PRIVACY LAW LEAVES LOVED ONES ON THE SIDELINES
WITH TRAGIC RESULTS
A law's unintended
consequences
FAMILY STRUGGLED TO SAVE SON
Chip and Gail
Angell would have paid any price to save their son.
They weren’t
given the chance.
Their
39-year-old son Chris, who suffered from schizophrenia, refused to allow his
doctors to talk to his parents, even though they were his
primary caregivers.
So the Angells
weren’t able to correct their son’s medical chart, which incorrectly listed the
young man as uninsured. They weren’t able to plead with doctors not to base
their son’s treatment on cost.
“Whenever we
tried to get Chris into the hospital, we always ran into the fact that doctors
wouldn’t talk to us,” says Chip Angell, of Brooklin, Maine, who
says his son’s doctor never returned his calls. “Some doctors think
they’re protecting the privacy rights of the patient. Others simply use privacy
as an excuse because they don’t want to talk to someone with an idea contrary
to their own, or because they can’t be bothered to call someone back.”
Although a
federal law on patient privacy was written to protect patients’ rights, the
Angells and a growing number of mental health advocates say the law has harmed
the care of adults with serious mental illness, who often depend on their
families for care, but don’t always recognize that they’re sick or that they
need help.
Advocates say privacy law prevents care of
mentally ill. Chip Angell lost his son Chris to suicide.USA TODAY
The federal
law, called the Health Insurance Portability and Accountability Act, or
HIPAA, forbids health providers from disclosing a patient’s medical information
without consent.
Unlike patients
with physical conditions, people with serious mental illness often need
help making decisions and taking care of themselves, because their illness
impairs their judgement, says Jeffrey Lieberman, chairman of
psychiatry at the Columbia University College of Physicians and
Surgeons and director of the New York State Psychiatric
Institute. In some cases, patients may not even realize they’re sick.
Excluding
families can have a devastating impact on patients like these, Lieberman says.
Many health
providers don’t understand what HIPAA actually allows them to say. As a result,
they often shut families out, even in circumstances in which they’re legally
allowed to share information, says Ron Manderscheid, executive director of
the National Association of County Behavioral Health and
Developmental Disability Directors.
Some doctors
refuse to even listen to families such as the Angells, although doing so
doesn’t violate HIPAA. Others exclude families even when patients
themselves don’t object.
While many
people in the mental health community agree there’s a problem, advocates
disagree about how to fix it.
Three members
of Congress — Rep. Doris Matsui,
D-Calif., Sen. Chris Murphy, D-Conn. and Rep. Tim Murphy,
R-Pa. — have introduced legislation to educate health care providers
about what HIPAA does and doesn’t permit.
Tim Murphy also
wants to change the law itself, creating a special exception to the
privacy rule in cases in which the health of people with serious mental illness
would suffer if their families aren’t involved in their care.
When families
can’t care for loved ones with serious mental illness, patients pay the price,
sometimes ending up homeless, in jail or dead, says Tim Murphy, a child
psychologist. “The need for this bill,” he says, “is measured in lives lost.”
Opponents of
Tim Murphy’s bill charge that it would trample on patient’s privacy rights.
Without the guarantee of confidentiality, some people with mental illness would
avoid seeking treatment, says Jennifer Mathis, director of programs at the Bazelon
Center for Mental Health Law.
Some say that
the medical profession needs to undergo a cultural change, so that doctors are
encouraged to reach out the caregivers of people with serious mental illness,
rather than shun them.
The Angells say
HIPAA denied them the chance to prevent a tragedy.
When their son
was discharged from the hospital, a doctor wrote him a prescription for
low-cost pills instead of a more expensive injectable treatment, Chip
Angell says. That was in spite of the fact that the young man had a long
history of refusing to take pills and was “doing very well” on the injections,
medical records show.
“If we had been
able to talk to the doctor,” says Chip Angell, his voice breaking, “we
could have told him that no matter how much this drug cost, we’d have paid for
it.”
Their son, a
gifted tennis player with a 7-year-old daughter, sank into a deep depression as
the effects of the injectable medication wore off.
In April 2012,
six weeks after being discharged from the hospital, their son tried to kill
himself by attaching a hose to the exhaust pipe of the
family Volvo and filling the interior with deadly carbon monoxide
gas. The car overheated and caught fire, with their son inside.
He didn’t
survive.
Psychiatrists have
a long history of keeping families at arm’s length, says Harvey Rosenthal,
executive director of the New York Association of Psychiatric Rehabilitation
Services. For much of the 20th century, many psychiatrists saw parents as the
source of a patient’s problems.
Yet today, a
growing body of research demonstrates that families play a crucial role in
recovery from serious mental illness, says Lisa Dixon, a professor of
psychiatry at Columbia University Medical Center in New York.
Family
involvement is “extraordinarily important” for people with serious mental
illness, says Dixon, who directs OnTrackNY, an intensive, early
intervention for young people who experience psychosis for the first time.
“Often, you have family members who are the first to notice that something is
wrong, who are there to try to help their child and get their child into some
sort of treatment.”
A
recent National Institutes of Health study, which
focused on such early intervention, found that family education and support
were key parts of a package of care. Young people who received this care had
better quality of life and were more likely to return to work or school,
according to a 2015 study published in the American Journal of Psychiatry.
Deaths from
unnatural causes – such as suicide, drug abuse and injuries – were 90% lower among people
with schizophrenia whose families were involved throughout their care,
according to a study that followed more than 500 patients over 10 years,
published last year in The Journal of Nervous and Mental
Disease.
Families often
provide food and housing for their loved ones, help them apply for work or
school programs, drive them to appointments, pick up prescriptions and
coordinate the care of countless doctors, nurses and social workers. When
needed, families bail them out of jail.
“When everybody
else goes home, the families that are the ones that step up and provide care,”
says Ron Honberg, national director of policy and legal affairs at
the National Alliance on Mental Illness, or NAMI. “They are always there,
when no one else is.”
Many caregivers
feel unprepared to help loved ones with serious mental illness, which can
strike suddenly in adolescence or young adulthood. Many say they get little or
no guidance from health providers.
"I never
really understood the illness," says Creigh Deeds, a Virginia state
senator whose 24-year-old son killed himself in 2013, after stabbing his father
repeatedly.
"I wanted
to go through some things that I had observed and bounce ideas off them, find
out what they thought I should be doing, what their long-term view for Gus
was," says Deeds, an attorney who has become a mental health advocate
since his son's death. "I wanted to talk to someone to develop a long-term
plan for my son.”
Deeds says
health care providers refused to provide even short-term guidance about what to
do after his son was discharged from the hospital. "Twice, my son came
home from hospitals to me," Deeds says "I was never given
instructions. I was never given help. ... Without that information, I was
wallowing in ignorance.”
Pat Milam looks out the window of
his dining room in Harahan, La. Pat and Debbie Milam’'s 24-year-old son,
Matthew, took his own life in 2011, eight days after he was discharged from a
psychiatric ward in New Orleans.
(Photo: Edmund D Fountain, for
USA TODAY)
Pat Milam,
whose son had schizophrenia and bipolar disorder, says he begged the
doctors treating his son at a psychiatric hospital for instructions in how to
take care of someone so sick. When hospital staff ignored his emails, Milam
asked them to walk him through the care of a hypothetical adult child.
“I sent a fax
to the hospital administrator,” says Milam, of Harahan, La. “I said,
‘We don’t have to talk about my son. Let’s talk about someone who is severely
mentally ill who is about to come home from the hospital.’”
No one answered
him.
Milam’s son
killed himself at age 24 in 2011, eight days after leaving the hospital.
NAMI has long
recognized that caregivers need help. Its Family to Family
program educates people about the nature of mental illness and ways to provide
support, Dixon says. Families who have a better understanding of their loved
one’s condition can provide better care, she says.
“Family members
need information,” Dixon says. “They need to know how to help their child or
loved one. They’re stressed out and anxious and terrified and guilt-ridden.”
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