confirm that participants are engaged with the process.
Unlike in a mental health court for people with untreated psychiatric disorders and a Drug Court for people with untreated addictions where a judge can incarcerate a noncompliant participant for committing a crime, an AOT court order cannot be the basis for putting someone in jail if they refuse medical care. So, the person with SMI won’t face jail time for noncompliance but can be forced into inpatient care. “All I can do is threaten people with hospitalization,” Judge Stormer says, but since “nobody wants to be in the hospital,” that is often incentive enough. She takes advantage of “what we lovingly call the black robe effect”: the power of the bench to influence behavior.
In Texas, Judge Kazen also puts the black robe effect to good use. Many people confronting the choice between AOT or continued hospitalization will agree to AOT, he tells me. During his decade presiding over Bexar County’s AOT, he has seen the life-changing power and positive impact of leveraged treatment. “Surprisingly, for most of the people who go through that assisted outpatient treatment, that small crack of a door opens. Because after about six months on the order, you develop a relationship with them. They realize, ‘Wow. These people are really here to help me. They’re really not trying to throw me in jail.’ It’s kind of like what happened with Eric.”
Eric Smith had been diagnosed with bipolar disorder as a teenager. Before the diagnosis, Eric explains, he’d “had no way of knowing that how I felt was out of the norm in any way.” The news of his disease left him both disappointed and relieved that there was a name for what he was going through. As Eric’s illness progressed throughout his twenties, he was prescribed basically every drug psychiatry had to offer, including mood stabilizers, benzodiazepines, and antidepressants. Sometimes he felt the medications helped but other times not. Bothered by side effects and generally unconvinced, Eric occasionally skipped doses or stopped taking his prescriptions entirely. At times, he lost faith in the idea that any treatment could help. “I have been on everything under the sun and every time a new med comes out, I’m on that and here I am, still bipolar and in a bad state,” he recalls thinking at the time.
For years, Eric self-medicated with street drugs (“the only thing that I never, ever touched was heroin”), which led to a co-occurring SUD. “I know that might sound like a cop-out for someone to do drugs but I’m telling you, my mind was chaos unless I was using. Not that it wasn’t chaos when I was using, but it certainly made me feel like it wasn’t chaos,” he tells me. The drugs gave him “a peace of mind that none of the meds I had been prescribed” managed to offer. He wound up in rehab in 2006, at age twenty-three.
Two years later, he was sober, but his mind was cycling between depressive lows and manic highs, despite taking his prescribed medications. Before he wound up in jail, he had been awake for nearly three days. “My body was tired; my mind was tired but simultaneously the ‘up’ side of me was winning and I couldn’t sleep.” His head was a swirl of grandiosity, impulsivity, racing thoughts, and delusions. “I believed that I was working along with the FBI. I believed I was part of the CIA. I believed I was part of the Secret Service.”
In addition, despite not being in a romantic relationship, Eric was “under the impression that I needed to find a bride immediately. ‘If I need a bride, I need diamond rings,’” he thought. He walked into a jewelry store and bought an engagement ring and a wedding band. (Excessive and impulsive spending often occur during the manic phase of bipolar disease.)
“Then I went to go show my parents that I got these diamonds.” For weeks, Eric’s parents had been growing increasingly more worried, with no idea how to help or keep him safe. When they finally reached a psychiatrist who had worked with their son previously, the doctor urged them to admit their son to a psychiatric facility. The best way to do this would be to have him arrested, the idea being that the police would quickly transfer him from jail to a mental hospital for observation. Unlike Monte’s family, Eric’s parents may have been less worried about involving law enforcement given that their son was white. Still, things did not go as planned.
For several days prior to his jewelry spree, Eric had become increasingly hostile toward his parents. He began making threats and, in accordance with the psychiatrist’s advice, they issued a restraining order against him, knowing that if he violated the order, he would be arrested. He challenged his father to “go ahead and call the police,” Eric says, “and then I went and sat down on their porch until the police showed up and arrested me. I made no attempts to resist arrest.”
What happened next was “horrendous.” At the police station, he was stripped of his clothes and left naked in a cell “in the midst of a bipolar delusional meltdown.” Officers ordered him to spread his buttocks and lift his scrotum so they could look for contraband. “It was a dehumanizing experience from the very beginning.” To this day, Eric identifies deeply with people who are incarcerated, no matter if they’ve broken the law or if mental illness isn’t a factor. “It was horrible.”
Things grew worse when he was transferred to the San Antonio jail, where officers in riot gear and helmets would run into the holding pens to break up the near-constant fights. The jail did not carry his prescribed psychiatric medications, so he remained inadequately treated for the month he spent behind bars. His agitation worsened to the point that the authorities transferred him from a room of thirty people to a solitary cell where he remained isolated for twenty-three hours a day. On two separate occasions, he recalled being allowed in a common area for fifteen minutes. “After that, police and inmates told me I was making people nervous, so they kept me isolated in that solitary cell thereafter. There was a window and I could occasionally hear TV or people talking,” Eric tells me. Otherwise, “I was by myself just decompensating in a jail cell.”
His decline left him in such bad shape that guards at one point refused to let his parents see him although they’d waited hours for the chance. Corrections officers told them that he was potentially dangerous. “I’m told that led to my mom crying pretty bad,” Eric says. “She wanted to see me, and she knew I was in a bad place. Luckily, there was an officer there who had a family member who also had a serious mental illness. He understood the scenario and I guess he pulled rank. My parents were finally able to come see me. Everything in jail, everything, other than the occasional compassionate, understanding officer, it was a just a nightmare.”
Eric’s incarceration did ultimately lead to treatment, however. Jail officials had been telling his parents that no hospital bed was available and that they were preparing to release him onto the streets. But at the eleventh hour, after a tremendous effort by his family and a social worker at the jail, he was admitted to a psychiatric hospital. He was the most ill he’d ever been. Convinced he worked for the Secret Service, Smith heard the voice of then CIA director General David Petraeus issuing orders.
Over the course of Eric’s three-month hospital stay, his medications were adjusted, his condition was stabilized, and his symptoms finally receded. He was transferred, under the Bexar County AOT program, there called Involuntary Outpatient Care (IOPC), to a group home that “had lots of rules,” including mandated medication.
Seven years after graduating from his AOT court order in San Antonio, Eric, now thirty-six, tells me that court-ordered treatment revolutionized the management of his disease. He attributes his turnaround to the consistent and comprehensive care provided by a team of doctors, nurses, public defenders, case workers, licensed counselors, and the judge—an approach that’s called wraparound care. The specialist teams check in with each other every week in an effort to make sure that providers are coordinating their care, keeping their clients engaged in treatment, and helping clients reintegrate into the community. As in any therapeutic relationship, chemistry is everything. Smith accepted the intervention by Judge Kazen in part because of his warm and caring attitude. Judge Kazen makes no bones about the intensity of the program for participants. “We’re going to get into this person’s life,” he says. Even so, most cooperate.
Lawyer Brian Stettin, policy director at the Treatment Advocacy Center who crafted AOT law for twenty years, takes it a step further and says most people “enter the program happily and are not refusing treatment at the time the order is imposed. Typically, they are coming directly from a hospital stay, are reasonably stable, and see AOT as their ticket out of the hospital.”
Since the Bexar County program’s inception, Judge Kazen says that participants have spent more than two thirds fewer days in hospitals than their counterparts who aren’t enrolled. Eric has not been hospitalized since he graduated from AOT in 2012. He says that AOT “not only saved my life but changed the entire trajectory of what my life was like.” He has since transformed from someone who “wasn’t a participant in reality,” into a graduate student pursuing a master of social work degree, with the goal of becoming a licensed clinical social worker (LCSW). Far from an infringement on his civil liberties, Eric credits AOT for his own recovery and has since become a public spokesperson for leveraged treatment.
Today, forty-seven states and the District of Columbia authorize some form of AOT.4 Leveraged treatment reduces hospitalization, arrest and incarceration, homelessness, and violent acts associated with mental illness, as well as increasing treatment adherence and easing caregiver stress and strain.5 In addition to quality-of-life improvements, it also significantly reduces costs associated with the cycling of people with SMI through emergency rooms, psychiatric hospitals, and jails.6
Advocates say the programs save lives, reducing crimes both by and against people with psychiatric illnesses, as well as suicides. Critics say they return us to a day when psychiatrists arbitrarily decided who is normal and who isn’t, when diagnoses enforced by a decree from a judge or the state could land a person in an institution for life just for being different. Whichever side you’re on, it’s important to acknowledge that in AOT, the word assisted is a euphemism. Although the specifics vary by state, when the treatment is ordered by a judge, it never feels totally voluntary.
If you’re like me, alarm bells go off when you hear that a judge, even with the guidance of a mental health professional, can define the limits of mental health and force someone to take psychiatric medications. As a teenager, I was drawn to the eloquence of those who championed personal freedom over some culturally sanctioned definition of normalcy: Michel Foucault, R. D. Laing, and a personal favorite of mine, American psychiatrist Thomas Szasz, MD. In his landmark 1961 article for American Psychologist and his subsequent book, The Myth of Mental Illness: Foundations of a Theory of Personal Conduct, Dr. Szasz argued that the term mental illness refers to “undesirable thoughts, feelings and behaviors” rather than “a demonstrable biological process that affects the bodies of living organisms.”
So impressed by him, I wrote to Dr. Szasz at age eighteen, hoping for a job. But in 1975, he had no use for an undergrad seeking a summer internship. Instead, summer after my freshman year of college, I did research at Friends Hospital, America’s first private psychiatric hospital (and Merle’s third hospital), which was about two miles from my home. There I studied people with SMI who didn’t accept that they had an illness. (Although this was a hospital where, two years earlier, I had dropped Merle off for electroshock treatment, I kept the family secret, never telling anyone I worked with about my sister.)
One night, after a long day at the hospital, I attended the lecture of another humanist psychologist speaking to a packed house in Philly’s Rittenhouse Square. He’d written a number of brilliant books about psychotherapy that I’d read, reread, and revered. I loved what he said about how we could free ourselves from the scripts we live by despite how they constrain us and not be needlessly constricted, pathologized, diagnosed, and pigeonholed by the psychiatric establishment. Sitting there, I wondered how humanistic psychology might apply to my sister, who that year had jumped out the window and was now recuperating in my parents’ bed. At the end of his talk, in this groovy room of downtown intellectuals, I decided to raise my hand and ask a question. I dared not mention my sister but asked the esteemed author more generally about how his theories about psychotherapy might apply to people with psychosis. He responded that he’d never seen a psychotic. He believed psychosis was just a label imposed by psychiatrists who wanted to control and categorize their patients. Psychosis didn’t exist was a Szaszian view with which I was well acquainted. Had he never ventured onto a psych ward? Could he fathom what it was like to love someone like Merle, who, by the way, agreed that her diagnosis was a fallacy? I realized that, ingenious though he may have been, my role model didn’t know what the hell he was talking about. The “myth of mental illness” may sound good on paper, may even be fine if you’re treating the “worried well” or some neurotic college student like me. It is, of course, a social good to resist the deeply harmful labels imposed by authoritarian doctors over the course of our country’s history, whether labeling homosexuality a disease, as the APA did until 1973, or blaming “refrigerator mothers” for their children’s autism until the 1960s. But the “myth of mental illness” doesn’t wash for the many cases I have seen, nor help people who are suffering.
That said, the debate between coercive treatment and civil liberty is an essential one. What sways me toward the former in many situations is both my personal and my clinical experience. When it comes to their own family members experiencing mental illness and/or substance abuse, many of the most ardent civil rights advocates I know recognize the importance of guardianships, conservatorships, and court-mandated treatment to prevent more harm coming to their loved ones. I watched my sister die after a lifetime of what amounted to neglect in my eyes. There are no easy answers here: How can we respect personal autonomy among people who resist treatment and deny their illness? Where do we draw the line between giving everyone full civil liberties and allowing a psychotic disease to run the show? Is there a logical and proper role for the courts to help those who are being held captive by their own minds?
One person who makes a persuasive argument for therapeutic jurisprudence is Norm Ornstein, a noted political scholar and my colleague in mental health advocacy. His opinions on the matter stem from losing his son. Here is the story that he and his wife, Judy Harris, a Washington lawyer, generously shared with me:
Matthew Ornstein’s troubles began in 2005, when he had a psychotic episode at age twenty-four. Before then, he had been a warm, funny, popular, and empathetic young man. In high school, he won national championships in debate, then went on to excel at Princeton. After graduation, he moved to Hollywood with the dream of becoming a writer and stand-up comic, co-creating a television show for the National Lampoon Network that VH1 was considering picking up. Then, all of a sudden (or so it seemed at the time), he became withdrawn and occasionally delusional, alternating between deep depression and euphoria. His emerging illness soon took on a religious quality.
Not long after the onset of his disease, Matthew refused to stay in a hotel room with the number six, a symbol of the devil, on the door and, because no other room was available, wound up sleeping in the car. On another occasion, he drove all the way from Washington, D.C., to the outskirts of Boston, for the wedding of a college friend, but when he noticed that the license plate on the car in front of him contained sixes, he turned around, drove all the way back to Washington, and then set out once more for Massachusetts.
Despite his increasingly bizarre behavior, Matthew did not think he was sick. Instead, he believed that he had done something to anger God, so God had “put him in the penalty box,” taking his soul and leaving his body behind while deciding whether to come for Matthew’s body next or return his soul. Matthew spent the next ten years trying to redeem himself and earn back God’s love through strict religious practices and acts of charity. He rejected out of hand the notion of mental illness, believing that was just a construct meant to constrain behavior that society deemed unacceptable.
After his first psychotic episode, Matthew’s life in California deteriorated and he moved back in with his parents on the East Coast. He agreed to see a few doctors in an attempt to allay their concerns, but despite their ample resources and extensive network of knowledgeable friends and colleagues, his parents were unable to find a doctor with more than a passing interest in working with Matthew once he made clear to them that under no circumstances would he take medicine. He believed that God would deem treatment with medications as “taking the easy way out,” which would impact God’s judgment about whether to return his soul.
His family vacillated between pity and protection, tough love and unconditional love.
After eighteen months of useless doctors’ visits, Norm found Wayne Fenton, MD, a prominent psychiatrist who served as an associate director of NIMH and maintained a part-time private practice. Recognizing that it was senseless to expect seriously ill individuals to keep weekly appointments in an office, Dr. Fenton met his patients where they were, both figuratively and literally. In Matthew’s case, that meant at home in bed. For about nine months, Dr. Fenton would come to their house around nine or ten at night and Matthew would shout down, “Is he here again? I’m not seeing him, I’m not seeing anybody.” Dr. Fenton would go upstairs anyway and the two would wind up talking for two hours. Their therapeutic relationship seemed to be helping. Judy tells me that Matthew appeared to be bonding with Dr. Fenton. “He would come downstairs to dinner after his sessions with the doctor, even though often it was close to midnight, and he was more talkative with us on those occasions.”
Then, in September 2006, Dr. Fenton was beaten to death at age fifty-three by a nineteen-year-old with schizophrenia who had stopped taking his medication. Dr. Fenton had agreed to see that young man, another doctor’s patient, on Labor Day, at a hastily scheduled visit in an office building that was all but deserted because of the holiday. (This horrific incident is yet another reason many psychiatrists avoid taking on patients with SMI despite the reality that the patients are far more likely to be the victims of violence than the perpetrators.7)
Afterward, Matthew saw a few other mental health professionals intermittently (so long as they didn’t prescribe medication), but he never again bonded with any practitioner. His mental health continued to decline, and his parents grew more frantic. Early one morning in 2009, the mother of a young woman Matthew had known since elementary school called to tell Judy that Matthew had been obsessively attempting to reach her daughter on her birthday by sending urgent emails and texts throughout the previous night. Judy called the doctor Matthew had been seeing on occasion and asked him to meet her at the family home, where he had been living alone. The doctor working with the family had suggested to his parents that changing Matthew’s environment by moving him out of his childhood home might be helpful. Although they had moved to a flat downtown, they had not yet successfully convinced him to join them. But when Matthew opened the door, Judy deeply regretted having let him live alone.
Matthew was thin and disheveled, the house in total disarray, strewn with empty bottles and cans, old pizza boxes, and half-filled food containers. He agreed to let his mother in, on the condition that the doctor leave, and that she join him in the basement. He had a copy of Anne Frank’s The Diary of a Young Girl and a diary that Judy’s mother, who had escaped the Holocaust, had written at around the same age. Matthew told her: “We’re going to commemorate the children who died in the Holocaust. Sit with me. We’ll read a line from Anne’s and then Grandma’s diaries,” and then he read the names from a list he had, took a puff on a cigarette, and put it out on the carpet.
Judy obliged for a while, and then, saying that she needed to call her office to tell them she wouldn’t be coming to work, she went outside, phoned the doctor, asked him to call the police, and then returned. When two police officers arrived, Matthew willingly left with them. After the few days of confinement permitted by law on an emergency basis, the doctors at the hospital applied for a court order enabling them to keep Matthew for treatment, arguing that he was an imminent danger to himself, due to malnourishment and dramatic weight loss from not eating or sleeping.
Before the hearing to commit, Judy was assured by the doctors, much to her great relief, that her testimony wouldn’t be needed. Based on that, she promised Matthew that she would not “testify against him.” But midway through the hearing, the hospital’s counsel appeared in the waiting room and told Judy that “the only hope of keeping Matthew in the hospital for treatment was if I went into the courtroom and testified as to what I had observed on the day I called the police. It was an impossible decision: on the one hand, I knew how badly Matthew needed help but, on the other hand, I had given him my word.” Judy convinced herself that if Matthew got treatment but never spoke to her again, she would be able to live with that—so long as he got better. But she will never forget the look in Matthew’s eyes when he saw her enter that courtroom, the tremor in his voice when he uttered the words: “Mom, you promised.” As result of the hearing, Matthew was held at the hospital—but was released just a few weeks later, after appealing to the court, through his lawyer, and successfully blocking the psychiatrists’ recommendation for forced medication. Matthew’s relationship with his parents never fully recovered.
In the four and a half years that followed, Matthew grew increasingly more paranoid and disconnected from reality as well as isolated, pulling further away from his friends and family, especially his parents, who he felt “never took his side.” He traveled the country, but his appearance, heavy smoking, and odd sleeping habits caused his neighbors to avoid him everywhere he moved.
In August 2014, Matthew’s parents were able to pinpoint his general location only through his phone, which was still on their family plan. Norm drew up a map of every hotel and motel with smoking rooms within a sixty-mile radius of that dot. They spent Judy’s birthday driving from one to the next until they found Matthew’s car in the parking lot of the fifty-ninth hotel on their list. They decided not to tell Matthew that they knew where he was, terrified that he would ditch his phone and disappear again. Instead, they tried to reassure themselves that Matthew was in a safe place: a safe hotel, with free breakfast and housekeeping services. Nearly every weekend they made the six-hour round-trip to check on him (“Had his draperies opened? His car been moved?”) and they hired a detective to keep a lookout when they could not.
Matthew would still occasionally respond to his parents’ texts and messages. But in 2014, he remained silent during the December holidays. By New Year’s Day 2015, Norm and Judy had grown increasingly concerned. On January third, they drove for the last time to the motel in Newark, Delaware, that they had been regularly visiting without Matthew’s knowledge, arriving at about five o’clock that evening. This time, a squad car was parked outside. Matthew was dead.
During Matthew’s junior year of college, which he’d spent at the University of Cape Town in South Africa, he and his roommate would venture out to remote areas to camp. They would sit and talk and marvel at the southern sky. A couple years before his death, Matthew had told his roommate that “whenever I’m feeling anxious or agitated, I set up our old tent and go inside it, and I can sort of feel the peace of those days in South Africa.” That peace was likely what Matthew was seeking when he pitched that very tent in his motel room and went inside with a book, his glasses, and a small Coleman lantern. The forensics suggest that he fell asleep, book in hand, glasses and lantern on, and when the lantern ran out of fuel, the propane tank that powered it emitted the carbon monoxide that killed him. A carbon monoxide detector sat on the nightstand, beside it an unopened pack of batteries.
When contemplating the legal provisions that hamstrung their ability to get help—Norm says he viewed his son’s “freedom” as a “false freedom—false because [Matthew] was unaware of his own condition and the awful trajectory that it took him on.” The “true insanity,” as he wrote in the New York Times later that year, “is that our laws leave those who suffer to fend for themselves.”
Judy puts it even more succinctly: “My son died with his civil liberties intact.”
Marvin Swartz, MD, a professor of psychiatry at Duke University and a leader in the study of leveraged treatment’s efficacy, tells me that when it comes to civil rights concerns, “people are talking for [other] people.” Directly asking people with SMI and their families and clinicians their opinions on mandated care, as Dr. Swartz has done, reveals some unexpected and often unheard perspectives. “Life is full of trade-offs, and this is a trade-off,” he says. “Would they be willing to trade off the liberty of not getting treatment if they got the benefits of better housing, safer environment, not being psychotic, not being hospitalized? They say, ‘If this is gonna get me out from under a bridge, and I’ll have a warm place to live, I don’t care about this.’ Civil liberties isn’t the big thing to people living under bridges.”
When evaluating the costs versus benefits of coercive treatment, it’s also important to consider the results. In a study of New York State’s AOT law, Dr. Swartz says that he found a significant decline in the number of hospitalizations among participants. Part of this is likely due to the obligations of the care institutions within AOT jurisdictions. An important feature of Kendra’s Law, for example, is that it makes treatment agencies accountable for patient care. “As much as it commits the patient to treatment, it commits the providers to providing that treatment and not letting the patient get lost,” Dr. Swartz says. This entails a serious financial responsibility, but under these programs the judge, treatment team, family, and patient work closely for months or even years to provide the continuity of care that can create a real shift toward overall well-being. Setting aside the moral obligations that we, as a society, have to care for the sick, AOT makes good sense on a cost-savings basis alone. Schwartz’s data shows that enrollment decreased hospitalizations, improved medication adherence, decreased violent incidents, and reduced the health costs to taxpayers by 50 percent.
These programs boast encouraging results, but barriers to entry prevent more individuals and their families from benefiting. Awareness is one such roadblock. Although outpatient commitment laws have long been on the books in some states, I—a practicing psychiatrist working for nearly a decade to investigate the lives of people with SMI in this country—had never heard of AOT until recently. Where programs exist, they are designed to have the petitions brought by the treating doctor,8 hospital, or mental health authority. Although it’s rare, in some states, family members can themselves start the AOT process.
I asked Dr. Swartz to walk me through how I, as a family member, might have engaged Merle with AOT, had I been given the chance. “In our state [North Carolina] what you would do is go to the magistrate and swear out your position arguing that your sister is dangerous to herself or unable to care for herself and [therefore] at risk of dying of severe neglect. Once that’s issued by the magistrate, the police will pick her up and take her to the emergency room for an examination by a psychiatrist.” At that point, “and that’s the tricky thing,” he says, a psychiatrist would determine if she met the criteria for either inpatient or outpatient commitment.
I wouldn’t know where to begin. How would I feel about going to the city court to report my sister? What if they brought her to a hospital and the ED physician didn’t agree to commit her? Would it destroy my relationship with my sister, creating the same kind of damage that occurred between Matthew and his parents? AOT is no doubt complicated for family members to initiate on their own. Clearly, what is needed are more AOT programs that involve a network of health care providers and judges, so that burden no longer falls solely on the family for keeping their loved ones in treatment and preventing tragic outcomes.
Another more collaborative legal option for individuals and their families who want to plan ahead for a mental health emergency is the psychiatric advance directive (PAD). These written agreements serve as a formal legal document in which a patient outlines what types of care or treatment they consent to or refuse if they become psychotic and lose touch with reality. It can also be an opportunity to write up what approaches have and have not worked in the past so that providers have a more complete history to inform care decisions. PADs allow patients to have a say in their treatment even if they’re too ill to advocate for themselves in the moment—an approach that’s gaining traction nationwide. The New York Times reports that “early research and experience suggest that PADs, authorized by law in twenty-seven states and possible in others as part of conventional medical advance directives, could help some of the millions of people with serious mental illness cope better and guide doctors treating them.”9
Creating a PAD, which typically involves two forms, is something that an individual with SMI does when they are well. The first spells out treatment and care approaches while the second, a health care power of attorney form, temporarily grants a trusted loved one the authority to make decisions for an individual incapacitated by SMI. The necessary forms10 are best filled out with legal assistance but can also be completed more informally. Unlike AOT, these forms are not court-ordered and may not be enforceable in every situation or jurisdiction, but they do provide an explicit record of an individual’s wishes. What’s so beautiful about this approach is that it creates not only a crisis plan, but a crisis collaboration. This is particularly important when dealing with people whose illnesses often render them alienated and marginalized.
Whether we like it or not, jails, judges, and law enforcement are already intimately involved in overseeing and managing mental health care, and it is critical to know how to leverage the law for treatment, not punishment. The new paths to “therapeutic jurisprudence” offer individuals and families more options for avoiding the revolving door of insufficient care.