PRIVACY LAW LEAVES LOVED ONES ON THE SIDELINES – WITH TRAGIC RESULTS.
A law's unintended consequences
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.”
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.
The importance of involving families
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.
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 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, 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.”
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.
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 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, 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.”
Changing the law
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.
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.”
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 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-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
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 andDomestic 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 she directs have agreed to allow contact with families, she says.
“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.
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.'"
H/T: USA Today