Mental Health Inc

by Art Levine

  “The system is perfectly perverse,” says seventy-four-year-old Dr. William McFarlane, the former director of the Center for Psychiatric Research at the Maine Medical Center, a professor at Tufts University medical school and a leader in developing effective treatments. Medicaid, the primary payer for public mental health services, spends freely on costly psychotropics for people who don’t need them and on programs that don’t work, such as “day treatment” outpatient care that usually mimics old-fashioned state hospitals. But it skimps on or denies funding for proven programs that go beyond a standard medical model to make a difference in people’s lives. McFarlane has created two pioneering evidence-based practices that harness the potentially positive impact of families on people with serious mental illness to reduce relapses by up to 400 percent and even first psychotic episodes to as little as 6 percent, thus preventing lifelong disability and endless years of schizophrenia.

  Yet such effective programs are rarely implemented by local, state or federal health-care agencies. This not-so-benign neglect continues despite the way McFarlane’s and other well-documented programs save lives, are supported by decades of research, dramatically cut costs and have won endorsements from the influential SAMHSA.

  “It’s sad that the American mental health field is still using [therapy] methodologies developed in the ’50s and ’60s. The results are abysmal,” he points out. “Insurance companies pay for a fifteen-minute med check but not much else, making hospitalizations almost inevitable. They cost an ungodly amount of money and the profit margins are huge.”

  “The public mental health clinics just give the typical outpatient therapies ‘supportive therapy’ that doesn’t work, and when they fail, as they usually do, it doesn’t cost them if the patients go into the hospital,” he continues. “And then the hospitals make a ton of money off them. If the clinics actually implemented them, they wouldn’t see a dime in savings.” And why should they care personally about long-run savings to the larger system? Some executives at top-paying Medicaid-funded nonprofits earned as much as $10 million a year—while the then-CEO of New York’s Institute for Community Living, Peter Campanelli, pulled in as much as $2.8 million annually in 2011 for his program providing housing and other services to the mentally ill. So there wasn’t much extra incentive to work harder training people to provide intensive, time-consuming programs.

  As for the federal-state Medicaid programs that pay for most of it, those officials are too mired in turf battles, opposition from health-care providers resisting change and bureaucratic inertia to take action. As McFarlane and others see it, for the lead federal agency, the Centers for Medicare & Medicaid Services, “It’s perfectly obvious that CMS hasn’t done anything to support evidence-based practices.” He says federal officials didn’t even stir themselves to start raising awareness about them “until they were all caught flat-footed by the massacres [by crazed gunmen like Adam Lanza and James Eagan Holmes],” while still doing substantively little to apply them.

  Yet “evidence-based practices” still became a mantra that federal mental health leaders would invoke from time to time for PR purposes, but few clinic directors today are paying any attention.

  • • •

  TAKE A LOOK AT AN UNLIKELY REVOLUTION IN THERAPY THAT WAS TAKING place a while ago inside a mental health clinic in a small town in south Maine, a snapshot in time from the early days of the SAMHSA-supported programs for people with serious mental illness. Its success ultimately helped lay the groundwork for something previously unimaginable: preventing some people from developing schizophrenia at all.

  About twenty people—patients with schizophrenia and their families—are sitting in a circle of folding chairs, shooting the breeze about the Red Sox and their holiday weekends. On the walls of the classroom, there are a few heart-shaped collages with homilies reflecting the spirit of the group, such as “Stick with me through thick and thin.” The families have often been struggling to do just that for years, and now, after seeing their loved ones go in and out of hospitals, they’ve finally turned to this new multifamily “psychoeducation” group for information about the illness, mutual support, encouragement to take medications and other help. The group may be new—only five months old at the time—but it’s a treatment model that’s been proving itself in controlled studies for over thirty years. Yet only in the 1990s did it begin to spread and win recognition as perhaps the most effective family-based treatment—generally combined with carefully monitored medications—ever devised for any mental illness, reducing relapses to as low as 10 percent annually.

  This multifamily group (MFG) in Maine is being gently guided by two “facilitators,” clinical social workers Dawn Hardy and Marilyn Wanyo, but there’s no hiding the pain in the room. Tonight, Wanyo, a tall, low-key counselor who sees several of the patients privately at the clinic, soon steers the talk to the schizophrenia that has brought them together. “How have you been handling the illness in the last two weeks?” Wanyo asks. For now, Karen, an earnest thirty-five-year-old woman hospitalized twice in recent years, is remaining quiet, but will later tell the group how she has a calmer relationship with her parents and is looking to return to at least part-time work.

  As Wanyo passes a pencil as a signal for speaking to Mike, a short-haired former dockworker in his forties, who begins the “sharing” portion of the meeting, it becomes clear how intractable, but hardly hopeless, this illness remains for many—even as recovery remains a real possibility for all those given effective care. (The names of “Mike” and other patients have been changed to protect confidentiality.) His head is tilted down as he mumbles something about starting new medications, and then says what’s really on his mind: “I was thinking about hearing voices and having bad thoughts; a lot of them are true.” He adds, “The Devil’s on my case.” Karen nods in agreement, understanding well how her feelings about evil and the Devil had distorted her life.

  “This sounds really important,” Wanyo says, calmly turning to his parents for their views, unruffled by the patient’s ongoing delusions. His mother offers a more reassuring perspective: “He doesn’t seem as drugged as he’s usually been,” she says, while noting that he’s been experiencing medical side effects from new blood pressure medicine that he’s also been taking. “It all comes down to that I’m over the hill,” he jokes as the rest laugh; it seems like a throwaway line, but it’s actually a small breakthrough for him: he hasn’t participated much or shown any humor in previous sessions. (Wanyo, comparing his current status to the progress he made with her in individual therapy, later observes, “The patient is so much better.”) As each new person speaks, the sharing illustrates both the variations in the illness and the common bond between them.

  Later in the session, Wanyo and the group will devise solutions to a patient’s problem through a process of group brainstorming, with the therapist having just one of many equal voices worth hearing.

  For both clients and families, the family psychoeducation group means something special to them: a way to both learn about the illness and ease the isolation it imposes on them. In interviews later, its value becomes clearer. To Karen, “It was kind of scary at first being in a group, but it’s good knowing that there are other people suffering from the same problem who you can identify with.” And both she and her mother underscore the value of the treatment’s psychoeducation component; it not only explains the biological roots of the illness, freeing the family from blame, but also offers pointers to families on creating a calm, low-stress environment designed to defuse the often intense, hypercritical or overemotional family response to patients that’s known as “expressed emotion.” While avoiding the phrase “expressed emotion” or warnings to families about how it can lead to more relapses—and thus avoiding even more blame of families—the psychoeducation program does offer pointers on creating a calmer, less pressured environment.

  These findings and strategies led McFarlane to start wondering if the same insights could help younger peop
le with a genetic history of schizophrenia and who had troubling early warning signs—including feeling “presences” or hearing nearby voices—from developing full-blown schizophrenia altogether. He was encouraged by major research in Finland that found that children born to mothers with “schizophrenic-spectrum” illnesses raised as adoptees in intrusive, critical families were an astounding 800 percent more likely to develop schizophrenia—at a 13 percent rate across age groups. That’s compared to similarly genetically high-risk children raised in well-adjusted families, who developed schizophrenia at a 1.5 percent rate. “Their genetic background predicted nothing,” he says when accounting for the differences in families.

  Back in Maine, McFarlane and members of the family group found that a new muted atmosphere in families fosters recovery and helps avoid relapses. “I think my parents understand me better, and aren’t so apt to criticize me,” says Karen, who was living with them after she had to give up her own nail salon business a few years earlier. Her mother admitted at the time, “I didn’t understand the illness.”

  This shortcoming is remedied in part by the psychoeducation workshop that comes early in the program—reinforced throughout the course of treatment—which teaches the family that schizophrenia is a biologically based illness that’s continually affected by the social environment. “It’s a ‘biosocial’ illness,” says McFarlane, who created and studied the program for over two decades by that point. He points out that independent research shows that families that manifested high “expressed emotion” did not see schizophrenia as an actual illness amenable to treatment. As McFarlane notes, “They tended to feel guilty; they tended to work hard to correct the situation with everything from excessive attention to anger and criticism, especially when their efforts and concern failed to achieve improvement. High expressed emotion families were in a very real sense victims of lack of information. A principal cause for that kind of agony was professionals’ failure to inform, support and guide the family.”

  That’s an apt, high-toned description of the sort of hell Karen and her family went through. But thanks to the multifamily group, Karen and her parents—her mother, Martha and her father, Dan—had a better understanding of the illness and treated her in new, gentler, empathetic ways. After years of turmoil and madness and tears, it’s a hard-won understanding they would have welcomed earlier in their lives, but they didn’t get it until the summer of 2002.

  Karen always was a tense, troubled child in some ways, but no one thought she’d ever end up raving in a mental hospital about being the Devil. Growing up in a blue-collar Massachusetts city, her family’s hard work and savings permitted them to lead somewhat more affluent lives than some of their friends. Karen was one of three children of a hard-working schoolteacher (Dan) and an office administrator (Martha); she was a nervous, insecure kid without many friends. As a teen, she recalls that she “didn’t like school,” but doesn’t elaborate on that; there were few if any signs to forecast the breakdown that hit her when she was thirty. She had little in the way of outside hobbies or interests, but she was far from being crazy. Tensions mounted between mother and daughter when her parents finally retired in their mid-fifties, in 1991, in the house the father had largely built himself over several summers in Maine (while keeping another home in Florida). In Maine, home all the time now, her mother felt Karen’s touchy personality was making it difficult for Martha’s sons and grandkids to visit her, and, Martha told me, Karen was jealous of attention shown to others. For instance, when Martha’s grandson was born on the same day as Karen’s birthday, she began crying, complaining, “I can’t even have a birthday by myself.” Karen, in turn, remembers visiting her brother and new nephew for a subsequent birthday party and being resentful that “they didn’t care one way or another” about her birthday. The father was resentful of what he saw as Karen’s spendthrift ways—an issue that at the time caused some problems between the two.

  Over the next few years, Martha gradually began to feel that her control of the house was slipping away to her daughter, who still lived at home. Meanwhile, Karen’s business, which she launched in 1991 when she was twenty-five, grew more successful (though she never earned more than about $35,000 a year). Eventually, Martha felt, “It wasn’t my house anymore,” and she and her husband moved out to an apartment owned by a son in another part of town. Karen was left alone, and it’s likely the troubles began there, adding stress to what most scientists believe is an innate biological vulnerability.

  At first, Karen enjoyed the new freedom she had, sprucing up the place, repainting the walls white, bringing in new rugs, and getting rid of some of her parents’ items. But the town was, Martha said, a cold and unfriendly place, and Karen would call, sometimes late at night, about being lonely. In the wintertime, when her parents were away in Florida, she really had only one friend, who was often busy with a husband. Karen was either working or staying by herself in the house, and so the isolation mounted.

  About this time, Karen became more religious, attending a Catholic lay Bible study group, sometimes quoting the Bible to her mother when they had arguments. She even went on a religious retreat, developing an unrequited crush on one of the priests there. Karen was impressed by the devotion of one of the kitchen workers, humbly peeling corn. Neither incident seemed like that much at the time, but when she visited the retreat again in the days before her subsequent breakdown a year or so later, they took on an outsized importance in her fevered mind. “Things were building, you could see it in her eyes that she was getting worse,” her father, Dan, said. But before that first breakdown in the summer of 1996, she seemed suddenly eager to make changes in her life and began planning a fun, life-affirming experience: a trip to Europe with some younger students at the college where she was taking night courses in business. She closed the shop for a month, paid all her bills ahead and prepared for an exciting new journey.

  But it became the first leg of a journey into madness. Then thirty, she felt estranged from the young college kids on the trip, and bizarre new worries began to occupy her mind. Her flight to Italy was on a TWA flight, and on the way over she began ruminating on the possibility that she had caused the crash of another TWA flight to Paris a week earlier. She kept the thought to herself, although she didn’t even think it was crazy, and remembers a lot of that stressful time: “Everything was piling up on me, and I had a lot of guilt.” Over what? She’s not specific about it, nor was there any rational reason for that feeling, but she notes that in the prayer group she’d begun going to, “There was a lot of talk about the Devil, and somewhere along the line, I became more interested in the Devil than in God.” She didn’t become a Satanist or anything like that, but after she returned from her trip to Europe, she gradually became convinced that she herself was the Devil.

  The paranoia and delusions became more intense during and after a brief visit to the Catholic retreat. According to her mother, Karen left the retreat in Massachusetts feeling intensely guilty about her crush on the priest. And when that humble kitchen worker greeted her by saying, “Long time no see,” Karen recalls, “It freaked me, wicked.” She barely knew the person, and there was something about his greeting that struck Karen as eerie, too intimate and, perhaps, part of a conspiracy. On the long trip back to Maine by herself, she wept the whole way, and strongly felt that “I didn’t know where I was supposed to be.” It was a feeling of being “out of sync” with life and at a crossroads facing choices she couldn’t quite define.

  She showed up at her family’s apartment, upsetting her mother with all her crazed talk about sin. “She started talking about the Devil, that she was bad and evil,” Martha recalled. At night, Karen couldn’t sleep, and they’d stay in the same bed, Martha holding her hand as Karen wept. “I didn’t know what to do,” Martha said. “I thought she was putting on an act; I thought she was being a spoiled brat.” Martha felt Karen was trying to manipulate them with a “guilt trip” so that the two parents wouldn’t go back to Florida. After a fe
w days of Karen “not making any sense,” Martha recalls, she asked a friend who was a registered nurse to meet with her daughter, and after a few hours of talking, the nurse recommended that she should be taken to an in-patient mental health facility then known as the Pavilion in Portsmouth, New Hampshire.

  Once there, she was given medication, but she was discharged after about a week without being given a fair trial to see if the drugs could have much impact. During this hospital visit, she was diagnosed as having bipolar illness, and it wasn’t until after a subsequent hospitalization in Maine two years later that she was told she had a form of schizoaffective disorder, or depression with psychotic symptoms. In any case, after a few days in the Portsmouth hospital in 1996, the psychiatrist there recommended that she receive shock treatments, a decision both her mother and daughter eventually felt was too hasty, and Karen continued to return on an outpatient basis for the treatments, a total of six times.

  Karen also recalls the group therapy sessions at the hospital, and how they differed from the multifamily group she went to in Maine. “Your family was with you in Maine, and because it’s a long-term group, we got to know each other. In the hospital people came and went,” she says.

  In the two years after her shock treatments, she would go on and off her medicines, worrying her family. But for a while, her delusional symptoms were kept under some control by the passage of time, periodic use of medications and the sheer effort of Karen’s will: “I had to keep talking to myself and say, ‘I don’t think I’m evil.’” But she had trouble getting along with customers at work, sometimes throwing someone out in anger, and she couldn’t get along, either, with the women in a “Women Alone” support group she joined at the suggestion of her mother. Part of the problem was Karen’s belief that they were engaged in an evil conspiracy to somehow use her in some nefarious spiritual way. After a blowup with two of the women in the group, she got so angry with them that she scrawled “BITCH” and “I HATE YOU” on their cars with lipstick. The next day she wrote a letter to the leader withdrawing from the group and asking for her money back—and then made plans to hang herself.