Such questions come up often for the family caregivers of aging adults. Common situations include:
- An older parent who starts to act in ways that are strange or worrisome, such as becoming paranoid or delusional.
- An older adult who seems to be physically or mentally declining, but seems reluctant to discuss the situation
- A hospitalization or emergency room visit
- A hospitalized older person becoming confused (this would be delirium) and becoming no longer able to explain to family what the doctors have said
In these situations, family caregivers often find themselves grappling with issues related to the HIPAA (Health Insurance Portability and Accountability Act) Privacy Rule.
Why all the grappling?
Well, although most people — and all clinicians — have heard of HIPAA, its rules and requirements are often misunderstood. So for instance, families may assume they can’t report a relative’s worrisome behavior to the doctor, because their relative hasn’t given them permission to do so.
Even worse: doctors and other clinicians sometimes refuse to disclose any information to families, and will incorrectly claim that HIPAA doesn’t allow them to do so. This can create extra confusion and stress for families, or can even sometimes put an older person at risk for harm.
If you’ve been concerned about an aging parent’s health, or are otherwise helping someone with their health concerns, then it can be very helpful to understand HIPAA better.
In fact, the American Bar Association includes “Know your rights of access to health information” among its Ten Legal Tips for Caregivers.
The detailed ins and outs of HIPAA can indeed be hard to fully understand. But, it’s not too hard to learn some practical basics, especially since the US Department of Health and Human Services (HHS) provides a Summary of the Privacy Rule here, and maintains a truly useful set of online FAQs about HIPAA here.
In this article, I’ll explain five useful key basics to help you understand HIPAA better, especially when it comes to getting information as a family caregiver.
I’ll also address five questions I’ve often heard family caregivers ask about HIPAA.
At the end, I’ll share some of my favorite online HIPAA resources, as well as some final tips to keep in mind.