Thursday, September 5, 2013

How HIPAA fails patients and their families

When HIPAA passed in 1996, I was a bright eyed college student in a Bioethics program who analyzed the law in all its intricacies. We took it apart, we discussed every piece of it thoroughly. We saw the reasons for the development of the law, the necessity for it. We debated the hugely important issue of patient autonomy, and understood why it had to be protected.

One of the classes in that program was based in a county hospital, and each week we rounded with physicians and nurses in different parts of the hospital so that we could begin to appreciate the reality of ethical dilemmas in medicine.

When I was in law school, I worked in a hospital's risk management office where we dealt with not just the ethical conundrums and the personal implications, but with the consequences of them down the road in terms of litigation and financial responsibility as well. We were called in to help make the hard calls about letting abused children be removed from life support, about families with conflicting desires about life or death decisions, about who is on the hook when a baby suffers oxygen deprivation at birth. I spent countless hours revising policies and procedures to keep in line with changing laws, many of which revolved around HIPAA.

I've studied HIPAA in an academic setting. I've seen it through the eyes of those who have to deal with it at the bedside. I've dealt with it from an institutional standpoint.

None of it, not a single bit of it, prepared me to be on this side, as the family member routinely denied access to information.

HIPAA was designed to protect patient autonomy, to ensure that people are given the power to make their own health care decisions, and for the vast majority of people out there it has been a blessing, albeit one that creates mountains of repetitive paperwork.

It's truly a bureaucratic nightmare in terms of the amount of paperwork. Just ask anyone that works in the industry or who has been to the doctor in the last fifteen or so years.

HIPAA has a dark side though, and it's something that most people never have to experience or even think about until and unless they are right there in the thick of it.

HIPAA allows people to decide who has access to their health care information. It allows patients the choice of what and how much they want other people to know, even spouses and parents in some cases.

HIPAA works on the assumption that a patient will be autonomous, reasoned and able to make clearly thought out decisions about their care.

HIPAA ignores the fact that there is an entire subpopulation of people who can't or won't make those decisions for logical reasons, and that those same people will refuse to allow anyone else access to their information.

HIPAA doesn't work in the best interests of patients who can't act in their own best interests, and it makes it almost impossible for their family to do anything to help. If the patient hasn't been deemed incapable of making their own decisions by a court and the court has not appointed someone to make them, legally no one can do anything about it.

Funny....but not funny haha.
When you have a family member who has mental health issues, but refuses to seek any kind of help, there is nothing you can do. Until and unless they are a danger to themselves or someone else, no one can, and even then any help they can be forced to receive is temporary and only pertains to the imminent threat.

When you have a family member who attempts suicide, then tells the people at the mental hospital that they can't talk to you, their hands are tied. They can't tell you anything. In my experience, they couldn't even tell me if the person in question was dead or alive.

When you have a family member who is released after being held for their suicide attempt on the condition that they will stay on their meds and follow up with a therapist, there is nothing you can do to make them keep their word. They can walk out, toss the meds in the trash immediately and carry on like nothing happened.

When you have a family member who has complex health problems, but is paranoid that you do something against their wishes because of their mental health issues, there is no recourse, even if the paranoia is part of their mental health problems.

When you have a family member whose mental health condition enables them to be very a convincing liar to people when they first meet them, they can easily convince others that they are stable and mentally well, negating the need for a full evaluation.

When you have a family member like this, police and social welfare employees will ask you why you don't petition the court for conservatorship, but then they remember how convincing this person was the first time they met and realize that this person can most likely persuade a judge of their stability too. Trust me, I have been asked this question more than once.

When you have a family member like this and they are near death but still refuse to allow the doctors and nurses to even tell you what is going on, you quickly realize that there is quite literally nothing that you can do.

When you have a family member like this, you call and call and call and no one can tell you anything.

When you have a family member like this, eventually you give up banging your head on the wall.

HIPAA has failed you.

HIPAA has also failed the patient because it has effectively prevented them from ever getting the help they actually needed.

And there's not a damn thing you can do about it.

HIPAA has good intentions...but you know what they say about that...

The road to hell is paved with good intentions. 
~some really old proverb

I'll vouch for the accuracy of that one.


  1. This is scary. I have a son who is bi-polar. Obviously I get a say in his care now, but what happens 4 years from now?

    1. You can no longer have any say in his care. I could not get my son properly diagnosed when he was a child. They(school system and Medical system) said they did not want to label him(1990's) then he turned 18 and that was it. I could only watch the train wreck his life became.

  2. Sometimes even when you have access to the information there still isn't anything you can do. I totally get your frustration. We are going through something similar with Jim's parents. On the other hand, I have several relatives I'd prefer have no access to my health records or ability to make decisions for my healthcare. It's kind of one of those laws that seems good or bad depending on the side you are on. Jim's parents don't want us telling them what to do so to them HIPAA is great. When I get older I might think it is great too.

  3. Excellent. Husband has a mentally ill daughter that plays mom and dad against each other by giving one access to info and not the other. Makes me want to scream.

  4. I'm glad I don't have this kind of bureaucratic nightmare here in the UK. It's hard enough without that :( Hang on in there - I hope things will improve for you and your family member soon.

  5. As a nurse i agree. HIPPA does what it is intended to do but i see situations everyday that make me cringe. I can't tell the non custodial father that his newborn is HIV positive. I can't even warn him to be tested. I can't do anything to help a grown woman who has severe mental retardation and a elderly mother who has made no legal or guardian plans for her daugjters future. I can't tell a grandmother who has been caring for her daughters kids while she was in jail anything about their current medical conditions or even of their vaccines are up to date.
    I can't imagine dealing with it from the patient/ family perspective. I think hippa needs to be looked at protect those who due to mental illness from themself.

  6. Beautifully done. The absolutes of the law are frustrating.

  7. Yeah. It was a nice idea. A nice idea gone completely off the rails.

  8. Yep, I can't even pay bills because of HIPPA..if I disagree or call the insurance company to confirm, can't for husband...Oh sure just have your husband call...umm what if he is the one mentally unstable and giving him the bill of $1500 that insurance denied, and now you need to argue that the insurance should cover the bill in order for him to get the help he needs would send him off the rails...into self harm. Yea, HIPPA is great, but it also is a struggle for those of us who have mentally unstable family members. I am legally financially responsible, but I can't call the insurance company or the doctor to discuss the bill? WTF?


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