“I think it is time for another hunger strike.”
—VINCE BOEHM, 2009
On July 28, 2003, six “psychiatric survivors” associated with MindFreedom International, a patients’ rights organization, announced a “fast for freedom.” David Oaks, Vince Boehm, and four others sent a letter to the American Psychiatric Association, NAMI, and the U.S. Office of the Surgeon General stating that they would begin a hunger strike unless one of the organizations provided “scientifically valid evidence” that the various stories they told to the public about mental disorders were true. Among other things, the MindFreedom group asked for evidence proving that major mental illness are “biologically-based brain diseases,” and for evidence that “any psychiatric drug can correct a chemical imbalance” in the brain. The MindFreedom Six had put together a scientific panel to review the organizations’ replies, an advisory group that included Loren Mosher, and they demanded that if the APA and the others couldn’t provide such scientific evidence, “you publicly admit to media, government officials, and the general public that you are unable to do so.”1
Here’s how the APA responded: “The answers to your questions are widely available in the scientific literature, and have been for years,” wrote medical director James Scully. He suggested that they read the U.S. Surgeon General’s 1999 Mental Health report, or an APA textbook coedited by Nancy Andreasen. “This is a ‘user-friendly’ textbook for persons just being introduced to the field of psychiatry,” he explained.2
Only the uneducated, it seemed, asked such dumb questions. But Scully had failed to list any citations, and so the six “psychiatric survivors” began their hunger strike, and when their scientific advisors reviewed the texts that Scully had referred them to, they found no citations there, either. Instead, the texts all grudgingly acknowledged the same bottom line. “The precise causes [etiology] of mental disorders are not known,” U.S. surgeon general Satcher confessed in his 1999 report. MindFreedom’s scientific panel, in its August 22 reply to Scully, observed that the strikers had asked “clear questions about the science of psychiatry,” and yet the APA had brushed them off. “By not giving specific answers to the specific questions posed by the hunger strikers, you appear to be affirming the very reason for the hunger strike.”3
The APA never answered that letter. Instead, after the Mind-Freedom group broke their fast (several started to have health problems), it issued a press release, stating that the APA, NAMI, and the rest of the psychiatric community “will not be distracted by those who would deny that serious mental disorders are real medical conditions that can be diagnosed accurately and treated effectively.”4 But it was clear to all observers who had won this battle. The strikers had called the APA’s bluff, and the APA had come up empty. It hadn’t come up with a single citation that supported the “brain disease” story it told to the public. The MindFreedom Six, along with their scientific panel, then issued a clarion call for help:
We urge members of the public, journalists, advocates, and officials reading this exchange to ask for straightforward answers to our questions from the APA. We also ask Congress to investigate the mass deception that the “diagnosis and treatment of mental disorders,” as promoted by bodies such as the APA and its powerful allies, represents in America today.5
The strike, noted MindFreedom executive director David Oaks, stirred articles in the Washington Post and the Los Angeles Times. “The purpose of the strike was to educate the public. It was about empowering the public and getting them to talk about these issues, which affect everyone. It was about challenging the corporate bullying of the [public] mind.”6
Lessons from a Hunger Strike
When I first thought about writing a “solutions” chapter, I figured that I would simply report on programs, both in the United States and abroad, that involve using psychiatric medications in a selective, cautious manner (or not at all), and are producing good results. But then I thought of the hunger strike, and I realized that the MindFreedom group had precisely identified the bigger issue at hand.
The real question regarding psychiatric medications is this: When and how should they be used? The drugs may alleviate symptoms over the short term, and there are some people who may stabilize well over the long term on them, and so clearly there is a place for the drugs in psychiatry’s toolbox. However, a “best” use paradigm of care would require psychiatry, NAMI, and the rest of the psychiatric establishment to think about the medications in a scientifically honest way and to speak honestly about them to the public. Psychiatry would have to acknowledge that the biological causes of mental disorders remain unknown. It would have to admit that the drugs, rather than fix chemical imbalances in the brain, perturb the normal functioning of neurotransmitter pathways. It would have to stop hiding the results of long-term studies that reveal that the medications are worsening long-term outcomes. If psychiatry did that, it could figure out how to use the medications judiciously and wisely, and everyone in our society would understand the need for alternative therapies that don’t rely on the medications or at least minimize their use.
In his 1992 book How to Become a Schizophrenic, John Modrow—who had been so diagnosed—wrote the following: “How then are we to help ‘schizophrenics’? The answer is simple: Stop the lies!”7 In essence, that’s what the MindFreedom Six were demanding, and as their advisory panel observed, this is a perfectly rational request. And that, I think, sums up the challenge that we, as a society, now face. How do we break up the psychiatry-and-drug-company partnership that, as we have seen, regularly does lie to us? How can we insist that our society’s mental health system be driven by honest science rather than by a partnership that is constantly seeking to expand the market for psychiatric drugs?
There is no easy answer to that question. But clearly our society needs to have a conversation about it, and so I thought that the rest of this “solutions” chapter should be devoted to interviews and investigations of alternative programs that could help make that conversation a fruitful one.
An Artful Form of Care
David Healy is a professor of psychiatry at Cardiff University and tends to psychiatric patients at the District General Hospital in North Wales, where he has been since 1990. His office is located a few feet from a closed ward, and naturally, he regularly prescribes psychiatric medications. Indeed, although he has come to be perceived by many in psychiatry as a “maverick,” he recoils at that word. In the 1980s, he notes, he researched serotonin reuptake in depressed patients. He participated as a clinical investigator in a trial of Paxil. He has authored more than a dozen books and published more than 120 articles, with much of his writing focusing on the history of psychiatry and the psychopharmacology era. His CV speaks of a psychiatrist and historian who, until he began writing about problems with the SSRIs, was embraced by the psychiatric establishment. “I don’t think I’ve changed much at all,” he said. “I think the mainstream has left me.”8
His thoughts on how psychiatric drugs should be used (and what they really do) have been deeply influenced both by his writings on the history of psychiatry and by a study he has conducted that compares outcomes of the mentally ill in North Wales a century ago with outcomes in the region today. The population hasn’t changed in this period, with around 240,000 in the area, and whereas all the seriously mentally were treated at the North Wales Asylum in Denbigh a century ago, today all psychiatric patients needing to be hospitalized are treated at the District General Hospital in Bangor. By poring over records of the two institutions, Healy and his assistants have been able to determine the number of people who were treated back then and the number treated today, as well as the frequency of their hospitalizations.
The common belief, Healy notes, is that the old asylums were bulging with lunatics. Yet from 1894 to 1896, there were only forty-five people per year admitted to the North Wales Asylum (for mental problems). Furthermore, as long as the patients didn’t succumb to tuberculosis or some other infectious disease, they regularly got better over the course of three months to a year and went home. Fifty percent were discharged as “recovered” and another 30 percent as “relieved.” In addition, the overwhelming majority of patients admitted for a first episode of illness were discharged and never again rehospitalized, and that was true even for psychotic patients. This latter group averaged only 1.23 hospitalizations in a ten-year period (that number includes the initial hospitalization).
Today, the assumption is that patients fare much better than they used to thanks to psychiatric medications. However, in 1996, there were 522 people admitted to the psychiatric ward at the District General Hospital in Bangor—nearly twelve times the number admitted to the Denbigh asylum a century earlier. Seventy-six percent of the 522 patients had been there before, part of a large group of patients in North Wales that cycle regularly through the hospital. Although the patients spent a shorter time in the hospital than they did in 1896, only 36 percent were discharged as recovered. Finally, the patients admitted for a first episode of psychosis in the 1990s averaged 3.96 hospitalizations over the course of ten years—more than three times the number a century earlier. Patients today are clearly more chronically ill than they were a century ago, with modern treatments apparently having set up a “revolving door.”9
“We have been surprised by how poor the five-year outcomes are today,” Healy said. “Each time we look at the current data, at the first batch of five-year outcomes [for a particular diagnostic group], we think, ‘God, that can’t be the case.’”
Their study sends a fairly clear message about how and when psychiatric medications should be used. “A bunch of people used to recover,” Healy explained, but if you immediately put all patients on medications, you run the risk of “giving them a chronic problem they wouldn’t have had in the old days.” Healy now tries to “watch and wait” before giving psychiatric drugs to first-episode patients, as he wants to see if this type of natural recovery can take hold. “I try to use the drugs cautiously in reasonably low doses, and I tell the patient, ‘If the drug isn’t doing what we want it to do, we are going to halt it,’” he said. If psychiatrists listened to their patients about how the drugs were affecting them, he concluded, “we would have only a few patients on them long-term.”
There it is: a simple prescription for using the medications judiciously. Once a physician realizes that many people who experience a bout of psychosis or a deep depression can recover naturally, and that long-term use of psychotropics is associated with increased chronicity, then it becomes apparent that the drugs need to be used in a selective, limited manner. Healy has seen this approach work with his patients, many of whom initially insist that they need the drugs. “I say to them, ‘We can do more harm than good,’” he said. “They don’t realize just how much harm we can do.”
Healing the “In-Between”
For a long time, western Lapland in Finland had one of the highest rates of schizophrenia in Europe. There are about 70,000 people who live there, and during the 1970s and early 1980s, twenty-five or so new cases of schizophrenia appeared each year—an incidence rate double and even triple the norm for other parts of Finland and the rest of Europe. Furthermore, those patients regularly became chronically ill. But today the long-term outcomes of psychotic patients in western Lapland are the best in the Western world, and this region now sees very few new cases of schizophrenia.
This is a medical success that has been decades in the making, and it began in 1969 when Yrjö Alanen, a Finnish psychiatrist who had psychoanalytic training, arrived at the psychiatric hospital in Turku, a port city in southwest Finland. At that time, few psychiatrists in the country thought that psychotherapy could help schizophrenics. However, Alanen believed that the hallucinations and paranoid utterances of schizophrenic patients, when carefully parsed, told meaningful stories. Hospital psychiatrists, nurses, and staff needed to listen to the patients. “It’s almost impossible for anyone meeting with these patients’ families to not understand that they have difficulties in life,” Alanen explained in an interview at the psychiatric hospital in Turku. They are “not ready” to be adults, and “we can help with this development.”10
Over the next fifteen years, Alanen and a handful of other Turku psychiatrists, most notably Jukka Aaltonen and Viljo Räkköläinen, created what they called the “need-adapted” treatment of psychotic patients. Since psychotic patients are a very heterogeneous group, they decided that treatment needed to be “case specific.” Some first-episode patients would need to be hospitalized, and others would not. Some would benefit from low doses of psychiatric medications (either benzos or neuroleptics), and others would not. Most important, the Turku psychiatrists settled on group family therapy—of a particularly collaborative type—as the core treatment. Psychiatrists, psychologists, nurses, and others trained in family therapy all served on two- and three-member “psychosis teams,” which would meet regularly with the patient and his or her family. Decisions about the patient’s treatment were made jointly at those meetings.
In those sessions, the therapists did not worry about getting the patient’s psychotic symptoms to abate. Instead, they focused the conversation on the patient’s past successes and achievements, with the thought that this would help strengthen his or her “grip on life.” The hope, said Räkköläinen, “is that they haven’t lost the idea that they can be like others.” The patient might also receive individual psychotherapy to help this process along, and eventually the patient would be encouraged to construct a new “self-narrative” for going forward, the patient imagining a future where he or she was integrated into society, rather than isolated from it. “With the biological conception of psychosis, you can’t see the past achievements” or the future possibilities, Aaltonen said.
During the 1970s and 1980s, the outcomes for psychotic patients in the Turku system steadily improved. Many chronic patients were discharged from the hospital, and a study of first-episode schizophrenic-type patients treated from 1983 to 1984 found that 61 percent were asymptomatic at the end of five years and only 18 percent were on disability. This was a very good result, and from 1981 to 1987, Alanen coordinated the Finnish National Schizophrenia Project, which determined that the need-adapted model of care developed in Turku could be successfully introduced into other cities. Two decades after Alanen and the others had initiated their Turku project, Finland had decided that psychotherapy could indeed help psychotic patients.
However, the question of the best use of antipsychotics remained, and in 1992, Finland mounted a study of first-episode patients to answer it. All six sites in the study provided the newly diagnosed patients with need-adapted treatment, but in three of the centers, the patients were not put on antipsychotics during the first three weeks (benzos could be used), with drug therapy initiated only if the patient hadn’t improved during this period. At the end of two years, 43 percent of the patients from the three “experimental” sites had never been exposed to neuroleptics, and overall outcomes at the experimental sites were “somewhat better” than they were at the centers where nearly all of the patients had been exposed to the drugs. Furthermore, among the patients at the three experimental sites, those who had never been exposed to neuroleptics had the best outcomes.11
“I would advise case-specific use [of the drugs],” Räkköläinen said. “Try without antipsychotics. You can treat them better without medication. They become more interactive. They become themselves.” Added Aaltonen: “If you can postpone medication, that’s important.”
It might seem that Finnish psychiatry, given the outcomes of the study, would have then embraced—on a national level—this “no immediate use of neuroleptics” model of care. Instead, Alanen and the other creators of need-adapted treatment retired, and during the 1990s, Finland’s treatment of psychosis became much more “biologically” oriented. Even in Turku, first-episode patients are regularly treated with antipsychotics today, and Finnish guidelines now call for the patients to be kept on the drugs for at least five years after a first episode. “I am a bit disappointed,” Alanen confessed at the end of our interview.
Fortunately, one of the three “experimental” sites in the 1992–1993 study did take the results to heart. And that site was Tornio, in western Lapland.
On my way north to Tornio, I stopped to interview Jaakko Seikkula, a professor of psychotherapy at the University of Jyväskylä. In addition to working at Keropudas Hospital in Tornio for nearly twenty years, he has been the lead author on several studies documenting the extraordinary outcomes of psychotic patients in western Lapland.
The transformation of care at Keropudas Hospital, from a system in which patients were regularly hospitalized and medicated to one in which patients are infrequently hospitalized and only occasionally medicated, began in 1984, when Räkköläinen visited and spoke about need-adapted treatment. The Keropudas staff, Seikkula recalled, immediately sensed that holding “open meetings,” where every participant freely shared his or her thoughts, would provide psychotic patients with a very different experience from conventional psychotherapy. “The language we use when the patient is sitting with us is so different from the language we use when we [therapists] are by ourselves and discussing the patient,” he said. “We do not use the same words, and we have to listen more to the patient’s ideas about what is going on, and listen more to the family.”
Eventually, Seikkula and others in Tornio developed what they called open-dialogue therapy, which was a subtle variation of Turku’s need-adapted model. As was the case in Turku, patient outcomes in western Lapland improved during the 1980s, and then Tornio was selected to be one of the three experimental sites in Finland’s 1992–93 first-episode study. Tornio enrolled thirty-four patients, and at the end of two years, twenty-five had never been exposed to neuroleptics. Nearly all of the never-medicated patients in the national study (twenty-five of twenty-nine) had actually come from this one site, and thus it was only here that hospital staff observed the longer-term course of unmedicated psychosis. And they found that while recovery from psychosis often proceeds at a fairly slow pace, it regularly happens. The patients, Seikkula said, “went back to their work, to their studies, to their families.”12
Encouraged by the results, Keropudas Hospital immediately started a new study, charting the long-term outcomes of all first-episode psychotic patients in western Lapland from 1992 through 1997. At the end of five years, 79 percent of the patients were asymptomatic and 80 percent were working, in school, or looking for work. Only 20 percent were on government disability. Two-thirds of the patients had never been exposed to antipsychotic medication, and only 20 percent took the drugs regularly.13 Western Lapland had discovered a successful formula for helping psychotic patients recover, with its policy of no immediate use of neuroleptics in first-episode patients critical to that success, as it provided an “escape valve” for those who could recover naturally.
Five-Year Outcomes for First-Episode Psychotic Patients in Finnish Western Lapland Treated with Open-Dialogue Therapy
Other psychotic disorders (N=45)
Never exposed to antipsychotics
Occasional use during five years
Ongoing use at end of five years
Never relapsed during five years
Asymptomatic at five-year follow-up
Functional outcomes at five years
Working or in school
Source: Seikkula, J. “Five-year experience of first-episode nonaffective psychosis in open-dialogue approach.” Psychotherapy Research 16 (2006): 214–28.
“I am confident of this idea,” Seikkula said. “There are patients who may be living in a quite peculiar way, and they may have psychotic ideas, but they still can hang on to an active life. But if they are medicated, because of the sedative action of the drugs, they lose this ‘grip on life,’ and that is so important. They become passive, and they no longer take care of themselves.”
Today, the psychiatric facilities in western Lapland consist of the fifty-five-bed Keropudas Hospital, which is located on the outskirts of Tornio, and five mental-health outpatient clinics. There are around one hundred mental-health professionals in the district (psychiatrists, psychologists, nurses, and social workers), and most have completed a nine-hundred-hour, three-year course in family therapy. Many of the staff—including psychiatrist Birgitta Alakare and psychologists Tapio Salo and Kauko Haarakangas—have been there for decades, and today open-dialogue therapy is a well-polished form of care.
Their conception of psychosis is quite distinct in kind, as it doesn’t really fit into either the biological or psychological category. Instead, they believe that psychosis arises from severely frayed social relationships. “Psychosis does not live in the head. It lives in the in-between of family members, and the in-between of people,” Salo explained. “It is in the relationship, and the one who is psychotic makes the bad condition visible. He or she ‘wears the symptoms’ and has the burden to carry them.”14
With most of the staff in the district trained in family therapy, the system is able to respond quickly to a psychotic crisis. Whoever is first contacted—by a parent, a patient seeking help, or perhaps a school administrator—is responsible for organizing a meeting within twenty-four hours, with the family and patient deciding where the meeting should be held. The patient’s home is the preferred place. There must be at least two staff members present at the meeting, and preferably three, and this becomes a “team” that ideally will stay together during the patient’s treatment. Everyone goes to that first meeting aware that they “know nothing,” said nurse Mia Kurtti. Their job is to promote an “open dialogue” in which everybody’s thoughts can become known, with the family members (and friends) viewed as coworkers. “We are specialists in saying that we are not specialists,” Birgitta Alakare said.
The therapists consider themselves guests in the patient’s home, and if an agitated patient runs off to his or her room, they simply ask the patient to leave the door open, so that he or she can listen to the conversation. “They hear voices, we meet them, and we try to reassure them,” Salo said. “They are psychotic, but they are not violent at all.” Indeed, most patients want to tell their story, and when they speak of hallucinations and paranoid thoughts, the therapists simply listen and reflect upon what they’ve heard. “I think [psychotic symptoms] are very interesting,” Kurtti said. “What’s the difference between voices and thoughts? We are having a conversation.”
No mention is made of antipsychotics in the first few meetings. If the patient begins sleeping better and bathing regularly, and in other ways begins to reestablish societal connections, the therapists know that the patient’s “grip on life” is strengthening, and that medication will not be needed. Now and then, Alakare may prescribe a benzodiazepine to help a person sleep or to dampen the patient’s anxiety, and eventually she may prescribe a neuroleptic at a low dose. “Usually I suggest that the patient use it for some months,” Alakare said. “But when the problems go away, after six months or a year, or maybe even after three years, we try to stop the medication.”
From the outset, the therapists strive to give both the patient and family a sense of hope. “The message that we give is that we can manage this crisis. We have experience that people can get better, and we have trust in this kind of possibility,” Alakare said. They have found that it can take a long time—two, three, or even five years—for a patient to recover. Although a patient’s psychotic symptoms may abate fairly quickly, they are focused on the patient’s “grip on life” and repairing his or her relationship to society, and that is a much bigger task. The team continues to meet with the patient and family, and as this process unfolds, teachers and prospective employers are asked to attend too. “It’s about restoring social connections,” Salo said. “The ‘in-between’ starts working again, with family and with friends.”
Over the past seventeen years, open-dialogue therapy has transformed “the picture of the psychotic population” in western Lapland. Since the 1992–93 study, not a single first-episode psychotic patient has ended up chronically hospitalized. Spending on psychiatric services in the region dropped 33 percent from the 1980s to the 1990s, and today the district’s per-capita spending on mental-health services is the lowest among all health districts in Finland. Recovery rates have stayed high: From 2002 to 2006, Tornio participated in a multinational study by Nordic countries of first-episode psychosis, and at the end of two years, 84 percent of the patients had returned to work or school, and only 20 percent were taking antipsychotics. Most remarkable of all, schizophrenia is now disappearing from the region. Families in western Lapland have become so comfortable with this gentle form of care that they call the hospital (or one of the outpatient clinics) at the first sign of psychosis in a loved one, with the result being that today first-episode patients typically have had psychotic symptoms for less than a month and, with treatment initiated at this early stage, very few go on to develop schizophrenia (the diagnosis is made after a patient has been psychotic for longer than six months). Only two or three new cases of schizophrenia appear each year in western Lapland, a 90 percent drop since the early 1980s.15
Tornio’s success has drawn the attention of mental-health-care providers in other European countries, and during the past twenty years, two or three other groups in Europe have reported that the combination of psychosocial care and limited use of neuroleptics has produced good outcomes.16 “This really happened,” Seikkula said. “It’s not just a theory.”
• • •
On my way back to Helsinki, I kept puzzling over this one thought: Why are the group meetings in Tornio so therapeutic? Given the outcomes literature for neuroleptics, I could understand why selective use of the drugs had proven to be so helpful. But why did open-dialogue therapy help psychotic patients heal?
During my two days in Tornio, I sat in on three group sessions, and although I don’t speak Finnish, it was nevertheless possible to gain a sense of the meetings’ emotional tenor and to observe how the conversation flowed. Everyone sat in a circle, in a very relaxed and calm manner, and before anyone spoke, there often was a split-second moment of silence, as if whoever was going to speak next was gathering his or her thoughts. Now and then someone laughed, and I couldn’t identify a time when anyone was interrupted, and yet no individual seemed to go on speaking too long, either. The conversation seemed graced by gentility and humility, and both family members and patients listened with rapt attention whenever the therapists turned and spoke to each other. “We like to know what they really think, rather than just have them give us advice,” said the parents in one of the meetings.
But that was the sum of it. It was all a bit mystifying, and even the staff at Keropudas Hospital hadn’t really been able to explain why these conversations were so therapeutic. “The severe symptoms begin to pass,” Salo said with a shrug. “We don’t know how it happens, but [open-dialogue therapy] must be doing something, because it works.”
A Natural Antidepressant
In the early 1800s, Americans regularly turned to a book written by Scottish physician William Buchan for medical advice. In Domestic Medicine, Buchan prescribed this pithy remedy for melancholy:
The patient ought to take as much exercise in the open air as he can bear … A plan of this kind, with a strict attention to diet, is a much more rational method of cure, than confining the patient within doors, and plying him with medicines.17
Two centuries later, British medical authorities rediscovered the wisdom of Buchan’s advice. In 2004, the National Institute for Health and Clinical Excellence, which acts as an advisory panel to the country’s National Health Service, decided that “antidepressants are not recommended for the initial treament of mild depression, because the risk-benefit ratio is poor.” Instead, physicians should try non-drug alternatives and advise “patients of all ages with mild depression of the benefits of following a structured and supervised exercise programme.”18
Today, general practitioners in the UK may write a prescription for exercise. “The evidence base for exercise as a treatment for depression is quite good,” said Andrew McCulloch, executive director of the Mental Health Foundation, a London-based charity that has been promoting this alternative. “It also reduces anxiety. It’s good for self-esteem, control of obesity, et cetera. It has a broad-spectrum effect.”19
In terms of its short-term efficacy as an antidepressant, studies have shown that exercise produces a “substantial improvement” within six weeks, that its effect size is “large,” and that 70 percent of all depressed patients respond to an exercise program. “These success rates are quite remarkable,” German investigators wrote in 2008.20 In addition, over time, exercise produces a multitude of “side benefits.” It enhances cardiovascular function, increases muscle strength, lowers blood pressure, and improves cognitive function. People sleep better, they function better sexually, and they also tend to become more socially engaged.
A 2000 study by James Blumenthal at Duke University also revealed that it is unwise to combine exercise with drug therapy. He randomized 156 older depressed patients into three groups—exercise, Zoloft, and Zoloft plus exercise—and at the end of sixteen weeks, those treated with exercise alone were doing as well as those in the other two groups.21 Blumenthal then tracked the patients for another six months, with the patients free to choose whatever treatment they wanted during this period, and at the end the patients treated initially with exercise alone were doing the best. Only 8 percent of those who had been well at the end of sixteen weeks had relapsed during the follow-up, and by the end of ten months 70 percent of the exercise-only group were asymptomatic. In the two Zoloft-exposed groups, more than 30 percent of the patients who had been well at the end of sixteen weeks relapsed, and fewer than 50 percent were asymptomatic by the study’s end. The “Zoloft plus exercise” group had fared no better than the “Zoloft alone” patients, which suggested that exposure to Zoloft negated the benefits of exercise. “This was an unexpected finding, because it was assumed that combining exercise with medication would have, if anything, an additive effect,” Blumenthal wrote.22
The Long-Term Benefit of Exercise for Depression
In this study by Duke researchers, older patients with depression were treated for 16 weeks in one of three ways, and then followed for another six months. Patients treated with exercise alone had the lowest rates of relapse during the following six months, and as a group, they were much less likely to be suffering from depressive symptoms at the end of ten months. Source: Babyak, M. “Exercise treatment for major depression.” Psychosomatic Medicine 62 (2000): 633–38. 100–11.
In 2003, when Britain’s Mental Health Foundation launched its exercise-for-depression campaign, it took advantage of the fact that general practitioners in Britain were already “prescribing” exercise to patients with diabetes, hypertension, osteoporosis, and other physical conditions. The delivery of this medical care requires physicians to collaborate with local YMCAs, gyms, and recreational facilities, with these collaborations known as “exercise-referral schemes,” and thus the foundation simply needed to get the GPs to start prescribing exercise to their depressed patients too. Today, more than 20 percent of the GPs in the UK prescribe exercise to depressed patients with some frequency, which is four times the percentage who did in 2004.
A “prescription” for exercise typically provides the patient with twenty-four weeks of treatment. An exercise professional assesses the patient’s fitness and develops an appropriate “activity plan,” with the patient then given discounted or free access to the collaborating YMCA or gym. Patients work out on exercise machines, swim, and take various exercise classes. In addition, many exercise-referral schemes provide access to “green gyms.” The outdoor programs may involve group walks, outdoor stretching classes, and volunteer environmental work (managing local woodlands, improving footpaths, creating community gardens, etc.). Throughout the six months of treatment, the exercise professional monitors the patient’s health and progress.
As might be expected, patients have found “exercise-on-prescription” treatment to be quite helpful. They told the Mental Health Foundation that exercise allowed them to “take control of their recovery” and to stop thinking of themselves as “victims” of a disease. Their confidence and self-esteem increased; they felt calmer and more energetic. Treatment was now focused on their “health,” rather than on their “illness.”
“The fathers of medicine wouldn’t be surprised about what we are doing,” McCulloch said. “They would say, ‘Hasn’t science gone any further? Diet and exercise? This is what is new?’ If they could travel in a time machine, they would think we were mad, because people have been saying these things for thousands of years.”
These Kids Are Awesome
The children who end up living at Seneca Center in San Leandro, California, have come to the last stop for severely disturbed youth in the northern part of the state. The children, five to thirteen years old, have usually cycled through several foster homes and have had multiple hospitalizations, and their behavior has been so difficult that there are no foster homes or hospitals left that want to see them again. In bureaucratic terms, they are “level-14” kids, which is the designation given to the most troubled kids in California, but since these children have flunked out of other level-14 facilities, they are better described as “level-14-plus-plus” youth. Counties pay Seneca Center $15,000 a month to shelter a child and, not surprisingly, when the children arrive at the center, most are on heavy-duty drug cocktails. “They are so drugged up that they are asleep most of the day,” said Kim Wayne, director of the residence program.23
And then their lives begin to change dramatically.
I visited one of Seneca Center’s two residences for younger children in the summer of 2009, and when I entered, here is what I saw: a young African American girl wearing headphones singing along to a Jordin Sparks song; a second slightly older African American girl sitting at the kitchen table, leafing through photos of their recent group trip to Disneyland; and two African American boys at the table goofing around with each other and racing to see who could drink a glass of water the fastest. A Caucasian girl sat on the couch, and the sixth resident of the house, I later learned, was off at a swimming lesson. Within a short while, the girl with the headphones was singing a cappella (and quite well), and the girl huddled over the photo album had started calling me Bob Marley, apparently because I knew who Jordin Sparks was. Now and then, one of the children erupted into laughter.
“The kids are so grateful to be off the drugs,” said therapist Kari Sundstrom. “Their personalities come back. They are people again.”
The two Seneca Center homes may be the last residential facilities in the United States where severely troubled children under county or state control are treated without psychiatric drugs. Indeed, in most child-psychiatry circles, this would be considered unethical. “I’ve been told, ‘If your child had a disease, would you deny your child medication that helped him get better?’” said Seneca Center founder and CEO Ken Berrick. And even within the agency, which has a staff of around seven hundred and provides a variety of services to two thousand troubled children and youth in northern California, the residence program is an anomaly.
When the center opened in 1985, Berrick and others sought to hire consulting psychiatrists who would use psychiatric medications in a “conservative” fashion and never for purposes of “behavioral control.” Some used the drugs more than others, and then there was Tony Stanton, whom the agency hired in 1987 to oversee the children’s residential program. In the 1960s, he had trained at Langley Porter Hospital in San Francisco, which at the time emphasized the “importance of environment” to a child’s mental health. Stanton’s own “attachment theory” convinced him of the importance of emotional relationships to a child’s well-being. Then, in the late 1970s, while he was in charge of a psychiatric ward for children at a county hospital, he assigned a “mentor” to every child. The children weren’t medicated, and he saw a number of them become attached to their mentors and “blossom.”
“That experience allowed me to see this therapeutic principle in action,” Stanton said. “You just can’t organize yourself without a connection to another human being, and you can’t make that connection if you embalm yourself with drugs.”
When a child enters Seneca Center’s residential program, Stanton does not ask “what’s wrong” with the child, but rather “what happened to them.” He gets the department of social services, schools, and other agencies to send him all of the records they have on the child, and then he spends eight to ten hours constructing a “life chart.” As might be expected, the charts regularly tell of children who have been sexually abused, physically abused, and horribly neglected. But Stanton also tracks their medication history and how their behavior may have changed after they were put on a particular drug, and given that the children who arrive at Seneca Center are seriously disturbed, these medical histories regularly tell of psychiatric care that has worsened their behavior. “I’ll have people say, ‘We want to try the child on Risperdal now,’ and I’ll say, ‘Let’s take a look at the chart and see what happened before. I don’t think it will be helpful,’” Stanton said.
The children regularly arrive at the center on drug cocktails, and thus it can take a month or two to withdraw the medications. Often the children, having been repeatedly told that they need the drugs, are nervous about this process—“One kid told me ‘What do you mean you are taking me off my meds? I’ll destroy your program,’” Stanton said—and often they do become more aggressive for a time. Staff may have to use “physical restraints” more frequently (they have been trained to hold the kids in “safe” ways). However, these behavioral problems usually begin to abate and by the end of the withdrawal process, the child has “come alive.”
“It’s wonderful,” Kim Wayne said. “Most times when the kids come in, they can’t keep their heads up, they are lethargic, they are just a blank and there is minimal engagement. You just can’t get through to them. But when they come off their meds, you can engage them and you get to see who they are. You get a sense of their personality, their sense of humor, and what kinds of things they like to do. You may have to use physical restraints for a time, but to me, it’s worth it.”
Once they are off meds, the children begin to think of themselves in a new way. They see that they can control their own behavior, and this gives them a sense of “agency,” Stanton said. The Seneca Center uses behavior-modification techniques to promote this self-control, with the children constantly having to abide by a well-defined set of rules. They have to ask permission to go to the bathroom and enter bedrooms, and if they don’t comply with the rules, they may be sent to a “time-out” or lose a privilege. But the staff tries to focus on reinforcing positive behaviors, offering words of praise and rewarding the kids in various ways. The children are required to keep their rooms clean and perform a daily chore, and at times they will help prepare the evening meal.
“The question of feeling in charge of yourself and being responsible for yourself is the central issue in their lives,” Stanton said. “They may only partially get there while they are with us, but when we are really successful, we see them develop this sense of ‘Oh, I can do this; I want to be in control of myself and my own life.’ They see themselves as having that power.”
Even more important, once the children are off the medications they are better able to form emotional bonds with the staff, and the staff with them. They have known rejection all their lives, and they need to form relationships that nurture a belief that they are worthy of being loved, and when that happens, their “internal narrative” can switch from “I’m a bad kid” to “I’m a good kid.”
“They come in thinking, ‘I’m crazy, you are going to hate me, you are going to get rid of me, I’m going to be the worst kid you have ever seen,” said therapist Julie Kim. “But then they become willing to form [emotional] attachments, and that’s such an amazing thing. You can see the power of a relationship to change a kid, and even the kids who seem the toughest when they come in here, who don’t make any progress at first, eventually do.”
Although Kim and others can tell anecdotal stories of children discharged from the residence program who have returned to ordinary schools and done well, the center has not done a long-term follow-up of the children that have gone through their residence program. The only statistical information the center has to show that its residence program works is this: 225 children lived at its residences from 1995 to 2006, and nearly all were discharged to lower-level group homes or to a foster home or to their biological families. Their time at Seneca Center at least turned their lives in a new direction. And yet, it is difficult to be optimistic that their lives continue down that path. Their emotional and behavioral problems do not completely go away, and so many of the discharged children—and perhaps most—are remedicated. They return to a world where that is the norm. Their time at Seneca Center may primarily provide them with a temporary oasis from a society prone to asking “what’s wrong with them,” and thus, if we want to assess whether the no-medication policy of the center’s residence program is providing the children with a “benefit,” instead of looking to the future, perhaps we should focus on the present and look at what it is like for the children to have this opportunity to “come alive” for a time and fully feel the world.
I spent two days at the center, and there were three children in particular I had a chance to interact with. One was a twelve-year-old boy I’ll call Steve. When he’d arrived at Seneca Center a year earlier, he’d been so filled with suicidal and self-destructive habits that doctors thought he had suffered brain damage from all of his head-banging episodes. Since then he’d become very attached to Stacy, one of the male staff at his house, and during our interview, he flopped down into a chair, grinned, and immediately took over the conversation. “I hate taking medicine. It is real boring being on drugs,” he said, and then he began telling us about migratory turtles, a raccoon that had been poking around their house, a trip to McDonald’s with Stacy, and what people needed to do to prepare for an earthquake. All of that was prelude to a story about a comic book he wanted to write, titled The Adventures of Sam Dune and Rock, which featured numerous “good and evil” characters, including one who needed to take drugs to keep from going mad. Steve held center stage for at least an hour, and afterward he happily informed Stacy that the interview had been “cold, real cold,” which of course meant that he had enjoyed himself immensely.
I’ll call the two African American girls I met in the Los Reyes house Layla (the a cappella singer) and Takeesha. Their “life charts” both told of nightmarish pasts, and that was particularly true for Takeesha. When she’d arrived at the Seneca Center in 2006, at age seven, she was described as delusional, guarded, suspicious, uncooperative, and very sedated. After we spent thirty minutes or so at the kitchen table, talking about American Idol and the trip they had taken to Disneyland, Takeesha asked if we could go outside and play catch with a football. We did that for a while, and then Takeesha got permission to ride her bike in the street, but only if she promised to go only a few houses away in either direction, and suddenly she came to a screeching halt in the driveway. “I’m going to Burger King. What do you want?” she announced. Seconds later she proudly returned holding an imaginary bag filled with a Whopper, French fries, and a Coke, which I paid for with an equally imaginary five-dollar bill, asking if she would please make change. When it came time to say good-bye, Layla asked for a hug, and then Takeesha—having scurried into her bedroom to find something—held out what appeared to be a package of gum, except for the fact that the piece sticking out was clearly metallic in kind.
“It’s just gum!” she squealed when I felt the slight buzz.
The next day I sat in on their class. I spoke briefly with the teacher and several of the aides, and they all said the same thing. “These kids are awesome! We could drug the kids into submission, but for what purpose? I love this place!” I was there with Tony Stanton, and after a while it became evident that our presence was causing a dilemma for both Layla and Takeesha. They were supposed to be paying attention to the teacher, and they knew that if they didn’t, they would be sent to time-out (there was a steady march of children to the timeout corner), and yet both were clearly intent on making contact with us. We were sitting by the sink, and at last both girls decided they just had to wash their hands. As Layla went back to her seat, she couldn’t resist giving us a high-five, even though this was a breach of class protocol. Meanwhile, as Takeesha passed by my chair, she whispered, “Bob Marley, what are you doing here?”
At that moment, I couldn’t imagine any outcome data of a more powerful sort.
On the Drawing Board
Psychiatry and the rest of medicine regularly proclaim that treatments should be “evidence-based.” The solutions we’ve reviewed in this chapter all meet that standard. David Healy’s belief that the psychiatric medications should be used in a cautious manner, the open-dialogue program in Tornio, and the prescribing of exercise as a first-line therapy for mild-to-moderate depression are all rooted in good science. The same can be said of Tony Stanton’s medication-withdrawal policy. Earlier in the book, we saw that children put on stimulants, antidepressants, and antipsychotics often worsen over the long term, and that those who end up on drug cocktails can be said to be suffering from an iatrogenic illness. The medications can be viewed as pathological agents, and thus when Tony Stanton takes the Seneca Center children off the drugs, he is—in essence—providing treatment for a “disease.” The proof that the treatment works can be found in the staff’s observation that the children “come alive.”
Given this perspective, it would be helpful if we could identify a mainstream medication-withdrawal program in adults, one that arises from research into this process. How quickly should the drugs be withdrawn? After the drugs are withdrawn, how long does it take for the brain to “renormalize?” Or does it? Do neuronal feedback mechanisms reset? Do presynaptic neurons begin releasing normal amounts of the neurotransmitter? Do receptor densities return to normal? Psychiatry has been using psychotropic medications for more than fifty years, yet all of these questions basically remain unanswered. Indeed, people who want to stop taking the drugs have been mostly left to fend for themselves, sharing information on the Internet and through their various peer networks.
However, in the fall of 2009, a major provider of mental-health services in eastern and central Massachusetts, Advocates, drew up a plan for a medication-withdrawal study. Advocates provides services to several thousand people with psychiatric difficulties, and in 2008, when it asked its clients for “new ideas,” many put this at the top of their wish list, said Keith Scott, director of recovery and peer support services. “A number said, ‘Geez, it would be great if there would be a place where I could try to stop taking my medication without being threatened with losing my housing or my services and the relationships that are important to me.’ That seemed extremely reasonable to me.”24
The medical director of Advocates, Chris Gordon, who is an assistant clinical professor of psychiatry at Harvard Medical School, said that he hoped to obtain funding from either the state Department of Mental Health or a federal agency. Advocates plans to provide both medical and social support to patients in the “drug reduction/elimination” study, and Gordon said that if patients begin to struggle during the withdrawal process, he’d like to see if they can be helped through that crisis without restarting the medications. He’d like to follow the patients in the program for five years, so Advocates can get a sense of their long-term outcomes.
This initiative, Gordon said, is being driven in part by the fact that the mentally ill are now dying twenty-five years earlier than their peers, and that it is clear that the atypical antipsychotics, which regularly cause metabolic dysfunction, are contributing to that early death problem. “We see it all the time. We could name a terrible list of people we know personally and care about who died way too young,” he said.25
The Alaska Project
If I had to identify one person in the United States who was doing the most to “change the system,” I would pick Alaska attorney Jim Gottstein. A 1978 graduate of Harvard Law School, Gottstein was hospitalized twice in the 1980s because of bouts of mania, and that personal experience has inspired a lifelong career of fighting to improve the plight of the mentally ill in our society.
During the 1980s and 1990s, Gottstein joined other attorneys in an epic lawsuit by the Alaska Mental Health Association against the state. In 1956, Congress allowed Alaska’s territorial administrators to set aside one million acres of prime federal land as an asset that would fund mental-health programs, but in 1978 the state legislature redesignated the acreage as “general grant lands,” leaving the mentally ill out in the cold. The state basically “stole” the land, Gottstein said, and eventually he and other attorneys negotiated a $1.1 billion settlement.26 The state gave $200 million and nearly a million acres of land to a newly created Mental Health Trust Authority, with the trust allowed to spend this money as it sees fit, without the legislature’s approval.
In 2002, Gottstein founded a non-profit organization, Psych-Rights, and the first thing that it did was mount a “public information” campaign. PsychRights brought various people to Anchorage to speak to judges, lawyers, psychiatrists, and the general public about the outcomes literature for antipsychotics.* Gottstein believed that this would provide a foundation for a lawsuit challenging the state’s right to medicate patients forcibly, and for lobbying the Mental Health Trust Authority to fund a Soteria-like home, where psychotic patients who didn’t want to take neuroleptics could get help.
“The public opinion is that the meds work, and that if people weren’t crazy, they would know that the drugs are good for them,” Gottstein said. “But if we can get judges and lawyers to understand that it’s not necessarily good for the person and potentially very harmful, they would tend to honor a person’s legal right to refuse treatment. In the same vein, if the public knew that there are other non-drug approaches like Soteria that work better, they would support alternatives, right?”
State case laws governing the forced treatment of psychiatric patients date back to the late 1970s. Although state supreme courts typically ruled that patients have a right to refuse treatment (in non-emergency situations), they nevertheless noted that antipsychotics were understood to be “a medically sound treatment of mental disease,” and thus hospitals could apply to a court to sanction forced treatment. At such hearings, hospitals regularly argue that no competent person would refuse “medically sound treatment,” and thus courts consistently order patients to be medicated.27But in 2003, Gottstein initiated a forced-drugging lawsuit on behalf of a woman named Faith Myers, and he put the medication on trial, arguing that the state could not show that it was in her best medical interest to take an antipsychotic. He got Loren Mosher and a second psychiatrist who knows the outcomes literature well, Grace Jackson, to serve as his expert witnesses, and he also filed copies of the many research studies that tell of how neuroleptics can worsen long-term outcomes.
Having become versed in the scientific literature, the Alaska Supreme Court gave PsychRights a stunning legal victory in 2006. “Psychotropic medication can have profound and lasting negative effects on a patient’s mind and body,” the court wrote. These drugs “are known to cause a number of potentially devastating side effects.” As such, it ruled in Myers v. Alaska Psychiatric Institute that a psychiatric patient could be forcibly medicated only if a court “expressly finds by clear and convincing evidence that the proposed treatment is in the patient’s best interest and that no less intrusive alternative is available.”28 In Alaska case law, antipsychotics are no longer viewed as treatment that will necessarily help psychotic people.
In 2004, Gottstein launched an effort to get the Mental Health Trust Authority to fund a Soteria home in Anchorage, which would offer psychotic patients the type of care that Loren Mosher’s Soteria Project did in the 1970s. Once again, he relied on the persuasive powers of the scientific literature to carry his argument, and in the summer of 2009, a seven-bedroom Soteria home opened a few miles south of downtown. The director of the project, Susan Musante, formerly led a psychiatric rehabilitation program at the University of New Mexico Mental Health Center; the consulting psychiatrist, Aron Wolf, is a well-respected figure in Alaskan psychiatry.
“We want to work with younger people who have been on psychiatric medications for only a short time, and by getting them off the meds and helping them get better, we hope to keep them from going down the path of chronic illness,” Musante said. “Our expectation is that people will recover. We expect them to go to work or to school, to return to age-appropriate behavior. We are here to help them to dream again and to pursue those dreams. We are not set up to funnel them onto SSI or SSDI.”29
Gottstein now has his sights set on a legal challenge national in scope. He has been filing lawsuits that challenge the medicating of foster children and poor children in Alaska (the poor are covered by Medicaid), and ultimately he hopes to take one of these cases to the U.S. Supreme Court. He sees this as a 14th Amendment issue, with the children being deprived of their liberty without due process of law. At the heart of any such case would be a scientific question: Are the foster children being treated with medications that help, or are they being treated with tranquilizing drugs that cause long-term harm?
“I analogize it to Brown v. Board of Education,” Gottstein said. “Before that decision, there was widespread acceptance in the United States that segregation is OK. The Supreme Court had previously said that segregation was OK. But then in Brown v. Board of Education, the court said it wasn’t OK, and that really changed public opinion. Today you can’t get anyone to say segregation is OK. And that’s how I visualize this whole effort.”
We the People
As a society, we put our trust in the medical profession to develop the best possible clinical care for diseases and ailments of all types. We expect that the profession will be honest with us as it goes about this task. And yet, as we look for ways to stem the epidemic of disabling mental illness that has erupted in this country, we cannot trust psychiatry, as a profession, to fulfill that responsibility.
For the past twenty-five years, the psychiatric establishment has told us a false story. It told us that schizophrenia, depression, and bipolar illness are known to be brain diseases, even though—as the MindFreedom hunger strike revealed—it can’t direct us to any scientific studies that document this claim. It told us that psychiatric medications fix chemical imbalances in the brain, even though decades of research failed to find this to be so. It told us that Prozac and the other second-generation psychotropics were much better and safer than the first-generation drugs, even though the clinical studies had shown no such thing. Most important of all, the psychiatric establishment failed to tell us that the drugs worsen long-term outcomes.
If psychiatry had been honest with us, the epidemic could have been curbed long ago. The long-term outcomes would have been publicized and discussed, and that would have set off societal alarms. Instead, psychiatry told stories that protected the image of its drugs, and that storytelling has led to harm done on a grand and terrible scale. Four million American adults under sixty-five years old are on SSI or SSDI today because they are disabled by mental illness. One in every fifteen young adults (eighteen to twenty-six years old) is “functionally impaired” by mental illness. Some 250 children and adolescents are added to the SSI rolls daily because of mental illness. The numbers are staggering, and still the epidemic-making machinery rolls on, with two-year-olds in our country now being “treated” for bipolar illness.
As I noted earlier in this chapter, I believe the MindFreedom Six showed what must be done if we are going to halt this epidemic. We need to become informed about the long-term outcomes literature reviewed in this book, and then we need to ask the NIMH, NAMI, the APA, and all those who prescribe the medications to address the many questions raised by that literature. In other words, we need to have an honest scientific discussion. We need to talk about what is truly known about the biology of mental disorders, about what the drugs actually do, and about how the drugs increase the risk that people will become chronically ill. If we could have that discussion, then change surely would follow. Our society would embrace and promote alternative forms of non-drug care. Physicians would prescribe the medications in a much more limited, cautious manner. We would stop putting foster children on heavy-duty cocktails and pretending that it was medical care. In short, our societal delusion about a “psychopharmacology” revolution could at last fade away, and good science could illuminate the path to a much better future.
* In the interest of full disclosure, I was one of the speakers at several of those events.