I’ve lost my friend Dan. I don’t know where he is. I don’t even have a picture of Dan, or I’d put him on a milk carton.
I first met Dan over 10 years ago, when he used to drive his giant 1970s car (more like a boat) over to the nursing home to visit his wife Nellie. He used to visit her daily, and would always stop to chat with me in the halls, and we became good friends.
Nellie passed away, and I didn’t see Dan for many years after that, until at 91 years old, HE had to move into the same nursing home himself. He and I would spend some time together each week. It was like old times again.
That is until yesterday, when I went to the nursing home, and Dan was gone. His room cleaned out. Maybe he moved home. Maybe he passed away. Maybe he went to Hospice. I don’t know, and nobody would dare tell me.
The reason I don’t know the whereabouts of Dan, is because of an oppressive bit of legislation known as HIPAA laws. HIPAA has tormented me for 15 years now.
Let me tell you a little about HIPAA. First of all, HIPAA is more than just about privacy. It stands for the Health Insurance Portability and Accountability Act of 1996. If you want to learn all about it, you’re going to need a law degree and the stamina to read 1000s of pages of legal stuff.
Honestly, I can’t claim to know a lot about HIPAA, because I’m not a lawyer. In fact some HIPAA experts out there might read this and tell me I don’t know what the heck I’m talking about. So take this account for what it is, my personal experience with one small aspect of HIPAA. What I’m going to focus on here is the application of HIPAA to privacy, especially as it affects non-family caregivers.
I know, it’s not good to be anti-privacy. I’d do just as well being anti-baby or anti-puppy than being anti-privacy. But hear me out.
One of the typical implications of HIPAA privacy is this: health care workers cannot share health information about a patient, except with family members, or those people specifically cleared by family members. From day one, employees are warned of the grave consequences (termination) of violating HIPAA. The end result is that health care workers are extremely tight-lipped and fearful around non-family caregivers. Know any non-family caregivers? ME! (And every other Friends Across the Ages volunteer!)
So nursing homes put the fear of God into their employees about privacy. When I ask a question about a resident, my request is often scoffed at. I suppose I can’t blame the employees personally – if they answer me, it might cost them their job.
I believe that nursing homes, at least at the corporate level, actually like this aspect of HIPAA. In general, HIPAA is a thorn in their side, but this is one silver lining. The reality of the situation is, the fewer people asking questions, the better. It just means fewer people to please, fewer people who might find out something that shouldn’t be known. People asking questions are burdensome, at least strictly from a business standpoint. And perhaps, who is to blame them for feeling this way? One nursing home administrator told me there are 17 lawyers in town who do nothing but sue nursing homes, all day, every day. That’s over 2 lawyers PER nursing home!
But here’s the problem. Some people don’t have any family. Or, they only have distant family – a cousin or niece, an elderly sister who lives in another state, etc. We meet many such residents in the nursing home, for precisely that reason – they have no family to care for them! In today’s society, non-family caregivers are becoming more and more important. Our elderly are counting on friends and neighbors to care for them. My wife always says, “Friends become our chosen family”.
HIPAA is inhibiting my ability to care for my friends. They are running a marketing campaign to hype the joys of HIPAA. They have posters up that say “HIPAA: Protecting patient’s privacy!” with a picture of Hipaa the lovable Hippo on it. I kid you not! At this moment I’m in no position to take down this behemoth called HIPAA. But I’m at least going to use the small power of my blog to educate my readers: don’t believe the hype.
My suggestion is that we take a survey, and ask everyone. “If you were in a hospital or nursing home, would you mind if the nurses told your friends some basic information about your medical condition? If you died, or got transferred to another facility, would you mind if the nurses told your friends where you went?” I think most people would NOT mind, and therefore I think that the presumption should be that most people don’t want this kind of “privacy”, and as a patient you have to specifically “opt-in” if you want it.
I’m not asking to block anyone’s right to privacy. I’m simply asking, can I opt-out? Can I waive my right? Shouldn’t patients be asked if they’d like extreme privacy or not? I’m exposing HIPAA privacy for what it is: a road block to friends, neighbors, and other caregivers (our “chosen family”) who want to minister to us in our time of need. And a convenient tool to save health care institutions from having to deal with questions from meddling little nuisances, like me.
UPDATE, OCTOBER 4TH: I FOUND DAN! He is back at the nursing home now. Turns out he had to go to the V.A. Hospital for a few days. I got his niece’s phone number today too, so I won’t lose him again. Life is good!