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HIPAA on My Mind

By Caitlin Littlefield | Wednesday, May 1, 2013

Below is a post to the Blue Shirt Blog by Madge Kaplan, IHI's Communications Director.

It’s 4:30 AM and I’m woken up by the home phone ringing in the middle of the night. When I pick up, a woman identifies herself as calling from my elderly mother’s medic alert company. She tells me that my mother pushed her button a short while ago and an ambulance was called. “Did the ambulance come?” I ask. “Do you know where she was taken?” “We don’t know…they won’t tell us that.” “Who’s ‘they’?” I learn it’s the town’s fire department that acts as the ambulance dispatcher. I’m puzzled. “Why can’t they give you this information so you can relay it to a family member?”  “HIPAA,” she tells me, feeding my adrenaline rush. Correctly sensing how unsatisfying I’m finding this, the woman on the phone encourages me to call the town emergency dispatcher. I hang up and do that and get nowhere. “We can’t tell you whether the ambulance came,” a male voice says, “or which hospital she was taken to… HIPAA.” “HIPAA? But I’m her daughter. I’m the first listed family member the medic alert company is supposed to notify.”  “Sorry, how do I know who you are? You could be anybody. Call the medic alert company back, they should be able to tell you more.”  “But, they said to ask you.” “No can do,” he says. I relay this back to the medic alert company, calling on my land line because, by this time, I’m also using my cell phone to try and reach my mother on hers. I’m also about to jump into the car in case the 15-minute ride to my mother’s apartment will at least give me the reassurance that she’s not still home, maybe lying on the floor, unconscious!  Just as the medic alert company is telling me that the only thing they can offer is a list of my mother’s preferred hospitals in case of an emergency, my mother picks up. She had a scare with her blood pressure, but she’s okay and waiting to be seen. I also find out the name of the hospital.

I have recently run into “HIPAA” as an explanation for all sorts of reasons to be told nothing the latest instance with another family member who was hospitalized in an emergency. Apparently being listed on health care proxy forms (or being related to the individual) is not a ticket to information when you may need it most. I have always welcomed and supported the privacy protections the 1996 law ushered in, but I’m wondering whether others are now finding the very utterance of “HIPAA” has become the very opposite of what’s needed for patient- and family-centered care. Let me/us know your thoughts.

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