The horrifying mass shooting in Isla Vista, Calif., last month brought up many questions. What could parents have done to prevent the tragedy? And what did they actually know about their son's mental illness?
A privacy law called the Health Insurance Portability and Accountability Act was created in part to protect patients' information. But the law, called HIPAA for short, also presents a dilemma for families of people with serious mental illnesses like schizophrenia. HIPAA restricts what family members can find out directly, leaving them to wonder how they can help a loved one who won't share treatment details.
Mark, an ordained minister in Moraga, Calif., struggles with the problem almost every day. His son Scott, 24, has schizoaffective disorder and has been hospitalized a dozen times for the hallucinations, mania and depression that it brings. (Kaiser Health News and NPR aren't publishing the family's last name to protect Scott's identity.)
Mark first noticed a change in his son just before his high school graduation. "There was a deep aggressiveness that started to emerge," he recalls. "We just thought, well, it was frustration with life or circumstances, things weren't going well in school."
And it got worse. In the middle of a standoff one day, Scott threw a small table at his mother. Scott was taken to a psychiatric hospital by the police. He was 18. Because he was still in high school, he was treated as a minor by the hospital. Mark and his wife met with Scott's doctors and set up a treatment plan.
"We saw, OK, this is kind of the way it works," says Mark, adding, "That was pretty much the last time we had that opportunity" to talk to any medical professionals about Scott.
The next time their son was hospitalized, he was out of high school. The doctors told the family that because of HIPAA, they couldn't be part of the treatment discussion unless Scott granted permission, which he refused to do.
"We were shut out of the conversation," says Mark. "And I think that was the first time we really started feeling hopeless. As long as we could feel we were in a conversation with them, we had a sense of hope. All of a sudden there was a wall that went up, and that was gone."
What little information Mark and his wife get about Scott's treatment comes from their insurance company, since Scott is still on their plan. The family hasn't spoken to any of Scott's doctors since that first hospitalization, even though one of their most pressing questions is whether it's even safe for Scott to come back home. Mark still has scars on his head from an altercation with Scott the last time he was home.
Mark is a gentle and deliberate man with round glasses and a rosy complexion. His tidy suburban home is filled with photos of his children and piles of books about faith. But, he wonders, "Why am I, as the one who is a primary caregiver, protector, provider, whatever — I've watched this kid grow up — and yet I'm out of the circle?"
That's something E. Fuller Torrey, a psychiatrist and founder of the Treatment Advocacy Center, a mental health advocacy group, hears all the time. He says the problem is that HIPAA wasn't written with mental illness in mind.
"When someone has cancer, you can make the assumption that their brain is working normally so that they can make an informed decision as to whether or not they want their loved ones to know exactly what the details of the cancer is," he says. "You can't make that assumption about people with schizophrenia or bipolar disorder."
Often, he says, sharing information with the family can be crucial to a patient's care, helping to ensure that they stick with a treatment plan, and can minimize the need for readmission to the hospital. Torrey supports a bill in Congress that would alter HIPAA to make it easier for families to access information about patients with severe illness. That's particularly important for parents who "still continue to provide the primary care for many, many of the people who are severely mentally ill," he says.
Opponents of the bill, including Jennifer Mathis, director of programs at the Bazelon Center for Mental Health Law, says that weakening privacy protections would make patients less willing to seek treatment. "They need to know that it's going to be kept confidential," Mathis says.
There are already exceptions in HIPAA that allow providers to talk to family or caregivers when the patient is a danger to themselves or others, she says. But those exceptions often are not used. Sometimes, Mathis says, providers may be "hiding behind HIPAA," so that they don't have to deal with families, or because they are afraid of being sued.
Others problems include plain misunderstanding about what the law requires and allows.
But even for doctors who thoroughly understand HIPAA, the safety exemption can be too narrow. "The vast majority of situations families find themselves in are not life and death," says Carolyn Wolf, who directs the mental health practice at New York law firm Abrams Fensterman.
The exemptions and possible changes to the law don't help Pastor Mark much. "It has been a very arduous journey, and it continues," he says. "It's had its moments of extreme anguish, a lot of tears shed, a lot of prayers prayed, a lot of just absolute puzzlement at life itself."
For now, as a father and as a minister, he's relying on faith.
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AUDIE CORNISH, HOST:
And I'm Audie Cornish. The rampage by a 20-year-old man last week in Isla Vista, California has once again sparked a public conversation about mental health. Elliot Rodger killed six college students and then himself. The attack raises questions about when doctors should share information about a patient with his or her family. The privacy law known as HIPAA was created to help protect that information, but it also presents a dilemma. Families of people with serious mental illnesses say they need information to care for their loved ones, and they need it even when the patient doesn't want it shared. Jenny Gold has been speaking with a different family to better understand the issues.
JENNY GOLD, BYLINE: Mark started to notice a change in his son just before his high school graduation. The family lives in Northern California, where Mark is an ordained minister.
MARK: When my son, Scott, was 18-years-old - a little bit before, but - there was a certain kind of deep aggressiveness that was starting to emerge. We just thought, well, this was just frustration with life or circumstances. Things hadn't been going well in school.
GOLD: But he kept getting worse. In the middle of an argument one day, Scott threw a small table at his mother. The police were called and Scott was taken to a psychiatric hospital. Still in school, he was considered a minor by the hospital. So Mark and his wife were invited to meet with Scott's doctors and set up a treatment plan.
MARK: And so we thought, oh, this is kind of the way it works. Well, that was pretty much the last time we had that opportunity.
GOLD: Scott didn't get better. The next time he was hospitalized, he was treated as an adult, and everything was different. The doctor said that because of the privacy law, HIPAA, they couldn't talk to the family unless Scott granted permission, which he didn't.
MARK: We were shut out of the conversation. And I think that was the first time we really started feeling hopeless. As long as we could feel that we were in a conversation with them, we had a sense of hope. All of the sudden, there was a wall that went up, and that was gone.
GOLD: Scott didn't want to talk to us, and we're not using the family's last name to protect his identity. He's 24 now, and he's been hospitalized a dozen times with the diagnosis of schizoaffective disorder. What little information his parents get comes from their insurance company. He's still on their plan. They get the bills, and he's been living at home. But they haven't spoken to his doctors again. Mark still has scars on his head from a recent altercation with his son.
MARK: It's like, why am I, as the one who is a primary caregiver, protector or provider - whatever - I watch this could grow up, and yet, I'm out of the circle. I'm not there. I can't be there to be of help.
GOLD: Have you ever asked one of his providers, like, why can't you talk to me?
MARK: I don't know if I've actually really gotten close enough to a doctor to ask him that.
E. FULLER TORREY: I hear this all the time from families who are very frustrated.
GOLD: Dr. E. Fuller Torrey is a psychiatrist and founder of the Treatment Advocacy Center. He says the federal privacy law just wasn't written with mental illness in mind.
TORREY: Well, when someone has cancer, you can make the assumption that their brain is working normally, so that they can make a informed decision as to whether or not they want their loved ones to know exactly what the details of the cancer is. You can't make that assumption about people with schizophrenia or bipolar disorder because about half of them do not.
GOLD: He says sharing information can be crucial.
TORREY: Mothers and fathers still continue to provide the primary care for many, many of the people who are severely mentally ill.
GOLD: Torrey supports a bill in Congress that would make it easier for families to access information for patients with severe mental illness, but not all advocates think that's a good idea. Jennifer Mathis is with the Bazelon Center for Mental Health Law.
JENNIFER MATHIS: In order for people to feel like they can say important things to a mental health provider, they need to know that it's going to be kept confidential.
GOLD: She says weakening privacy protections might make patients less willing to seek treatment. And there are exceptions in the law if the patient might be a danger to themselves or others.
MATHIS: It's not HIPAA itself. It's that providers, for any number of reasons, are not talking to family members.
GOLD: Those reasons could be anything from not fully understanding the HIPAA law, to a fear of being sued.
MATHIS: People often talk about providers, quote, unquote, hiding behind HIPAA. And I think that is very much what happens.
GOLD: So changing the law, Mathis says, wouldn't fix the problem. That's of little comfort to Mark in California.
MARK: It has been a very arduous journey, and it continues. It's had its moments of extreme anguish - a lot of tears shed, a lot of prayers prayed, a lot of, just, absolute puzzlement at life itself.
GOLD: For now, as a father and as a minister, he's relying on faith. For NPR News, I'm Jenny Gold.
CORNISH: Jenny Gold is a reporter with our partner, Kaiser Health News. Transcript provided by NPR, Copyright NPR.