HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996.
It is a commonly misunderstood law, even by those in healthcare. “I can’t, HIPAA” is commonly heard (see photo for the response I commonly have when I hear this). Recently I was trying to pay one of my over 18 year old kids medical bills. There was a glitch with the billing and insurance (imagine that!), so I called to tell the billing office that I was working on it, trying to protect my little precious from the collections thugs you know! They initially wouldn’t even listen to me, (incorrectly) citing “HIPAA.” I explained to them that all HIPAA said was that they couldn’t GIVE ME information, it doesn’t say anything about me giving them information, which was all I wanted to do. This is a common misunderstanding.
A recent article in USAToday talks about the unintended consequences of HIPAA, especially in regards to keeping families out of the loop regarding care of those with mental illness. While I find the tone of the article adversarial, I think there are a few important points. Most importantly, HIPAA is not a law that prohibits listening. If anyone uses it in this way, they need to be gently, respectfully and firmly corrected. HIPAA does not prohibit family members and caregivers from providing information to the care team, it only prohibits release of information about a patient with out a signed consent, or in certain, very specific circumstances. This is of course where it gets complicated. Ideally, everyone would have a form on file naming a healthcare agent, the person they want to make decisions for them when they are incapable of making them. Unfortunately, when someone becomes unable to make thier own decisions is complicated as well, especially in cases of behavioral illness, substance abuse and dementia. It is very difficult to determine (or for folks to agree on) when people are unable to make their own decisions. In the U. S., the default has always been to “err” on the side of individual rights, which makes if difficult when people are making decisions that others feel are inappropriate. There is no easy answer to this issue. My suggestion would be to work collaboratively with your doctor and care team. They did not make the rules and often find them as difficult to deal with as you do. If they are not listening to you, that is a different issue and needs to be dealt with as noted above. If the patient is admitted to the hospital, you can ask for an assessment of a patient’s medical decision-making capacity. Most hospitals’ have a medical ethics committee, this may also be a helpful resource.
Misinterpretation of HIPAA can also be a problem with coordinating care, with the belief that physicians and other providers etc. can’t discuss care. This is not true. Providers can discuss information for the purpose of ongoing care. Advocate for yourself and your loved ones to be sure that these conversations DO take place. Transitions in care are where many balls get dropped. Communication and coordination can prevent this.
Healthcare, HIPAA, COBRA, EMTALA and the list goes’ on. All complicated issues. I hope this helps a little.