Why Privacy Laws Matter

As a caregiver, I've been frustrated by HIPAA and other privacy policies that kept me in the dark when my loved ones were in crisis. It seemed ridiculous for physicians, hospitals, and treatment centers to deny me information I needed to provide support when I was responsible for so many aspects of my loved ones’ lives. It has been especially excruciating when my loved ones' safety seems to be at stake.

Mental health confidentiality laws are important

But when I consider privacy laws from my loved ones' point of view, I see things a little differently. I can't think of a single member of my neurodiverse extended family who would want want someone else to make decisions affecting them, no matter how experienced, educated, or well-meaning that person might be.

And that includes me: despite the problems caused by my undiagnosed mental health conditions in my late teens and 20s, losing my autonomy or independence would have been worse.

But they can also be frustrating

Still, during my daughter's onset I would have gladly broken the law to get information and a say in her treatment. Because she was over 18, I was entitled to neither.

It's only in hindsight that I understand that the control I so desperately longed for might well have made things worse.

I couldn't force her to go inpatient

For instance, I tried to strong-arm my daughter Sally into checking into an inpatient dual-diagnosis treatment center recommended by her team, but she refused. I now understand that it would have been pointless.

For one thing, Sally was still in psychosis and would not have benefited from the program, and for another, she might have left and been in psychosis in an unfamiliar city.

But maybe most damaging was that my actions suggested that I valued Sally’s clinicians' viewpoint over her own, which diminished her trust in me and added conflict to our relationship.

She is in charge of her mental health

I'm not saying Sally made perfect decisions during the onset of her schizoaffective disorder. But I have learned that she is most likely to thrive when she is the leading voice in her treatment plan.

This requires people with useful knowledge to not only follow the law, but also take the time to answer her questions, explain her options, and be completely honest about what she can expect and psychiatry's margin of error. (This last is important because so much is still unknown about the brain and why and how some medications and treatments work. It is incredibly patronizing – to the point of malpractice, in my opinion – to withhold that kind of information from clients and peers.)

Frustrated by privacy and confidentiality laws?

Here's a thought experiment I found helpful when I was frustrated by the privacy laws around my daughter’s treatment. Try to remember what it felt like when parents and others were trying to control your life at their age.

When I was a young adult and people suggested that I was too immature to make good decisions, I felt infuriated and betrayed. When I had a pregnancy scare during my freshman year at college, I was able to get help from campus health providers, knowing they were bound by confidentiality laws. If clinicians or administrators had contacted my parents, I would have considered it a profound assault on my privacy by everyone concerned. And it would have made it harder for me to trust them afterwards.

I like this analogy because everyone involved would have preferred a different outcome, even though objectively there was no "right" one. This mirrors many of my experiences during my loved ones' mental health crises.

When healthcare professionals are making the decisions

This is the most critical reason to protect our loved ones' privacy: when anyone other than the client – doctors, social workers, family, etc. – makes decisions about their care, we can expect worse outcomes in terms of their health and happiness.

Just as no one but me could assess the impact of a pregnancy on my life at 18, no one but our loved ones truly understand how the myriad factors around their conditions affect their lives and futures.

When the people with useful knowledge are physicians and psychiatrists, there is a real danger of hierarchy and power imbalance being used to compel compliance with a course of treatment. Sometimes, as when people experiencing psychosis are admitted to the ER, decisions must be made and conveyed without consent.

Respecting autonomy and dignity in mental health care

But when the client is in no danger of harming themself or others, no action should be taken without giving them as much agency and dignity as possible, and that includes not sharing private information.

Privacy laws can be frustrating, but prioritizing our loved ones' voices leads to better outcomes. We caregivers put our love into action every time we consciously respect autonomy and dignity.