HEALTH PROVIDERS, CAREGIVERS BOTH FRUSTRATED
(Photo: Mark
Stehle, AP Images for TCOPR)
When in doubt, health providers tend to err on the
side of withholding information, says Patrick Kennedy, a former Rhode
Island congressman who advocates for better care of the mentally ill.
Hospital administrators, accustomed to avoiding
malpractice suits, have brought the same defensive approach to patient privacy,
Kennedy says. “The medical community’s perception is that there’s a
liability if they share any kind of information,” he says.
Tracey Davis-Witmyer says health care
providers have often refused to talk about her brother's care, even when HIPAA
allows it.
The Reading, Pa., woman takes care of her
38-year-old brother, who has bipolar disorder and intellectual disabilities.
Although he lives with her, her brother often wanders off. Once, he was missing
for a week.
Yet when Davis-Witmyer went to a local emergency room
to search for him, hospital staff refused to even acknowledge whether he was
there. They told her that confirming his presence in the hospital would have
violated HIPAA. It would not have.
“Doctors are afraid to say anything because they think
the HIPAA police are at the door,” says Manderscheid, of the National
Association of County Behavioral Health and Developmental Disability Directors.
In fact, HIPAA fines are much rarer than many health
providers assume.
The Department of Health and Human Services,
which oversees HIPAA enforcement, has fined health providers just 30 times
since 2003, when the privacy rule took effect, for a total of $32.3 million.
None of these fines involved the care of people with mental illness or their
caregivers.
Caregivers aren’t the only ones frustrated by HIPAA.
The law sometimes can prevent doctors from sharing
information with each other, Lieberman says. That has made it difficult for
Lieberman to consult on the care of other patients.
James Cornick of
Des Moines stands for a portrait in his home holding a binder with information
on his son Jeff, who committed suicide in the Polk County Jail.
(Photo: Zach
Boyden-Holmes, The Des Moines Register)
Although James Cornick’s son, who suffered from
bipolar disorder, went to jail six times, his medical records never followed
him, even within the same correctional facility, says Cornick, of Des
Moines, Iowa. So when Cornick’s son was arrested in January 2015 for a parole
violation, no one put him on suicide watch. He strangled himself in his jail
cell at 46.
Health and Human Services has tried to clarify what
HIPAA does and doesn’t allow. In 2014, it issuedguidance about when health providers are allowed to share information.
Bills introduced in the House of
Representatives by both Tim Murphy, the Pennsylvania Republican, and Doris
Matsui, the California Democrat, would require the Secretary of
Health and Human Services to include that guidance into regulation, giving
it the force of law.
Legislation from Matsui and Connecticut's Sen. Chris
Murphy also would provide $5 million this year, along with additional
funding in future years, to educate health providers about HIPAA.
But guidance and education won’t be enough to fix a
broken law, Tim Murphy says.
Under HIPAA, families are often treated “like the
enemy,” Tim Murphy says. “What we’re trying to allow is for families to
facilitate care. We call it compassionate communication.”
His bill would allow health providers to disclose a
patient’s diagnosis, treatment plan, appointment schedule and medications to a
“responsible caregiver” if the patient has a serious mental illness, and if the
information is needed to “protect the health, safety or welfare of the
individual or general public.”
Rep. Tim Murphy,
R-Pa., chairs a congressional hearing on the shortage of beds for in-patient
psychiatric care.
(Photo: H. Darr
Beiser, USA TODAY)
According to Tim Murphy's bill, health providers could
share information if it’s needed for “continuity of treatment;” if failing to
disclose the information would “contribute to a worsening prognosis or an acute
medical condition;” or if the patient has a “diminished capacity to fully
understand or follow a treatment plan” or could become “gravely disabled in
absence of treatment.”
Tim Murphy says his bill doesn’t allow providers
to share psychotherapy notes, which are not included in medical records.
Several prominent mental health groups – including NAMI,
the Treatment Advocacy Center and theAmerican Psychiatric
Association –
have endorsed Tim Murphy’s bill.
“It just doesn’t make sense to shut families out of
the kind of basic information that they need to serve as caregivers,” NAMI's
Honberg says. “Nobody is talking about revealing intimate details of the
psychotherapeutic relationship or sexual history or that kind of stuff. We’re
talking about diagnosis, treatment and risk factors.”
House Speaker Paul Ryan, R-Wisc., has pledged to
move Tim Murphy’s bill forward, citing the need to prevent violence by people
who are mentally ill.
The medical profession needs to “fundamentally change
the culture,” Patrick Kennedy says. “The best way to do that is to change the
law.”
An alternative approach
EDUCATING HEALTH PROFESSIONALS
Some advocates for
people with mental illness say Tim Murphy's bill goes too far.
The proposals have
encountered stiff opposition from groups such as the American Civil
Liberties Union and the NAACP, which say the bills interfere with
patients’ civil rights. They say the bill sets a dangerous precedent that could
allow lawmakers to begin stripping privacy protections from people with other
medical conditions.
Assurances of
confidentiality are critical for people with mental illness, perhaps “more than
in any other area,” says the Bazelon Center's Mathis. The stigma of mental
illness already prevents many people from seeking treatment.
“Privacy rights are
critical for people with mental illness, just as they are for anyone else, to
ensure that they get good treatment,” Mathis says. “If people don’t feel like
they have privacy, they aren’t going to be forthcoming when they see a medical
professional.”
Policy makers have
other ways to encourage doctors to engage families, according to Mathis.
Hospitals and health
insurers could require health providers to work with families as part of their
contracts, she says.
“That would do more
than these bills in Congress, which eviscerate people’s privacy rights,” Mathis
says.
Some advocates for
domestic violence victims also oppose the bills, arguing that they could allow
abusers to gain access to a spouse’s mental health records.
Although Tim Murphy’s
bill states that health information may not be shared with someone who has a
“documented history of abuse,” that may not be enough to protect domestic
violence victims, according to a statement from the National Taskforce to End
Sexual and Domestic Violence. The group notes that many abusers have no
criminal record.
Rep. Matsui, who aims
to simply clarify HIPAA rather than change it, says she’s concerned
that the exceptions to HIPAA included in Tim Murphy’s bill could create even
more confusion.
“If you give that
list to a health provider, you are going to have more instances where people
don’t share,” Matsui says. “Providers will say, ‘I can’t meet all these
criteria.’”
Changing HIPAA
wouldn't necessarily change the way doctors and hospitals act, says Mark
Rothstein, a former advisor on health privacy to the Secretary of Health and
Human Services. He notes that many states have their own patient privacy laws.
Columbia's Dixon
says she can usually persuade patients to include their families, in spite
of these obstacles.
People
with mental illness are often willing to include their families in their care,
if doctors take the right approach, Dixon say. More than 90% of the patients in
the OnTrackNY program that she directs — which aims to intervene early, before
people have been sick for very long — have agreed to allow contact
with families, she says. People often have more self-awareness early in their
illness and may be more likely to recognize that they need help.
“We’re all ambivalent
about our families,” Dixon says. “Why wouldn't someone with mental illness
be ambivalent, too? If someone were to ask me, ‘Lisa, is it OK if I talk
to your family members about your care?’ I would say, ‘It depends,’” Dixon
says. “I might say, ‘I don’t want you talk to this family member, but this one
is OK.’”
If patients are
reluctant to include their parents in care, Dixon asks them why. “We ask, ‘What
are your concerns? Why would not want your family involved in your care?’
Sometimes, they don’t want to be a burden.” With this approach, Dixon says,
“it’s only the rare case who doesn’t give permission. And if you don’t get
permission the first time, you ask again in a few weeks.”
Yet family
involvement is all too rare. Although early intervention programs like
OnTrackNY routinely include families, those programs are the exception, not the
rule.
“We’re not anywhere
close to where we need to be in this,” Dixon says.
Lisa Powell says
she wishes her son's health care providers had worked harder to include her.
Her son, Oscar
Morlett, began acting differently just before he turned 19. He stopped
seeing his friends; his speech became a jumble. At first, Powell assumed
her son was using drugs and sent him to rehab. “I know how to deal with
situations like that,” says Powell, of Orange County, Calif., who has
other family members who suffer from addiction, “but this was beyond me.”
Her son's condition
deteriorated; he became psychotic and sometimes threatened her with
violence. Yet no one has ever told her his diagnosis, although he's now 23,
Powell says. There were even times when his health providers refused to
tell Powell the time and date of his next mental health appointment, even
though she was expected to drive him.
Oscar Morlett, who
suffers from serious mental illness, as photographed by his mother, Lisa
Powell.
(Photo: Lisa
Powell)
Her son began
to imagine that his stepmother was a spy. On Aug. 9, 2013, Morlett was
arrested and charged with killing his stepmother with an ax. After more
than two years in jail in Orange County, a judge finally found him
competent to stand trial in February, Powell says.
“No one would listen
to me,” says Powell, who visits her son in jail once a week. Because he
has signed a waiver, health staff at the jail are now allowed to update her on
his care.
During one visit,
Powell says her son was in despair over his mental illness, and what had become
of his life. "He said, 'Mom, I didn't ask for this. Please pray for
me.'"
