RAIPUR RANI, India -- Second of three articles
Psychiatrist Naren Wig crossed an open sewer, skirted a pond and, in the dusty haze of afternoon, saw something miraculous.
Krishna Devi, a woman he had treated
years ago for schizophrenia, sat in a courtyard surrounded by religious
pictures, exposed brick walls and drying laundry. Devi had stopped
taking medication long ago, but her articulate speech and easy smile
were eloquent testimony that she had recovered from the debilitating
disease.
Few schizophrenia patients in the United
States are so lucky, even after years of treatment. But Devi had hidden
assets: a doting family and an embracing village that never excluded
her from social events, family obligations and work.
Devi
is a living reminder of a remarkable three-decade-long study by the
World Health Organization -- one that many Western doctors initially
refused to believe: People with schizophrenia, a deadly illness
characterized by hallucinations, disorganized thinking and social
withdrawal, typically do far better in poorer nations such as India,
Nigeria and Colombia than in Denmark, England and the United States.
The
astounding result calls into question one of the central tenets of
modern psychiatry: that a "brain disease" such as schizophrenia is best
treated by hospitals, drugs and biomedical interventions.
European
and U.S. psychiatrists were so shocked by the initial findings in the
1970s that they assumed something was wrong with the study. They
repeated it. The second trial produced the same result. The best
explanation, researchers concluded, is that the stronger family ties in
poorer countries have a profound impact on recovery.
"If
you have a cardiovascular problem, I would prefer to be a citizen in
Los Angeles than in India," said Benedetto Saraceno, director of the
department of mental health and substance abuse at WHO's headquarters
in Geneva. "If I had cancer, I would prefer to be treated in New York
than in Iran. But if you have schizophrenia, I am not sure I would
prefer to be treated in Los Angeles than in India."
Most
people with schizophrenia in India live with their families or other
social networks -- in sharp contrast to the United States, where most
patients are homeless, in group homes or on their own, in psychiatric
facilities or in jail. Many Indian patients are given low-stress jobs
by a culture that values social connectedness over productivity;
patients in the United States are usually excluded from regular
workplaces.
Indian families sit in on doctor-patient
discussions because families are considered central to the problem and
the solution. In America, doctor-patient conversations are confidential
-- and psychiatrists primarily focus on brain chemistry.
Norman
Sartorius, the former head of WHO's mental health program, spearheaded
the schizophrenia studies. He says there is much the United States and
Europe could learn from villages such as Raipur Rani.
In
an interview at his home in Geneva, he said Western countries could
financially help families take care of their relatives, which would
save money on hospitalization and incarceration. Caregivers might be
given time off from jobs. And doctors could enlist recreational and
religious groups to replace the social networks that patients lose.
"Social
factors play a major and important role in the outcome of disease,"
Sartorius said. "Very few solutions are medical in medicine."
Decades
of research have supported the WHO findings, but they have met with
stony silence in the United States, in part because anti-psychiatry
groups have argued erroneously that the studies prove that drugs and
doctors are useless. Most U.S. psychiatrists see schizophrenia as an
organic brain disorder, whose origins and outcome depend on genes and
brain chemistry. They acknowledge the psychosocial aspects of disease,
but the challenges of connecting patients with jobs, schooling and
social networks are neglected -- often because they fall outside the
bounds of traditional medicine.
Asked whether he
would agree that schizophrenia patients might be better off in Nigeria
than in New York, Darrel Regier, director of research at the American
Psychiatric Association, was blunt: "God, no!"
Regier
is not alone. Patient advocacy groups are also uneasy about giving
families a central role because, in a previous era, a now-discredited
theory blamed schizophrenia on poor parenting.
Drug
manufacturers, too, are focused elsewhere. "Pharmaceutical companies,
which control the scientific production of research at universities,
are not interested in saying, 'Social factors are more important than
my drug,' " said Jose Bertolote, a WHO psychiatrist. "I'm not against
the use of medication, but it's a question of imbalance."
Western
doctors cannot write prescriptions for stronger family ties, Bertolote
said. But Indian psychiatrists, unlike their Western counterparts,
dispense not only drugs but also spiritual advice, family counseling --
even matchmaking services. Indian doctors are seen not only as medical
experts, but as wise authority figures.
In the south
Indian city of Chennai, psychiatrist Shantha Kamath writes
prescriptions for better family ties: When a father asked for her help
in arranging the marriage of his daughter, who has schizophrenia,
Kamath's written instructions told the parents how to interact with
their daughter and listed the skills the young woman needed to learn
before the doctor would arrange a match.
Trend Emerged Slowly
The
International Pilot Study on Schizophrenia was launched in 1967 to
determine whether the disease existed in all countries and whether it
could be reliably diagnosed and treated.
The study
quickly established that the disease occurs everywhere. Only gradually
did it emerge that patients in poor nations had better outcomes. The
second study, which had more rigorous guidelines, included Naren Wig's
patients in Raipur Rani village.
In all, the study
tracked about 3,300 patients, Sartorius said, and 30-year follow-ups
confirmed the initial trends. The study spanned a dozen countries --
capitalist and communist, eastern and western, northern and southern,
large and small, rich and poor.
The results were
consistent -- and surprising. Patients in poorer countries spent fewer
days in hospitals, were more likely to be employed and were more
socially connected. Between half and two-thirds became symptom-free,
whereas only about a third of patients from rich countries recovered to
the same degree, Sartorius said.
Nigerian, Colombian
and Indian patients also seemed less likely to suffer relapses and had
longer periods of health between relapses. Doctors in poorer countries
stopped drugs when patients became better -- whereas doctors in rich
countries often required patients to take medication all their lives.
A
separate study, in rural China, recently revealed that low doses of
medication could be as effective as high doses, and virtually
eliminated side effects, said Martin Gittelman, a clinical professor of
psychiatry at New York University. And older medications, largely
discarded in wealthier countries, were as effective as newer, expensive
anti-psychotic drugs.
The secret? The "hand labor"
of extended families and primary care workers to constantly monitor
patients and bump up medication dosages at the earliest sign of
psychotic flare-ups, Gittelman said. Nuclear families in more urbanized
societies are often unable to provide that kind of help and monitoring,
he added: "Urban Shanghai may look closer to urban New York than to
rural China."
"A culture like ours is oriented
around individual autonomy and accomplishment," said William Carpenter,
a psychiatrist at the University of Maryland in Baltimore who helped
run a wing of the WHO study in the Washington area. In countries such
as Denmark, "if you were psychotic, you were on disability for life.
Virtually nobody who had schizophrenia had a job."
In
country after country, WHO found that strong social and family
connections trumped high-tech medical facilities. Wig, the Indian
psychiatrist, had just launched a psychiatry department in the northern
Indian city of Chandigarh when the second phase of the WHO study began
in 1978. He had no nurses. Out of necessity, he asked families to stay
with patients 24 hours a day. Relatives became the nurses. The practice
persists to this day.
The tight security found at
most American psychiatric wards is absent in Chandigarh: For one thing,
it is unaffordable, but Wig also found that relatives are more
effective than strangers in calming agitated patients.
Patients
at the Chandigarh hospital today pay a dollar a day. That includes
meals. As the WHO study got underway, Wig realized there were many
patients in India who could not afford even the inexpensive hospital
care. The study therefore included patients in the nearby village of
Raipur Rani, where doctors could dispense outpatient care.
Krishna
Devi was 22 when she was enrolled in the study. Doctors noted that her
thinking was disordered -- she talked about irrelevant things and
turned aggressive without reason. She was paranoid and hallucinated
that a man was chasing her, said Arun Misra, a psychiatrist who treated
her and maintained neat, handwritten records in bound folders of
now-yellowing sheets of paper.
The villagers had
their own explanations for Devi's behavior -- no one had heard of
schizophrenia. And Devi's odd behavior was seen as no reason to keep
her isolated. She got married and had five children. Devi's husband, a
potter, was supportive, as were other relatives. Neighbors helped too,
and in time, she said, she got better.
Wig, who
trained as a psychiatrist in England, keeps up with the latest
research, but mostly he tells his patients about religious figures who
overcame obstacles. He never tells them schizophrenia is a chronic,
incurable brain disease. And he encourages patients to complement his
treatment with faith-healing techniques.
"In India,
people do not accept the medical model of schizophrenia," Wig said.
"The medical model says, 'This is a genetic, biochemical thing and you
have to keep giving medicine and there is nothing else that can be
done.' . . . Indian patients continue to sustain hope."
Families Play a Crucial Role
Lakshmi
Ramachandran lived in Detroit, but she decided to take her son back to
India after he was diagnosed with schizophrenia in his early twenties.
The family had moved to the United States when Rajesh was 2, but after
he fell ill it was decided he would do better in Chennai.
"He
likes the crowds -- in Detroit, you had to motivate yourself to
socialize," the mother said in an interview in Chennai. "Here, the
neighbors come and ask, 'Hi, Rajesh, how are you?' "
Families
are the reason Indian patients have better outcomes, said psychiatrist
R. Thara Srinivasan, who heads a nonprofit treatment facility called
the Schizophrenia Research Foundation (SCARF) in Chennai. The
foundation has independently verified the WHO study results.
"My
theory is that the family here ensures they take medication properly,"
said the psychiatrist, who prefers to be identified by the single name
Thara. "Compliance is a problem in the West."
If
patients refuse medication, Thara instructs families to crush the pills
and disguise the medicine in food. During a reporter's visit, another
SCARF psychiatrist, Shantha Kamath, paid a small amount of money to her
patient for taking an anti-psychotic injection -- a reward he has now
come to expect.
Westerners have criticized such
practices, but Thara argues that patient-doctor relationships in India
are fundamentally different from those in America: The relationships
may be paternalistic, but the benefits are lower costs and less
fragmentation. On an annual budget of $67,000, SCARF treats 1,200
patients, dispenses free drugs, runs three residential facilities for
150 patients and offers vocational training each day for 100 patients.
Social
connectedness for patients is seen as so important that the
psychiatrists tell families to secretly give money to employers so that
patients can be given fake jobs, work regular hours and have the
satisfaction of getting "paid" -- practices that would be unethical,
even illegal, in the United States.
While work and
family are clearly beneficial for patients, Thara acknowledged that
caregivers, who are usually women, pay a price.
"My
parents told me to get married," said one Chennai woman, C. Chitra,
whose marriage was arranged when she was 23. Her in-laws, who came from
a wealthier family, had told her only that her husband-to-be sometimes
"got angry."
Chitra thought nothing of it: "Everyone gets angry."
But her 34-year-old husband had schizophrenia. "He hit me without reason," she said.
Chitra
did not consider divorce: She felt her options as a poor, divorced
woman would be worse. Shortly thereafter, her husband's brother moved
in with them -- and he had schizophrenia, too. Chitra cared for both
men, dealt with their psychoses and calmed them when they turned
violent.
Her husband slowly got better. Chitra had a
baby, and she said she finally is happy. But when her in-laws wanted to
arrange a marriage for her husband's brother, she put her foot down.
She did not want another woman to go through what she had endured.
Battling Social Withdrawal
Prince
George's County outside Washington was one of the sites of the
pioneering WHO study -- William Carpenter helped treat about 90
schizophrenia patients at three hospitals. That experience brought home
to him the fact that medications primarily control patients' delusions
and hallucinations, not the "negative" symptoms that cause patients to
disappear into silent, inner worlds.
"The bias has
always been in the direction of reducing psychosis," said Carpenter,
director of the Maryland Psychiatric Research Center. "Psychosis is
public and bothersome. . . . Negative symptoms bother you if it's your
child, but it doesn't create a public disturbance."
Anti-psychotic
drugs that help quell the outward symptoms may actually exacerbate
social withdrawal, he said: "While we treat one part of the illness, we
potentially complicate another part of the illness."
New
medicines are being aimed at the negative symptoms. But Carpenter and
other experts said it is clear that drugs cannot replace social
supports.
Treating schizophrenia without
anti-psychotic drugs is unthinkable, Wig and Saraceno said. But the
current system in wealthy countries merely brings patients who are in
crisis into hospitals, stabilizes them with drugs and discharges them
after a few days. Saraceno said that approach is doomed to end in a new
crisis -- the familiar "revolving door."
Ronald
Manderscheid, a public health expert at the U.S. Substance Abuse and
Mental Health Services Administration, said policymakers have come to
understand that the key to treating schizophrenia lies in integrating
cultural and social supports with medicine, as villages such as Raipur
Rani have long done.
"Is it possible that a mental
health system which is poor, deprived, with no resources, no drugs is
providing better and more humane and sensible service to the population
rather than in rich countries?" WHO's Saraceno asked. "Good mental
health service doesn't require big technologies but human technologies.
Sometimes, you get better human technologies in the streets of Rio than
in the center of Rome."
