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growing number of psychologists say recovery is possible with
psychosocial rehabilitation.
BY PATRICK A. McGUIRE
Monitor staff
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 Frankly, they are using models that are out of
date."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.
INTEGRATING SERVICES
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.
MODEL STUDY
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.
TURNING POINTS
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.
SELF-FULFILLING PROPHECIES
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.
Further reading
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).
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