A former sufferer discusses mental-health treatment and the ethics of coercion.
At first, I thought the auditory hallucinations were a religious experience, like Joan of Arc receiving private messages from the divine. Voices from the past sent me telepathic transmissions: a dead grandmother, a favorite professor, and a teenage boyfriend. The voices resonated in my skull as if I were wearing headphones. The Internet was full of stories of ESP and telepathy fueling my faith in the paranormal.
It was August 1998, I was twenty-eight years old and I had just returned from a trip to Hawaii with my husband and two very young children. The jet lag and constant breastfeeding wore me down and sleep eluded me. Several weeks passed with just catnaps at night and the frenetic duties of a young mother during the day.
About a week into what turned out to be a psychotic break, the voices took a frightening turn. They told me the enormous 1920's house I had just purchased was haunted by demons. I went on a frenzied mission to open every window and screamed prayers to exorcize the house of the evil presence. The voices started to tell me I had telekinetic powers. Hit men were looking for me. It is important to note that I was not using street drugs before or during my psychosis. I was breastfeeding; cream cheese brownies were my only vice.
My two Siamese cats appeared with phosphorescent blue eyes and I suspected the devil possessed them. I confessed my fears to my neighbor Karen, and my behavior set off her professional sirens. She was a part-time psychology professor and she knew something was amiss.
She called my husband. They discussed what I had been up to in the past few weeks. It was clear I needed immediate help. Karen scooped up the kids. My husband drove me to the emergency room. I couldn’t be convinced to go on my own because I was experiencing anosognosia, or a psychotic individual’s poor insight into his or her own condition.
In the ER they listened to my stories and decided hospitalization was the best option. They put my arms and legs in restraints and wheeled me through the hospital’s underground tunnels. My headphones turned on again and God spoke to me and told me I was in the right place. Once in the psych ward, I was given a shot of anti-psychotic medication. That night’s sleep was the best one I had in ages. It was clear to the panel of doctors and residents who interviewed me the next morning that I was experiencing a psychotic break, otherwise known as an acute manic episode.
While I slowly became a compliant patient who trusted my family, friends and medical professionals, many individuals who experience psychosis do not trust their loved ones or doctors for many years. Their insurmountable anosognosia leads them to believe that the visions and voices they experience are the truth. Suspicious of authority, they follow the runaway narrative in their own head.
For those individuals who are not so unlike me, government-issued assisted outpatient treatment (AOT) offers the best solution following an initial psychotic episode. The compassionate care offered in an AOT provides the ideal conditions for recovery for many individuals following a period of psychosis, irrespective of income. In retrospect, I honestly believe that enrolling in a government-sponsored program would have speeded my own recovery. Private insurance in the 1990's simply wouldn’t, or couldn’t, do enough for me during the crucial six months following my psychotic break. Parity law requiring insurance companies to provide more appropriate mental health coverage has improved care over the past decade. Still, private insurance’s obligation is sorely lacking.
Many of California’s 58 counties are considering implementing Laura’s Law, AOT legislation passed in 2002 that gives county governments the power to assign acutely mentally ill individuals to AOT programs even if they balk at government intervention. The law is named after Laura Wilcox, a 19-year-old who was working at Nevada County’s public mental health clinic. On January 10, 2001, Scott Harlan Thorpe, a 41-year-old patient who resisted his family’s attempt to seek treatment, shot her and two other people to death.[i]
I like to skate around my own violent thoughts and actions when I tell my tale. My husband reminds me that my actions did appear violent to our children. Having a mother throw a carton of orange juice on the kitchen floor with all her might is not technically child abuse, but it sure is frightening to a young child. I was burning family photos smeared with peanut butter over the Weber grill. Was the house going to get the torch next?
Today, the violence and victimization of the mentally ill is big news in Orange County, California. In 2011 there were at least two instances where the controversial legislation Laura’s Law could have saved lives. The headlines are filled with the heartbreaking stories of Kelly Thomas and Scott Dekraai, men who were clearly suffering from mental illness. Thomas is the schizophrenic man beaten by rogue Fullerton police officers who subsequently died and Dekraai is the mentally ill man who perpetrated the Seal Beach mass shooting. Thomas and Dekraai needed legislation like Laura’s Law to coerce them into treatment. With this legislation, the families could have cried “intervention” and the county would have given them the muscle to back it up.
I attended a heartbreaking Fullerton City Council meeting where protesters came to speak against the actions of the Fullerton police officers that lead to Thomas’s death. Citizens overflowed from the city hall chambers into the lobby of City Hall. Demonstrators and camera crews milled around in the parking lot outside. Thomas’s stepmother spoke about the pain her family felt because they could not get him the medical help that would have eased his psychosis and resulting homelessness.
In the cases of Thomas and Dekraai, their families knew they were over the brink, but legally they couldn’t do a thing. These men had liberty, but no quality of life. Their own lives, not to mention those of the community, would have been vastly improved if they consented, or were legally obligated through therapeutic jurisprudence, to participate in an AOT.
The best AOT programs look at whether an individual is a danger both to themselves and the public. A person can be admitted before the police become involved if professionals suspect their condition might deteriorate into precarious territory. Forty-four states permit the use of outpatient commitment. A patient’s participation in an AOT promotes long-term voluntary compliance with treatment.
If I were a part of an AOT in the late '90s, I would have been required to see a doctor monthly, or even weekly, if needed. I would have seen a specially trained Personal Service Coordinator (PSC) up to twice daily, if needed. I would have understood how to take my medication correctly from the outset. The PSC would have come to my home and even arranged transportation to visits with an MD, if needed. My family lived 3,000 miles away – we moved during my second pregnancy due to the lure of a corporate relocation package – and could not come to my aid on a regular basis.
After my hospitalization in 1998, the hospital MDs selfishly steered me into a clinical trial and I saw an inexperienced grad student, not an MD or PhD, periodically to dispense unproven medication. No one at the Mood Disorders Clinic at Case Western Reserve University in Cleveland, Ohio even suggested I seek talk therapy for months. At first, I was confused and thought my psych meds were “as needed” and didn’t take them daily, despite the instructions on the bottles. The only pill I had ever taken regularly prior to that was a prenatal vitamin. Psychosis, of course, broke through. I had money and insurance, but I simply did not grasp medication management. For a moment there, the psychiatrists thought I was schizoaffective, a disorder featuring uncontrollable delusions and paranoia. Later professional assessment ratcheted me down to a mere bipolar, which is a far more treatable chemical imbalance.
My private insurance didn’t offer daily supervision to me, nor would I have sought this sort of medical obligation in my distorted state of mind. I might have not needed the coercion of a court order if the long-term benefits of participating in an AOT were explained to my husband and me. Despite the volatility of my own situation, no one offered us any sort of comprehensive mental healthcare package.
Instead, I sat alone in my five-bedroom home for six months, sketching and listening to old Pete Townshend CDs and crying a lot. As the trailing spouse of a relocated executive, I had no circle of friends in Ohio who knew the “real” me. I know I would have recovered more quickly and understood my condition better if I had been obligated to participate in group therapy on a regular basis and had a counselor at the ready. Under an AOT, group and individual therapy is provided as much as the patient requires.
Elyn Saks, a noted authority on mental illness legislation, and Orrin B. Evans, Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California, suggested in Saks's 2003 law journal article, “It makes sense not to honor the choices of the incompetent. They do not understand what is at stake in their decisions, nor can they appreciate or reason with the information. We cannot rely on the incompetent to know how to protect their own interests.”[ii]
Civil rights be damned, I needed the help an intensive six-month AOT offers. I was incompetent and my reasoning was very distorted. I cared for my kids poorly and I was no fun to be around. It was a year where laundry created mountain ranges in the basement, children went without baths, and filthy dishes beckoned the ants. For nearly a year, my young ones received none of the creative motherly interaction that young minds need to develop properly. I will always wonder if my youngest child’s mild learning disability is due to benign neglect as a toddler. People gave me books to read to understand what had dulled my cognitive abilities -- and I couldn’t concentrate well enough to read them. An unquiet mind cannot digest “An Unquiet Mind.”[iii]
Although AOT laws are controversial with regard to civil liberties, I subscribe to the “thank-you theory.”[iv] In essence, once a patient is correctly medicated and is able to reason, they will have gratitude that their ability to think clearly is restored. While some patients look regretfully, and even angrily, back at their past psychiatric inpatient and outpatient care, I retroactively endorse the bulk of the inpatient and outpatient treatment I have ever received. I do not believe, as B.J. Ennis suggests in his book, that obligating a psychotic individual to consent to treatment is “an unwarranted extension of state power that creates a new class of prisoners of psychiatry.”[v]
If I had been given more rigorous government-sponsored medical care aimed at protecting the stability of my family and myself during the six months following my first hospitalization, I would be grateful. I would seem coherent for weeks; then my husband would lure me out to dinner. Instead of enjoying an evening out, I would find myself hiding in dark paranoia in the restaurant’s bathroom for the majority of the meal. Being in an AOT would have forced both me and my loved ones to acknowledge that I needed a full six-month “time out” from parenting and social obligations.
I was told to avoid street drugs and alcohol while my meds were being adjusted, and I complied. Pregnant or breastfeeding for the majority of my 20s, I didn’t have substance abuse habits to break. Granted, dumping a bottle of Beefeater’s gin down the backyard drain convinced that “evil spirits” possessed it was not the thinking of a rational person.
In the past 14 years since my psychotic episode, I have learned to be an obedient patient. I am what the law likes to call “self-binding.” If I had signed a settlement agreement like patients are asked to under Laura’s Law, I would have walked away with no criminal record and no court conservatorship. Essentially, I would have had the “One Free Shot” at an AOT that Saks supports.[vi] I do what I am told. I do drink moderately today, but not at a level that interferes with my cutting-edge antipsychotic medication. Obeying doctors does not mean that I do not exercise some control over my treatment. I weigh side effects, I adjust dosages, and I switch brands under supervision. I may demand a newer pharmaceutical, but I never ditch my medication.
Patients like me are some of the loudest proponents of AOTs. Individuals who have hurt themselves or others in the past, and are fearful of doing so in the future, are vocal supporters of AOTs.[vii] The simple fact that I was driving erratically posed a threat to my children, the community, and myself. Psychotic women kill their own children far too often. How long would it have taken for the children to become the enemy in my distorted mind? I was running down that steep road way too fast.
So why has a decade passed since Laura’s Law was passed by the California state legislature with only Nevada County fully rolling out the program? There is that sticky wicket of civil rights. Libertarians and Scientologists hate the idea of government-imposed psychiatric care and lobby actively against it. Carla Jacobs, a founding board member of the Treatment Advocacy Center and former board of the National Alliance on Mental Illness (NAMI), states that some patients “may think it’s a totalitarian government’s attempt to control (them).”
Pacific Clinics in Los Angeles County piloted an AOT program in 2003, but it was quickly scrapped. In 2010, Countywide Resource Management reinstituted the AOT program in the county. The Los Angeles program is small. In 2010 only 18 individuals were enrolled, and they were all voluntary participants. The program is not airtight; one of the 18 was arrested during the time he was enrolled and five others went AWOL.
James Preis, Executive Director of Mental Health Advocacy Services in Los Angeles, likes the intensive package of services that an AOT offers, but he does not think the coercion of a court order is in anyone’s best interest.
“Full-service partnership programs are there to support a person even if they are making bad choices,” said Preis. “We need to package services in an AOT and offer them without the coercive element. There is no evidence that the court-ordered coercion works. People respond better when they are respected.”
Excessive court intervention simply is not the reality in Nevada County, where Laura’s Law has been successfully enforced since 2008. The fact is that a mere nine individuals have been court-ordered into an AOT in Nevada County since 2008 out of more than 200 who have been treated, according to Carol Stanchfield, Director of ACT and AOT programs with Turning Point Providence Center in Nevada County. This legislation’s therapeutic jurisprudence standards do not overreach in compelling the unwilling to receive treatment.
Additional criticism comes from fiscal conservatives who think that AOTs are too expensive. Research shows that they are not. In fact, AOTs reduce the expensive revolving door of hospital admissions and incarceration that plague the chronic mentally ill. Laura’s Law’s mandated social service worker-to-patient ratio of one-to-ten pays off. One result of Nevada County's adoption of Laura's Law in 2008 was to substantially reduce the numbers of emergency room visits and jail sentences.[viii] In Nevada County, for every dollar of government money spent, $1.81 is saved by reducing use of county-paid services.[ix] Myself, I barely skated away from a second hospital stay in 1998 due to my failure to comply with my prescribed meds.
Antipsychotic medication today is less mind-numbing than it was even a decade ago. Pfizer’s Geodon, one of the most promising new antipsychotic medications, became generic this spring. This is exciting news since my month’s supply of Geodon used to be cash priced at $1,200 a month. Even at the new generic price, a whopping $850, the pharmaceutical is beyond my budget without private health insurance. Mental health professionals tell me that Social Security Insurance will pay for a designer drug like Geodon. There is an upside to the high cost of this pharmaceutical, according to Stephen Morse of the UCLA School of Medicine; Pfizer is spending the most money of any single company on mental health medical research today. According to Morse, the downside is that wealthy companies like Pfizer woo physicians with huge gifts, which no doubt influences what ends up being written on the prescription pad.
At the risk of seeming Orwellian, I fantasize about a time that my preferred antipsychotic will be available in a three-month implant, similar to the controversial birth control Norplant. Clearly, it would be wrong to force a homeless person to use an implanted medication if they refused it on religious or moral grounds. Also, it would be clinically inadvisable to administer the hypothetical implant without first testing the medications orally. It might be better for all psychiatric patients if relying on our own memory to take pills daily was not required. A few times a year I fall asleep in bed watching late-night TV and I forget my meds. I have a splitting headache the next morning and look in my pill planner and discover my mistake. A day is wasted. Homeless people do not have the benefit of organizing their meds on the tidy counters of clean bathrooms.
I am fortunate that my husband has a fantastic job and we have continuously had private health insurance for the past 15 years. According to Jacobs, “There is nothing in Laura’s Law that precludes a person who is not on Medi-Cal or Medicare from receiving its services. The Department of Behavioral Health could provide a person who is not on those government benefits Laura’s Law services. Indeed, Nevada County has provided Laura’s Law services to individuals who are not qualified for government benefits by virtue of their income status.”
My current behavioral health-care needs are covered under California’s parity laws; I see a private neuropsychologist and psychiatrist as often as I need. I down an expensive cocktail of psychotropic medication every night. I also am a proponent of natural solutions such as high doses of fish oil and Sam-e, which complement my prescriptions, but cost me a bundle out of pocket. I am an active participant in my treatment; I go to lectures on mental illness, I lead a support group for other patients in Orange County, I read up on my medications, and I guard my precious sleep.
Despite a decade of diligence regarding talk therapy and medications, I have landed back in the psych ward twice in the past six years. My private practice psychiatrists have had unexpected results when transitioning me from one medication to another. In 2005, I experienced debilitating depression and ended up voluntarily driving myself to the psych ward. I returned in 2006 when I wanted to I crawl out of my own skin with anxiety so high that even prescription medication couldn’t manage it. Both times, I needed to adjust my medication and to adopt a more routine sleeping schedule. All of my psychiatric inpatient admits have been voluntary. My psychotic break has left me fearful of the dark recesses in my own mind.
Mental illness is just another life-threatening condition, like diabetes or cancer, which is helped by medical intervention. Society needs to erase the stigma of mental illness and see its treatment simply as “health care.” Hollywood also needs to stop typecasting the mentally ill as criminals. In fact, the treated mentally ill are slightly less dangerous than the general population.[x] Schizophrenia, the most serious of psychotic disorders, is not unusual in the U.S. population. Elyn Saks estimates that one out of every 100 people has schizophrenia. [xi] Up to half of schizophrenia patients don’t even understand they’re sick.[xii]
I’ve never been arrested. I passed the fingerprint and background check test to teach art to young children. My run-ins with the law are for petty traffic violations. I’m an asset to society, not a burden. Medicated, I’m a good wife and mother. Sure, I get really pissed off and irrational sometimes. Everyone does.
I became a peer-to-peer mental health support group leader in 2007. I listen to the minutiae of other people’s health-care challenges. Most mentally ill people who I’m lucky enough to know are law-abiding and contribute greatly to California’s rich cultural landscape; they are priests, they are CPAs, they are teachers, they are homeschool moms, and they are artists. They are my friends. They are your friends too. The patients that I meet in group therapy and private psychiatric wards want to be healthy. Setbacks are not a character flaw; the ebb and flow of moods are the nature of mental illness. Our state should help critical patients manage their own care better, and AOT’s are one way to do that. I want full-blown government-sponsored health-care for all illnesses, not just mental illness, but that is another issue for another essay.
I hate to think that others in the state of California who are in the haze of a psychotic episode might not be offered the help they need before they do harm. Comprehensive AOT programs and the thoughtful and cautious implementation of Laura’s Law in every county would help patients emerge from wandering the dark forest of psychosis and instability. County governments statewide must do what is best for the individual and the community by making intensive AOT services standard care.