The federal HIPAA law protects patient privacy, but some say it can shut out family members trying to help relatives who are experiencing mental health crises.
LEILA FADEL, HOST:
A visit to a doctor’s office often means patients have to sign a HIPAA form. The Health Insurance Portability and Accountability Act limits when medical information can be shared. But some advocates say those protections can also get in the way of care. Maxwell Howard from member station Interlochen Public Radio brings us the story of a mother and son in Michigan.
MAXWELL HOWARD, BYLINE: Laurie is 74 and retired. But when her son, Steven, was diagnosed with a schizoaffective disorder a few years ago, she became his sole caretaker. We’re only using first names here to protect Steven’s medical privacy.
LAURIE: One of the things that he does when he goes really manic or psychotic or whatever it is, is he starts emptying things. And so he started taking all of the antiques out into the front yard. That was the first time he was hospitalized.
HOWARD: Because Steven is in his 40s, Laurie is often excluded from his emergency care at different hospitals. She’s now pursuing temporary medical guardianship so providers can speak with her directly. But for now, she says, HIPAA still makes it difficult to help.
LAURIE: He came out of the hospital once with extreme diarrhea, extreme thirst. And he said his heart hurt, which, if you look at some of those medications, is a side effect. When I call, they won’t talk to me. They won’t tell me what he’s been on.
HOWARD: Laurie says she’s repeatedly asked staff at Munson Medical Center in Traverse City to notify her when her son was released. But they often discharged him without notice, including once on a cold winter night in his pajamas and slippers.
LAURIE: He walked home. How he didn’t have frostbite, I don’t know.
HOWARD: Munson declined to comment on individual cases. Dr. Charles Dike is a professor of psychiatry at the Yale School of Medicine.
CHARLES DIKE: It’s a very difficult, challenging situation.
HOWARD: He says HIPAA is important especially to these kinds of patients due to stigma around mental health.
DIKE: It’s easier to tell people that, you know, I fractured my humerus, I fractured my thigh, and I was in the hospital for that. It’s much more difficult to tell people that I had a mental break. And so the protections that HIPAA has is to allow individuals to take control of what they disclose related to their mental health.
HOWARD: Still, Dr. Dike says it’s important to keep families informed, especially when patients live at home.
DIKE: You’re balancing the rights of that individual with the rights of the society to be free of harm.
HOWARD: Critics say it’s necessary to change the law. They call the restrictions HIPAA handcuffs. Nearly a decade ago, a congressional effort to eliminate those restrictions fell flat. And since then, recent efforts by grassroots groups petitioning for reform have not been successful. Jerri Clark is an executive at the Treatment Advocacy Center, a Virginia-based nonprofit which advocates for people with severe mental illness. She says the fear of violating HIPAA makes many providers overly cautious because violations can result in fines up to $1.5 million a year, criminal charges and even jail time. However, she says, that caution can come at patient expense. And there’s no reason to exclude caregivers.
JERRI CLARK: I think there’s been a lot of misinformation about HIPAA and for training around HIPAA. So it’s easier for providers to say I can’t talk to you.
HOWARD: Clark says that better provider training and a shift away from fear-based HIPAA interpretations could help families stay informed without sacrificing privacy. But until that happens, many caregivers will be left to navigate mental health crises in the dark, trying to keep their loved ones safe without all the information needed.
For NPR News, I’m Maxwell Howard in Traverse City.
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