by Art Levine
She bought herself a rope and called her mother at home in Florida, announcing her intention to kill herself. Her mother frantically called Karen’s psychiatrist but didn’t receive any response, despite repeated calls. So she called her son in another part of the Maine town and a next-door neighbor, asking them to go over and look in on her. Karen’s brother went over reluctantly, telling his mother blandly, “If she’s going to do it, she’s going to do it.” The neighbors, an elderly couple, dropped in briefly but didn’t offer much help or comfort. Karen drove herself to Counseling Services of Southern Maine’s emergency center, which referred her to a nearby hospital’s psychiatric unit. There, she was surrounded by what she felt were some screaming madwomen and was distressed when hospital staff made her take off her jewelry, an apparent preventive measure against suicide. At the hospital, the psychiatrist urged her, “You’ve got to take responsibility.” She notes, “When he told me to take responsibility, I thought he meant I had to take responsibility for my family”—not exactly the message someone in her condition wanted to hear. She also focused her mind on a bird outside the doctor’s office, and when she saw the doctor the next day wearing a tie with a picture of that bird, she knew it was part of a plot against her.
She only stayed for a few days: “I just pretended to get better to get out of there.”
She continued to work, with increasing dosages of antidepressant medication and a mood stabilizer, but her work lost any meaning for her, and she kept getting into arguments with her customers. Her parents came back to Maine early because she wasn’t getting any better and they now knew she shouldn’t be alone. “I felt she’d be better with us,” Martha said. The parents sold the Maine house in 1998—staying instead in the apartment when visiting—and Karen found a buyer for her business, almost giving it away for under $15,000. She continued to suffer from some milder, occasional delusions, but back in Florida and during her returns to Maine, her doctor recommended increased exercise, and she also got more socially involved, even joining a bowling league.
So when Marilyn Wanyo, her counselor during her summer visits to Maine, started a multifamily group in May 2002, she was somewhat open to participating, even though their summer return meant that they joined the group a few weeks late. Initially, she didn’t like it and was wary, but later came to enjoy going. “I finally felt connected with people,” she says. She also welcomed the opportunity to learn about others’ problems and help them as well. Karen says, “I could identify with their pain as far as dealing with the illness on a daily basis.” She adds, “Their dilemmas are not the same, but basically by taking care of each other, we’re making sure you’re taking medication and finding ways to console family members.” Problem-solving exercises, in particular, helped underscore their common ground: “It was nice when they talked about their situation, and you have the same situations,” she says.
She blossomed a bit by helping others, too. “She offered some good suggestions,” her father said of her participation in the problem-solving exercises. Moreover, her mother said, “By looking at everyone else’s problems, it brought her out of herself. With that disease, all they think of is themselves.” Karen, for instance, made a suggestion to one of the women in the group about checking with her doctor to find a counteracting medication to leg-shakes induced by the antipsychotic medication the woman was taking (Karen knew about the drug because a friend had a similar problem); the woman followed Karen’s advice, and her doctor indeed suggested such a drug. “People learned from you,” Karen says.
In addition, compared to other groups she’s been in at various times (including some for overeating and depression), “They weren’t judgmental, and the people were very patient,” Karen says. Her parents noticed that once Karen started to like the group, her mood improved, and as her willingness to return to the job she quit indicates, she was willing to take steps to repair ruptured relationships that she wouldn’t have taken before.
As for her parents, “the group did wonders for us,” Martha said when I met her. It offered some comfort, as well as insights into the illness. The psychoeducation component also inspired her to alter her behavior towards her daughter. “I made changes because I understood the illness,” she added.
When she was living with her family in Florida for most of the year, Karen wasn’t able to find the kind of support she found in Maine. To her, the primary benefit of the Maine group has been “the connections to people,” and she’s not sure she’ll find that kind of connection again in Florida, where multifamily psychoeducation groups are rare, if they exist at all.
• • •
IN THE YEARS SINCE I FIRST SPOKE TO KAREN, SHE VISITED NEARBY CLINICS in her county for conventional psychiatric care, went on and off various medications, and periodically ended up back in the hospital, lonelier and more isolated than ever. Some years later, she suffered a hard blow when her parents died, and she moved back to Maine by herself. Suspicious and fearful, apparently still struggling with her illness, she didn’t want to talk about what was going on in her life now. With both her parents dead, she was no longer eligible to participate in a multifamily psychoeducation program, even if she wanted to do so.
In January 2015, SAMHSA hailed “Recovery Month,” spreading the message that mental health services can enable people with mental illness to “live a healthy and rewarding life.” But by failing to actually spread the ongoing use of something perhaps even more valuable—programs that work—the agency’s sweeping promises don’t touch the lives of people like Karen who still need help.
McFarlane knew that there were many more people like Karen he and his programs could reach, even before they developed schizophrenia. He learned from the successes of the multifamily education model and sought to apply it more broadly, incorporating most of the elements of the best evidence-based treatments, such as supported employment teams, to improve work and school performance. The science of spotting early warning signs was well-developed by the time he took his program into the Portland, Maine, community in 2000; then with over $17 million in funding from the Robert Wood Johnson Foundation, he and his associates at the Portland Identification and Early Referral Program (PIER) launched it in six cities in 2006, from Glen Oaks, New York, to Sacramento, California. All six sites worked to “proactively” educate thousands of community members, health professionals and educators about the early signs of severe mental illness, then identified at-risk young people and got them into treatment. The program’s promising results reduced psychotic breaks within two years among high-risk patients to as low as 6 percent, compared to nearly 30 percent of high-risk young people who don’t get such treatment.
“If you want to identify someone at risk, then you would be talking with and educating the people who spend a lot of time with adolescents,” McFarlane observes. As part of researching the outreach program, this became the psychosis-prevention version of a community-wide diet, exercise or anti-smoking campaign.
It seemed like an admirable goal, and real people would be helped, but the underlying approach soon became an inadvertent part of an intellectual firefight over a proposed diagnostic code in the then upcoming American Psychiatric Association’s DSM-5 diagnostic manual. The proposed diagnosis of “psychosis risk syndrome” or “attenuated psychosis syndrome” was seen by its critics as a stalking horse for the overmedicating of kids. The opponents were led by Dr. Allen Frances, the former chairman of Duke University’s psychiatry department who led the committee that produced the previous diagnostic manual. “The results could be a disastrous misdiagnosis, stigma and exposure to unnecessary and harmful antipsychotic meds,” he said. “Preventing psychosis would be a great idea if we could really do it, but there is no reason to think we can.”
In the media firestorm that followed these sorts of attacks in 2012, the APA announced it was dropping the diagnosis (although a variation was buried elsewhere in the manual when it was published in May 2013). Dr. Allen Frances became something of a mainstream h
ero to those who saw psychiatry as invariably endangering people with needless, greed-driven medications. No matter that McFarlane only approved small, short-term doses of Abilify as a rare, last resort in his program, and he wasn’t publicly drawn into this raging debate, but his research programs then underway in six cities were entirely ignored in the media controversy. Looking back, McFarlane sums up Frances’s views with one word: “Poppycock.” He points out that Frances ignored a vast research literature on how psychosis could develop at any point over two decades in a young person’s life from age twelve onwards, let alone the research he and a dozen other clinicians have done worldwide, showing that prevention of this most frightening and disorienting of all mental illnesses was indeed possible. Yet in some ways, Frances had good reason to object to the pre-psychosis diagnosis being used because, if applied by most harried conventional clinics and psychiatrists who often dole out antipsychotic meds like candy, the dangerous prescribing he feared could well have spread to this new diagnostic category of patients.
Frances’s warnings about this controversial diagnosis, despite his ethically questionable research for J&J decades ago, are well worth noting. In a statement he emailed me, he argued, “The larger problem is the misuse of a diagnosis once it gets into the DSM. We already have massive overuse of antipsychotics in kids for questionable indications—and ‘pre-psychosis’ could make this worse. Researchers always see benefits of their pet projects, but don’t appreciate risks when applied sloppily in the real world.”
Even with these dangers, a proven program thwarting schizophrenia before its onset wasn’t something that could neatly fit into the usual ideological framework that pitted proponents and opponents of psychiatric medications against each other. When it comes to something as dangerous, elusive and complex as schizophrenia, it needed to be challenged by a program with nearly as many interwoven elements as the illness itself. Lives were at stake; over 10 percent of people with schizophrenia kill themselves; and those with untreated schizophrenia are three or more times as likely to commit violence than the average citizen, even though they are 1,000 percent more likely to become victims of violence. Either/or answers were not a solution, and like so much else that works in the mental health field, McFarlane’s early intervention successes would refute ideologues on all sides of the debates over psychiatry and medications. But as with most of the other evidence-based programs that actually help people recover by managing their illness, finding work or living independently, narrow-minded government agencies would often prove to be an obstacle to mentally ill people seeking meaningful and stable lives.
CHAPTER 16
Why Can’t We Just Do What Works?
BEFORE HE BECAME THE DIRECTOR OF THE DARTMOUTH PSYCHIATRIC Research Center and pioneered a work program that has transformed the lives of thousands of mentally ill people, psychiatrist Dr. Robert Drake was a graduate student in psychology in the 1970s who visited patients confined in mental hospitals and shoddy group homes. He saw them sitting around in listless boredom, doped up on the reigning antipsychotics Haldol and Thorazine, mired in lives without hope. “It was clear to me that people didn’t need to be in institutions for a long period of time. They just needed basic supports in the community,” he says. “That’s what we needed to do then and it’s still true. But we have been bombarded with polypharmacy that hasn’t changed course or helped people make an adjustment to live in the community.”
“They need good housing, they need a job, friends, social supports and they need families who know how to help them,” Drake adds. Though his views may sound like common sense or simple human decency, very few have access to most of those basics. A little over half the nation’s ten million adults and six million children with serious mental illnesses and emotional disturbances—including those adults suffering from schizophrenia and bipolar disorder—receive any kind of treatment in the course of a year. Yet less than 2 percent of adults in treatment are involved in the proven “psychosocial” programs such as Independent Placement and Support (IPS), the supported employment approach co-developed by Drake that can make their lives meaningful and help reduce relapses that lead to hospitalizations, jailings or suicides. About 85 percent of seriously mentally ill people don’t work at all, even though most have expressed a wish to do so—a higher rate of unemployment than with any other disability. A 2014 report by NAMI showed that unemployment rates were as high as nearly 93 percent in Maine for those in the public mental health system, and even in progressive California rates were at 90 percent.
In that context, the results of supported employment are especially astounding: More than two-thirds of people with serious mental illnesses not only land actual jobs but often keep them for years. The core practices and philosophy of IPS involve using a “job coach” embedded with a clinical team to provide guidance and to seek out employers with the goal of rapidly getting clients hired for truly competitive jobs. No one is excluded, regardless of how severe their mental illness or their addictions. The client’s goals are paramount, while staff ensures they retain all their benefits and don’t face cutoffs by earning too much. All this is at odds with the still-dominant approach of conventional vocational rehab, if that’s offered at all. Most seriously mentally ill people are seen as too sick to work outside of “sheltered workshops” or doing menial tasks inside a mental health program—and they supposedly need months, if not years, of “prejob” practice before they’re ready for work in the real world.
In contrast, Anne Peyer, the vocational services director of Cornerstone Montgomery, a full-service mental health program in Silver Spring, Maryland, observes, “We strongly believe that anyone who wants to work, can. It is a matter of finding the right job.” Their results prove the point: 69 percent of their six hundred youth and adult clients work.
One of Peyer’s clients is James, a bright man in his fifties, who had his first psychotic breakdown in the 1980s while enrolled as a medical student. James welcomes the independence and confidence work has brought him. With ten years at a health-care supply business in an administrative post, he says, “You feel like you matter to society and that you’re contributing. Every day, you have something to get up for and you get to know people: that’s really healthy for you.” And of course, there’s the paycheck: up to $25,000 a year in a thirty-two-hour-a-week job, thanks to promotions, while still retaining Medicaid and remaining on Social Security disability rolls, although payments are lowered as his income rises.
That’s a very different experience from when James was beset by the demons of schizophrenia and the strong belief, while volunteering in a nursing home as a student, that he was communicating telepathically with the patients. He stopped working, eventually dropped out of school and was so introverted he could barely talk to other people. After being hospitalized several times, James took part in day-treatment programs while suffering severe side effects (including muscle rigidity) from the older generation of antipsychotics. He was helped, despite its potential risks, by taking the then-new antipsychotic Clozaril in 2000, and felt the drug’s value for him was worth the weekly blood tests to check his white blood cell count. Clozaril helped him act on renewed stirrings of ambition and enroll in a community college for an associates degree in computer programming. “I always had goals,” he says. After another hospitalization, though, he was referred to Cornerstone Montgomery. There, counselors asked him questions he’d rarely heard before: “What do you want to do, and where do you want to go in your life?” Still not feeling quite himself, he searched for an administrative job and, by January 2005, landed a clerical position he’s held ever since. One sign of the job’s impact on him: “For a good ten years, I had trouble waking up. Once I got the job and showed up on time, I wasn’t exhausted.” Today he holds a more senior administrative job.
Cornerstone Montgomery values the program so much that each client has two counselors to work with: one to handle job-specific issues, the other to offer help with other life problems. For James, the
job coach has intervened a few times with bosses at work over the years, by, for example, asking for a supervisor to cut him a little slack over his work pace when some of his symptoms worsened. It’s up to each client to decide whether to disclose to employers that they have a mental illness history, but the health-care firm where James worked knew he worked with the program and scouted him after he was referred for an interview.
It was James’s first real job since dropping out of University of Pennsylvania medical school many years earlier. His therapist, who spoke to me with his permission, told me, “For someone with schizophrenia to go to work every day, it’s really difficult. It was very helpful for him and gave him more confidence. He’s done amazingly well: he’s gotten bonuses for never being late and he has a strong work ethic.”
James hasn’t escaped his illness, but he manages it—the real definition of recovery. After a brief hospitalization a few years ago, he still finds himself bothered periodically by obsessive thoughts. But with the help of the Cornerstone Montgomery staff, he returned to work. “I feel competent,” he says. “I feel like a good worker.” A reclusive, quiet man, he also has something he’s never really had before: a few close friends.
Indeed, when people like James see themselves as steady workers, rather than as patients in the mental health system, their employment also dramatically contributes to positive outcomes in other areas of their life. Over a ten-year period, the costs these clients incur for outpatient treatment and repeat hospitalizations are a stunning $166,000 less per person than for those enrolled in conventional treatment programs, according to a study co-authored by Drake in the journal Psychiatric Services. A year of supported employment services only costs an added $4,000 or so for each client, Drake notes.