New hope for people with schizophrenia
A growing number of psychologists say recovery is possible with psychosocial rehabilitation.
BY PATRICK A. McGUIRE
Early last year, when Ronald F. Levant, EdD, sought out colleagues to support an APA miniconvention on serious mental illness, he told a group of fellow psychologists how recovery from a major disorder such as schizophrenia was not only possible, it was happening regularly.
“Recovery from schizophrenia?” a colleague snorted. “Have you lost your mind, too?”
Levant, APA’s recording secretary and dean of the Center for Psychological Studies at Nova Southeastern University, was eventually able to rally support for the miniconvention, held last year in Boston. But he still cringes at the sound of that laugh.
“I know psychologists who think that way about schizophrenia,” he says. “I don’t think they’re up to speed. They don’t know the literature. They haven’t talked to consumers. Frankly, they are using models that are out of date.”
The old treatment models, he notes, viewed patients as hopeless cases who needed to be stabilized with hospitalization, and then maintained with medications. The heavy, tranquilizing effects of those drugs made management of patients easier, although they only masked the disease. And, many now acknowledge, they caused serious side effects, including the familiar facial disfiguration known widely in the 1960s and ’70s as “the Thorazine look.”
“The old clinicians used to write about ‘burned out schizophrenics,’ like the burned out shell of a person,” says psychologist Courtenay M. Harding, PhD, a professor of psychiatry at the University of Colorado. “But given half a chance, people can significantly improve or even recover.”
In fact, among a small but growing core of psychologists–many of them, like Harding and Levant, members of an APA task force on serious mental illness–the concept of recovery, with its many definitions, is emerging as a new paradigm for schizophrenia treatment.
Psychologists are not only challenging the dire predictions of the past, they are finding new career paths as planners, teachers, counselors, managers, researchers, even public policy advocates. Many even see the schizophrenia field, once nearly barren of psychologists, as a promising market niche.
At the heart of the recovery movement is the idea that instead of focusing on the disease or pathological aspect of schizophrenia–as does the medical model–emphasis is placed on the potential for growth in the individual. That potential is then developed by integrating medical, psychological and social interventions.
Recovery, however, does not necessarily mean cure. Traditionally, the medical model of treatment has defined a “good outcome” from schizophrenia only in terms of a total cessation of symptoms, with no further hospitalization. Many who embrace the recovery paradigm feel those criteria are irrelevant.
“I define recovery as the development of new meaning and purpose as one grows beyond the catastrophe of mental illness,” says William A. Anthony, PhD, executive director of Boston University’s Center for Psychiatric Rehabilitation. “I think the literature on long-term studies…shows people do get past mental illness. My feeling is you can have episodic symptoms and still believe and feel you’re recovering.”
But even within the recovery movement, there are differing definitions of the term. Harding, for example, bases her view of recovery strictly on positive outcome research “findings,” and not on the ongoing “process.”
“In my definition there appears to be a recalibration of the brain to fully function again,” she says. “I define recovery as reconstituted social and work behaviors, no need for meds, no symptoms, no need for compensation.” Harding defines “significant improvement” as “someone who has recovered all but one of those areas.”
Even with these differences, two key precepts of recovery have to do with a patient’s right to play a hands-on role in getting well, and the need for the system to acknowledge that each patient is different and has different needs. That is unlike the old system, says Harding, where patients were treated with a “one-size-fits-all” approach, and if they didn’t immediately get well, they were deemed forever chronic.
From past to present, experts have agreed on the general symptoms of schizophrenia–the hearing of voices, delusions, hallucinations, disorganized speech, confused thinking–but their efforts to trace its etiology have been stymied by the many forms the disease takes.
“Schizophrenia is a very loose concept,” says Robert D. Coursey, PhD, a professor of psychology at the University of Maryland. “I once figured out that you could get 27 different profiles of people with schizophrenia using the Diagnostic and Statistical Manual-IV (DSM-IV).”
Today, an estimated 2.5 million Americans are diagnosed with schizophrenia. The National Institutes of Health says the total costs of the illness approach $30 billion to $65 billion annually. Nearly a quarter of all mental illness costs combined are connected to schizophrenia, with two-thirds of its treatment costs borne by government.
On the human side, the statistics are equally grim: One of every 10 young males with schizophrenia commits suicide.
At the most optimistic of times, the traditional treatment paradigm conceded that perhaps 10 percent to 20 percent of those with schizophrenia might achieve recovery. But proponents of the recovery movement point to data that shows as high as 68 percent rate of recovery and significant improvement.
Best known under the name psychosocial rehabilitation, the recovery philosophy is practiced in about 4,000 dedicated programs across the country, says Ruth Hughes, PhD, president of the International Association of Psychosocial Rehabilitation Services (IAPRS). Each provides patients with work and social skills training, education about their disease and why medications are important, symptom management, and often, therapy for dealing with the trauma of having schizophrenia.
They intervene in the acute stage of the disease by providing a nonthreatening place to go for symptom relief and crisis intervention, but they also work with those who have had schizophrenia for years, and haven’t gotten well in other types of treatment. What makes these programs different from past treatments is the focus on a patient’s potential, rather than the disease, and the closely coordinated integration of services across disciplines.
Oriented toward the practical, psychosocial rehabilitation teaches a patient how to access resources–such as health services and housing availability–and regain independent functioning. It also provides programs of enrichment or self-development, even basic support such as housing and food.
Another important tool in recovery, says Henry Tomes, PhD, APA’s executive director for the public interest, is the psychosocial clubhouse. These are places, usually funded with local mental health funds and private donations, that focus primarily on teaching skills “that will lead people to live independently,” says Tomes. “The primary goal is to allow people to work at competitive jobs.”
Actual treatment for schizophrenia, he says, is obtained in other psychosocial programs outside the clubhouse.
All in all, says Coursey at Maryland, “A very large group of consumers has achieved remarkable recovery. They are people who, in spite of ongoing symptoms, have carved out a life. They have goals, they make choices, they improve their situation with the right type of interventions.”
One of them is Ronald Bassman, PhD. Diagnosed with schizophrenia as a young man, he recovered, earned his doctorate and is now involved in patient empowerment programs in the New York State Office of Mental Health.
“It’s miraculous how people come back,” he says. “If you talk to someone who is doing better, he or she will tell you that someone–a friend, a family member, a pastor, a therapist–reached out with warmth and gentleness and kindness. This is not what is typically done in the mental health system.”
To counter that, many former patients and their families have organized themselves as formidable advocates, calling themselves consumers, ex-patients and survivors. Their demand to be recognized as individuals who deserve a voice in their treatment is captured in the slogan “Nothing about us, without us.”
In fact, their complaints have made them the significant factor in changing the system, say experts–and also in pointing up the failure of psychology to play a leadership role.
WHERE ARE THE PSYCHOLOGISTS?
“Psychology as a field has not focused its training and teaching in the area of serious mental illness,” says Anthony, in Boston. “This is a message that consumers have been bringing to us but we haven’t been listening.”
Too many psychologists, say Anthony and others, remain unaware of the new hope, and have shown little interest in working in schizophrenia.
“There is no one out there teaching patients how to cope with stressing voices,” says Patricia Deegan, an ex-patient who is now director of training at the National Empowerment Center in Lawrence, Mass. “Or how to avoid or get out of the delusional vortexes of thought that you slide into. I think psychologists are a decade behind.”
In fact, say survivors like Bassman and Deegan, valuable testimony from patients themselves is often dismissed.
“People say ‘Oh, you were misdiagnosed,” says Bassman. “Otherwise, you couldn’t be where you are now.’ I mean, that’s an impossible circular argument.”
Sadly, says Anthony Lehman, MD, a psychiatrist at the University of Maryland School of Medicine, “There is still a lot of mistrust in the professional community about patient self-reports. We just think ‘Those people are crazy and they can’t provide a valid assessment of what’s going on in their lives.’ I think we tend to discount people.”
But it’s not just the treatment system that has a blind spot.
According to Hughes at IAPRS, perhaps only one in 10 of the people who need psychosocial care for schizophrenia is getting it. A big reason for that, she says, is the reluctance of insurance companies to pay for anything but traditional treatment–which usually means medications alone.
“Most of those with schizophrenia are getting a maintenance approach that is not doing them a service,” adds Lehman. “The evidence is that most people get fairly minimal treatment.”
“What’s really sad,” says Harding, “is that [psychologists] could be really strong players in treatment and we’re not.”
Harding is best known for performing two of the longest longitudinal studies of schizophrenia outcomes in the United States. Her 1987 findings, viewed today by many as the centerpiece of the recovery movement, were the first empirical shots fired against the one-size-fits-all theory of that time.
Harding’s research centered on a cohort of patients from the Vermont State Hospital, released between 1955 and 1960 in a state-funded, early model bio-psycho-social rehabilitation program. This was one of the first “deinstitutionalization” programs that emptied state hospitals across the country from the 1950s into the 1970s. Most relied solely on ex-patients taking powerful new psychotropic drugs to keep them stable on the outside.
The 269 patients chosen for the Vermont model study, however, were classic back ward cases–those diagnosed with chronic schizophrenia and deemed unable to survive outside.
Their 10-year rehabilitation program (1955-1965) relied on a team of caregivers including psychiatrists, a psychologist, a nurse, sociologists and a vocational counselor to maintain a continuity of care for the ex-patients. The team found community housing and provided vocational clinics that led to jobs, education and social supports, individualized treatment planning, as well as social skills training.
About two-thirds of the ex-patients did well, says Harding. When the model program ended, the cohort of ex-patients was already connected with natural community supports. Many of their original caregivers even checked in with them on a volunteer basis.
Harding entered the picture in the 1980s when she and her colleagues tracked down and interviewed all but seven of the original 269 patients–an average of 32 years after their first admission to the hospital.
“My clinical assessors and I were quite skeptical about finding any kind of recovery,” she says, “because we’d all been trained in the old model. As a former psychiatric nurse on an inpatient unit, it sure didn’t look like to me that anyone could get better.”
Her methodology included a recalibration of the original diagnosis of each patient, using the current (1980) volume of the DSM-III. Its definition of schizophrenia was more restrictive than the volume published by the American Psychiatric Association in 1952. Those who interviewed the patients for Harding were blind to everything in the records, and the record abstracter was blind as to current outcome.
Not only did the rediagnoses of schizophrenia hold to the narrower definitions, Harding’s study in The American Journal of Psychiatry (Vol. 144, No. 6, p. 718-735) showed that 62 percent to 68 percent of those former back ward patients showed no signs at all of schizophrenia. “They just didn’t have them anymore.”
But why? Harding suspected the psychosocial treatment program had made the difference, and got funding to conduct a comparison study to determine if that was true. She spent eight years looking for a similar cohort of patients and, with the help of colleague Michael DeSisto, PhD, as well as the Maine director of mental health, found a near-perfect match in the Augusta State Hospital in Maine.
“We matched each patient in Vermont to an Augusta patient,” she says. “We matched everything. The age, the diagnosis, gender and the length of hospitalization. We matched the catchment areas on health and census data and all the protocols. We used DSM-III to do a rediagnosis on them. And matched the treatment era of the mid-1950s.”
Only one thing did not match. In the years after their release, the ex-patients from Maine had not received any rehabilitation or systematic follow-up. The results: A significant improvement and recovery rate of 48 percent.
The Vermonters, says Harding, showed fewer symptoms, many more of them were working, and they showed much better community adjustment.
It dawned on her then that the Maine system and the Vermont system at the time were driven by very different treatment strategies.
“The Vermont model was self-sufficiency, rehabilitation and community integration,” she recalls. “The Maine model was meds, maintenance and stabilization.”
Even so, why did Vermont’s strategy work better than Maine’s? The answer reflects an intriguing aspect of the recovery movement: No one is quite sure why.
For instance, at Maryland, Coursey and his graduate students have conducted numerous interviews with people who have recovered from schizophrenia, asking them the same ‘why’ questions.
Many describe critical turning points.
They said the most important element “had been finding a safe, decent place to live, rather than being out on the streets,” he says. “And a lot of these people in our studies had a mentor. Someone they trusted, who cared.”
But why did that help?
“I think the ‘why’ is not that well understood,” he says. “[Ex-patients] can describe what are the major elements, and we can see how they differ from those patients who give up. But what happened to make it happen is not always clear.”
Even Anthony in Boston is not more specific.
“All of the interventions work in the context of a recovery vision,” he says. “They each have their own particular goals. And combined together, they mysteriously help people recover.”
Harding is more definite.
“The brain is the most plastic organ we have in interaction with the environment,” she says. “Maybe what we are looking at is the neuroplasticity of the brain that is very slowly correcting the problem on its own, in interaction with the environment.”
Does that mean people with schizophrenia will spontaneously recover at some point? Harding only smiles at the question, but notes that all of those in her Maine and Vermont studies who had fully recovered, had long since stopped taking medications.
What they had in common was that they were out of the hospital, she says, “and had someone who believed in them, someone who had told them they had a chance to get better.”
HIGH RATES OF RECOVERY
Harding’s Vermont study was an immediate sensation because, while even skeptics agreed that from 10 percent to 20 percent of those with schizophrenia might recover, no one in the United States had ever suggested such a high rate of recovery, and in such a long-term study.
Also, Harding’s results did not agree with the American Psychiatric Association’s DSM-III, which explicitly said the prognosis for schizophrenia was uniformly poor.
“She was one of the researchers who dispelled many myths about long-term chronicity in mental illness,” says Anthony, in Boston.
Harding cites nine other longitudinal studies like hers, conducted in Asia and Europe. Three of those were conducted before her 1987 study, but had been ignored by American researchers. Each of the nine studies reported an average of 50 percent or higher recovery rates. Hers was the only long-term pair of studies to be matched, and, say colleagues, were so expensive and time consuming that few others can afford to attempt a replication.
Some, though, even in the medical community, are conducting more limited versions. Nancy Andreasen, MD, PhD, of the University of Iowa, for example is just beginning to pull together the results of a longitudinal study, tracking patients with schizophrenia over 10 years.
“We see many patients who have improved substantially from their baseline diagnosis,” she says. “Many patients emerge from the acute phase and stabilize, and then steadily improve.”
Andreasen, a psychiatrist known for her research into the biological basis of human behavior in people with schizophrenia, agrees that the medical model is not the total answer to the question of treatment.
“Nobody believes more strongly than I that [treatment] should include psychological support and a decent effort to do psychosocial rehab,” she says.
“Many of us feel that when you tell people their disease is lifelong, you may be creating self-fulfilling prophecies. There is empirical data accumulating that indicates the dire prognosis of schizophrenia we once had may not be so dire in many cases.”
And, she adds, she and her colleagues in medicine and psychology “don’t really know, scientifically, what the outcome is of schizophrenia in the era we live in–where patients are cared for in the community and treated with medications that have fewer side effects. We haven’t really touched the surface of what we can do with psychosocial or cognitive rehabilitation. We need more of those programs.”
True, says Levant at Nova Southeastern, but rehabilitation is only half the battle.
Anthony, William A. Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, Vol. 16, No. 4, p. 11-23 (1993).
Coursey, Robert D., Alford, Joe, and Safarjan, Bill. Significant advances in understanding and treating serious mental illness. Professional Psychology: Research and Practice, Vol. 28, No. 3, p. 205-216 (1997).
Frese, Frederick J., and Davis, Wendy Walker. The consumer- survivor movement, recovery and consumer-professionals. Professional Psychology: Research and Practice, Vol. 28, No. 3, p. 243-245 (1997).
Lenzenweger, Mark F., and Dworkin, Robert H., eds. “Origins and Development of Schizophrenia (APA Books, 1998)
“A very large group of consumers has achieved remarkable recovery. They are people who, in spite of ongoing symptoms, have carved out a life. They have goals, they make choices, they improve their situation with the right type of interventions.”
— Courtenay M. Harding
University of Colorado