Anatomy of an Epidemic (50 page)

“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.”

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.”
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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.
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“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.”
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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.
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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

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.”
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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.”