Last of three articles
John
Zeber recently examined one of the nation's largest databases of
psychiatric cases to evaluate how doctors diagnose schizophrenia, a
disorder that often portends years of powerful brain-altering drugs,
social ostracism and forced hospitalizations.
Although schizophrenia has been
shown to affect all ethnic groups at the same rate, the scientist found
that blacks in the United States were more than four times as likely to
be diagnosed with the disorder as whites. Hispanics were more than
three times as likely to be diagnosed as whites.
Zeber,
who studies quality, cost and access issues for the U.S. Department of
Veterans Affairs, found that differences in wealth, drug addiction and
other variables could not explain the disparity in diagnoses: "The only
factor that was truly important was race."
The
analysis of 134,523 mentally ill patients in a VA registry is by far
the largest national sample to show broad ethnic disparities in the
diagnosis of serious mental disorders in the United States.
The
data confirm the fears of experts who have warned for years that
minorities are more likely to be misdiagnosed as having serious
psychiatric problems. "Bias is a very real issue," said Francis Lu, a
psychiatrist at the University of California at San Francisco. "We
don't talk about it -- it's upsetting. We see ourselves as unbiased and
rational and scientific."
As the ranks of America's
patients and doctors become more diverse, psychiatrists such as Lu are
spearheading a movement to address the problem. Clinicians need to be
trained in "cultural competence," they say, to prevent misdiagnosis and
harm.
Psychiatrist Heather Hall, a colleague of
Lu's, said she had to correct the diagnoses of about 40 minorities over
a two-year period. She estimated that one in 10 patients referred to
her came with a misdiagnosis such as schizophrenia, a disorder
characterized by social withdrawal, communication problems, and
psychotic symptoms such as delusions and hallucinations.
Unlike
AIDS or cancer, mental illnesses cannot be diagnosed with a brain scan
or a blood test. The impressions of doctors -- drawn from verbal and
nonverbal cues -- determine whether a patient is healthy or sick.
"Because
we have no lab test, the only way we can test if someone is psychotic
is, we use ourselves as the measure," said Michael Smith, a
psychiatrist at the University of California at Los Angeles who studies
the effects of culture and ethnicity on psychiatry. "If it sounds
unusual to us, we call it psychotic."
When hospitals
diversified their staffs to include Spanish-speaking doctors, many
cases of psychotic behavior were reassessed, he said: "Half the cases
were rediagnosed as depression. Some doctors think if you don't make
eye contact, you can be diagnosed. In some communities, eye contact is
a sign of disrespect."
Zeber and a team of other
researchers said they do not know why doctors were more likely to
diagnose schizophrenia among blacks and Hispanics. Perhaps diagnostic
measures developed primarily with white patients in mind do not
automatically apply to other groups, said Zeber, who published his
results in the journal Social Psychiatry and Psychiatric Epidemiology.
"Race
appears to matter and still appears to adversely pervade the clinical
encounter, whether consciously or not," Zeber and his colleagues wrote
in their October 2004 report.
Darrel Regier,
director of the division of research at the American Psychiatric
Association and U.S. editor of the journal, said the study had been
carefully conducted. He agreed that cultural differences between
patients and doctors could result in misdiagnosis.
"I
believe bias exists, and there is a risk a psychiatrist with a
different cultural experience than a patient can misinterpret the
expression of a psychiatric symptom," he said. "If you have a very
religious group of patients and a very secular psychiatrist who thinks
beliefs in spirits or hearing the voice of God is not normal, you are
going to have misses."
But he added that Zeber's
study did not explain what caused the diagnostic disparity among the
veterans. Regier also questioned whether the veterans in the study were
representative of the general population, or even representative of all
veterans. Different ethnic groups seek care in different ways within
and outside the VA, he said, and blacks tend to seek care when they are
sicker than white patients.
While agreeing that even
more comprehensive analyses are possible, Zeber stood by his findings.
The study had carefully eliminated a host of confounding variables, he
said, and the analysis had not found that black patients were any
sicker than whites. "Access issues or selection bias are unlikely to
account for our findings," the paper concluded.
"If
you have an African American patient presenting with elevated paranoia,
that has been referred to in some quarters as healthy paranoia based on
how they perceive society," said Zeber, who works at the Veterans
Affairs Department's Health Services Research and Development center in
San Antonio. "If you base your diagnosis on that symptom, you can be
misled."
Zeber's argument is supported by a panel of
academic experts who helped draft a research agenda in 2002 for the
next edition of psychiatry's manual of mental disorders.
They
wrote: "Misdiagnosis due to a different cultural perspective of
bizarreness is rather frequent." Inattention to the role that social
standards and cultural factors play in diagnosis has caused patients to
be stereotyped, they added, "with obvious negative consequences for
diagnosis and treatment."
Rethinking a Diagnosis
The
patient was a young black man named Kevin Moore. He had been picked up
by police -- after his mother called 911 and said he was making
threats. The police brought him to San Francisco General Hospital.
Moore already had a diagnosis from previous stints at other hospitals: schizophrenia.
But psychiatrist Heather Hall thought something was wrong. Patients with schizophrenia can seem to shrink into their own world.
Superficially, Moore matched that description. He was uncommunicative. But when Hall looked closer, she noticed something else.
"A
schizophrenic would be flat, he would be staring blankly into space,"
Hall said in an interview about Moore's case, given with his
permission. "His expression wasn't moving, but he wasn't blank. He
looked really, really sad."
After a thorough
evaluation, Hall changed Moore's diagnosis to depression and
reconfigured his medication regimen. She spent hours with Moore,
coaxing him to talk. Within weeks, he began opening up about a host of
interpersonal problems.
Moore said he was first
diagnosed with schizophrenia when he was 16 or 17. In an interview at
the San Francisco hospital, he was dressed in a baggy sweat shirt and
sported his hair in cornrows. His braces made him seem younger than his
age -- 24 at the time.
He said the police had picked
him up because he had talked of getting a gun. A quarrel with a friend
had escalated into a fight, and his mother had called the police. Moore
thought his mother had overreacted, and he was sullen and
uncommunicative when the police forcibly took him to the hospital.
"I probably didn't want to talk to any people," he said. "I didn't want to be there."
The
particularly close attention that Hall paid to Moore was not the only
unusual thing about his treatment. Moore was treated at one of the
hospital's "focus units" -- inpatient psychiatric centers that focus on
how culture and ethnicity influence psychiatric diagnosis and treatment.
The
units pay attention to everything -- the decor as well as the
treatment: The Black Focus Unit, for example, had African and African
American art and icons on the walls. The occupational therapy room had
photos of Vanessa Williams, Maya Angelou and Oprah Winfrey. The
hospital also had an HIV-AIDS and a Lesbian, Gay, Bisexual and
Transgender Focus Unit, as well as a Latino/Women's Focus Unit. The
Asian Focus Unit had bulletins printed in multiple Asian languages.
The specialized units have been hailed as an innovative way to put patients at ease, but they have also faced criticism.
Psychiatrist
Sally Satel described them as a type of "apartheid." Satel, who is
affiliated with the American Enterprise Institute and is the author of
"PC, M.D.: How Political Correctness Is Corrupting Medicine," said such
divisions can prompt patients to avoid examining the real source of
their mental problems.
"In its worst form, it is not
really counseling," she said of what she called multicultural therapy.
"It is a support group between two people who want to blame the outside
world."
Moore and psychiatrist Hall are both black,
but the hospital does not match doctors and patients by ethnicity.
Every unit had staff members and patients from diverse backgrounds, and
psychiatrist Lu said the wishes of patients and special needs such as
language and prior history determined where patients were assigned.
Every unit had specialized training -- staff members at the Asian Focus
Unit, for example, spoke 14 languages.
Hall said
Moore was a perfect example of why the Black Focus Unit is important:
"Maybe because I am an African American psychiatrist, maybe he was able
to show me a little more of himself for me to make an accurate
diagnosis and change his treatment to a more accurate treatment."
She
added, "Because the people who work on our unit are sensitive to the
issues of African Americans, we are much more likely to look at our
patients with eyes that aren't clouded by preconceived notions."
The
psychiatrist recalled another case of a black man diagnosed as
delusional. The man had talked about going to another city and getting
revenge on people who had killed his son.
"The
treatment plan was filled out by someone who was not part of our focus
unit," she said. "She assumed it was a delusion -- she said, 'This man
has a delusion that his son was killed in a hate crime.' " Hall checked
out the man's account. It turned out to be true.
"People
say minorities don't follow up" in psychiatric care, Hall said. "Maybe
on their first session they are not heard. Why would they come back? If
I tell a therapist I am being brutalized and he thinks I am delusional,
why would I come back?"
Other clinicians echo such
views. UCLA's Smith, who speaks Spanish, said that while making rounds
with residents, he once asked an interpreter to check whether a
Spanish-speaking patient wanted to commit suicide: "The patient said,
'I feel so bad I could die.' " But rather than convey the sense that
the patient was in distress and felt terrible, Smith said, the
interpreter told the residents, "She's suicidal."
Carl
Bell, a Chicago psychiatrist, said he once went through the medical
records of minority patients at Jackson Park Hospital in Chicago and
found many misdiagnoses. One 30-year-old woman was talking fast, was
calling people at all hours and did not seem to need sleep -- classic
symptoms of bipolar disorder, or manic-depression. But her charts
showed she had been hospitalized for schizophrenia and treated with
injectable medications, which suggested that her doctors thought her
schizophrenia was particularly severe.
"How does a
woman with a college education, a job . . . she has euphoria, pressured
speech, decreased need for sleep -- how do you get schizophrenia, chronic schizophrenia?" asked Bell, still incredulous.
Advocates
for cultural competence say both clinicians and patients are unwilling
to acknowledge that race might matter: "In a cross-cultural situation,
race or ethnicity is the white elephant in the room," said Lillian
Comas-Diaz, a psychotherapist in Washington, who added that she always
brings up the subject with patients as a way to get hidden issues into
the open -- and increase trust.
"I say, 'You happen
to be Pakistani, and I am not -- how do you feel about that?' Sometimes
they say, 'Oh, it's not important,' but when certain things happen
[later] in therapy, people remember you opened the door and they come
inside," she said.
Tina Tong Yee, a psychologist in
charge of ensuring San Francisco's mental health services are
culturally competent, said Western medicine's secular notions of
normality are sometimes an uneasy fit in a deeply religious and
increasingly diverse America.
"Seeing ghosts in my
family was part of growing up," she said. "If I brought it up in
therapy, you don't want someone to make that delusional."
Behavioral
problems are different than other kinds of ailments, she added: "What
you are reading is not a pulse, but how people act and behave and how
you react to it. In a cross-cultural setting, it's ripe for
misunderstanding."
