Privacy Law Frustrates Parents Of Mentally Ill Adult Children : Shots - Health News Even if parents are providing health insurance, they often can't find out what's happening when their adult children suffer from severe mental illness.
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Privacy Law Frustrates Parents Of Mentally Ill Adult Children

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Privacy Law Frustrates Parents Of Mentally Ill Adult Children

Privacy Law Frustrates Parents Of Mentally Ill Adult Children

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From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.


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.

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