Over on Twitter, one of my pals, @namipolicywonk wrote: I'm a big proponent of civil rights, but whose rights are we protecting in a situation like this? http://thebronxchronicle.com/2016/04/03/op-ed-eliot-engel-side-families-seriously-mentally-ill-not-mental-health-industry/ …
Please do read the article, but in a few sentences, here's the synopsis. A mom is writing an oped piece about her daughter who lives in a group home in New York and has a chronic mental illness. The daughter went missing from her group home, off her medications, and reportedly because of HIPAA laws, the group home did not tell the parents the daughter was missing. In fact, they repeatedly said she was "not home," which in my book is dishonest. The story gets worse, the police initially wouldn't take a report, and eventually the daughter was located 28 days later in a shelter in a terribly deteriorated state. If that's not bad enough: the daughter was on Assisted Outpatient Treatment (the mom call's it Kendra's Law ) and known to be dangerous off her medications, so she was court-ordered to treatment, and the group home still didn't report this to the parent or the police for some prolonged period of time. The point of the article is a plug for Rep. Tim Murphy's Helping Families in Mental Health Crisis Act, now stalled in Congress, because the mom contends that if this law passed then the group home would have had to release information to her and they could have helped their daughter if they'd known she was missing.
If you've been paying attention here, you know that I'm not a fan of this segment of the proposed legislation that essentially says that a person with a psychiatric diagnosis can not refuse to allow his mental health professionals to communicate certain information (diagnosis, medications, follow-up appointments) to his caretakers. I've written before about my concerns, but I'll restate them: such a law singles out those with mental illnesses as the only people who can't decide not to share their medical information: it's stigmatizing, and it may lead people to avoid getting care because it will be translated as "psych patients don't have HIPAA rights." It's not that I'm any great fan of HIPAA, but HIPAA is misunderstood. It doesn't say who a doctor can't talk to without permission, it says who medical folks can talk to without permission (and there are plenty of entities that can get your medical information without your permission). Before HIPAA ~and yes, I'm old enough to remember this~ we didn't release information to family members without permission and patients had the right to confidentiality, this is not new. Furthermore, I think most of these catastrophes are about a misinterpretation of the bill or even laziness. 'I can't tell you if your family member is hospitalized on our unit because of HIPAA. ' But, dear unit clerk, you can go see if the chart has a release to talk to family, or you could go tell the patient his family is looking for him and ask if you can call them back. Finally, The no-HIPAA for psych patients legislation assumes that the sick person is sick and the family is well. What if a person with mental illness doesn't want their family involved because they hound him, because they've been abusive, or because a psychotic relative believes he's in danger from the KGB and is intrusive with his own delusional beliefs? What if family has previously discouraged treatment or medications and is critical of a person's decisions to get care? The bill assumes the caretaker will facilitate treatment and that may not be correct. That's why I don't like the HIPAA exclusion.
So back to the story, and let me start by saying I don't know the mom, the patient, the group home, or anyone else. So my first thought is: a potentially dangerous patient disappears from a group home and no one is notified? Is a group home even a health care facility? If you don't answer your phone and your parents call your building superintendent, they'll look in your apartment. Isn't there an emergency number listed with the group home--if so, disappearing off medications seems like an emergency and it would be okay to notify the emergency contact? The patient is court-ordered to treatment and off medications, can't the police be informed and told to bring the patient to an Emergency Room for evaluation as Kendra's Law allows for? And the police can certainly inform parents--they have no HIPAA issues. It seems that if the parents have been involved all along then someone at the group home would know them to communicate-- and it seems mom knew that the patient was off her medications and psychotic before she left, so she was likely in communication with her daughter. Is there more to this story --we only heard one side-- because it seems like there must be. Or is the group home misinterpreting the law to say they can't release information when really they could? Perhaps they've been negligent and are hoping the patient will return so their negligence won't be noticed and questioned? I don't know the case, but nothing I've read of HIPAA says that a living facility can't report a missing person to the police, notify an emergency contact when they go missing, or even just tell an involved family member that someone has left their facility. Is the facility afraid that a vulnerable, psychotic, person who is court-ordered to care is going to sue them for releasing information? Shouldn't they be more afraid that they'll be sued or sanctioned for a bad outcome? What about doing the right thing? Would it ever be the right thing to say a very sick person has gone missing and no one will be notified?
Lastly, let me say that I don't think the provisions of the Murphy Bill would have changed this. The changes in the bill allow for a mental health professional to release specific information to the caretaker. In this case, the patient is living in the facility-- they are the caretaker. I don't believe it covers an interested parent who is not the one responsible for getting the patient to appointments or helping the patient obtain medications.
We don't need to revise HIPAA just for mental health patients; though it would be nice if we got rid of it for everyone for many other reasons. We do need to talk with patients. When they are well, we need to ask them who we can share information with during an emergency. The issue isn't the legislation, it's how it is interpreted, and new legislation will be misinterpreted. We need to use common sense. Really, as health care providers, we need to do the right thing.