(Nov. 29, 2013) Being a professional advocate for better mental illness treatment policies and a personal advocate for a loved one with severe mental illness has both drawbacks (a 24/7 “job”) and benefits (I know exactly how the system can and should work for individuals in crisis and their families).
So when I found myself in a hospital emergency room in the middle of the night after my daughter’s hard-won stability of nearly two years faltered this week, I figured I was well-equipped to handle whatever the night brought.
I wasn’t.
Naturally, I knew there would be stern admonishments about protecting my daughter’s privacy under HIPAA (the Health Insurance Portability and Accountability Act of 1996), but I’d heard – and combatted – these admonitions successfully before. In a pinch, I could argue that it was in “the best interest of the individual” for her medical providers to disclose information to me (see our HIPAA at a Glance chart for more on this). In practice, this has rarely been necessary because she is willing to sign an authorization to disclose information to me.
But in this Virginia hospital ER, neither was enough to overcome the HIPAA roadblock. After the standard admonishment about the privacy act, the attending physician added that – because she was a psychiatric patient and experiencing disordered thinking – my daughter wouldn't be allowed to authorize release of her own information either.
“Wait!? So you’re telling me that because you’ve decided my daughter may not be able to make decisions in her best interest right now, you are going to leave all the decisions about what's in her best interests up to her?!? Or to doctors who've never laid eyes on her before?!?”
Exactly.
The House Subcommittee on Oversight and Investigations at the behest of Chair Tim Murphy last spring took testimony on whether HIPAA is getting in the way of treatment of those with the most severe mental illness and other psychiatric conditions.
In this Virginia ER and the hands of this ER physician, it most certainly did.
Members of the Oversight and Investigations subcommittee, under whose purview HIPAA comes, are listed here. If HIPAA has affected the care and recovery of your loved one, let committee members know. The law was intended to help patients, not hamper their effective treatment by excluding the caregivers who are most informed and most invested in their recovery.
Read more about the subcommittee hearing in our blog, “HIPAA: What’s Smoke, What’s Fire.”
DORIS A. FULLER
Executive director
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