FAMILIES ARE CUT OUT
Law leaves the loved ones of mentally ill patients on the sidelines— sometimes with tragic results
Chip and Gail Angell would have paid any price to save their son. They didn’t get the chance. Chris, 39, 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 fam-
ilies for care but don’t always recognize that they’re sick or need help.
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 judgment, 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 realize they’re sick.
Excluding families can have a devastating impact on such patients, Lieberman says.
Many health providers don’t understand what HIPAA allows them to say. As a result, they often shut out families, 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 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, a child psychologist, 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.
Opponents of Tim Murphy’s bill charge that it would trample on a 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 doctors are encouraged to reach out to 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.
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, he 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. Chris didn’t survive.
FAMILIES AS PILLARS OF CARE
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 On TrackNY, 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.
A British study found that family involvement can be lifesaving.
Deaths from unnatural causes — such as suicide, drug abuse and injuries — were 90% lower among people with schizophrenia whose families
Families are often treated “like the enemy.” Rep. Tim Murphy, R-Pa., sponsor of legislation to allow more information to be shared with caregivers
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 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.
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.
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.”
FEAR OF LIABILITY
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.”
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 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.
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. 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 age 46
Health and Human Services has tried to clarify what HIPAA does and doesn’t allow. In 2014, it issued guidance 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,” he 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.”
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.”
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 the American 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-Wis., has pledged to move Tim Murphy’s bill forward, citing the need to prevent violence by mentally ill people.
The medical profession needs to “fundamentally change the culture,” Patrick Kennedy says. “The best way to do that is to change the law.”
But groups such as the American Civil Liberties Union and the NAACP say the bills interfere with patients’ civil rights. They say they set 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.”