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Lost in the Shadows of HIPAA

A person can be lost living on the street with a debilitating mental illness. They can refuse all help from a caring family, even if they are cognitively impaired and unable to rationally make such a decision. There’s very little the family can do to get them medical treatment.

HIPAA can lead the person not completely capable of making medical decisions for themselves to squander and suffer needlessly.

No one without information can intervene on their behalf.

For those of us dealing well with mental illness HIPAA can help us control our medical information and the story it tells about us.  No one needs to know about our challenges but the people we choose to share them with.

But many adults struggle with serious mental illness that could be treated if only they sought and adhered to the help doctors can give them. Some of these people are so sick that they are not rational. They are unable to make proper decisions for themselves.

Yet if they are not deemed incompetent by a court, their poor, dangerous decisions stand and no one can force them to enter a hospital or assertive outpatient treatment or take the meds they are prescribed.

As a matter of fact, because of strict privacy laws, no one can even find out their diagnosis or what treatment has been prescribed to help them if the person chooses to withhold this information.

Desperate families who do not want to undertake serious, lengthy, expensive, and life-wrecking legal action against their loved ones are left out of all treatment decisions. They cannot help.

They are excluded from their loved ones’ treatment in the name of privacy.

For those of us who are well enough, HIPAA serves us and even seems to be written for cognitively skilled well-treated people with an illness. It can be a nuisance, such as when the explanations of benefits sent to our house list all of my claims as protected since the insurance is provided through my wife’s company and the EOBs are mailed to her.

But aside from some frustrating calls to insurance companies who feel customer service is a terrible burden when I need to find out what doctor is billing for what service every time we get an EOB, HIPAA has mostly served me well.

But there were times when I was incoherent and in the hospital, suicidal and not making any sense, and my parents could do little to intervene and help me unless I signed a privacy release, which I never did.

Sure, they could have petitioned a judge to declare me a danger to myself and others, thus having me rendered legally incompetent and forcing all information to be released to a third party, enabling them to intervene and make decisions for me. But that would have destroyed my independence once I was well.

And it would have taken too long to do much good anyway.

Fortunately, I held it together enough to accept and adhere to treatment. I never ended up on the street, or in jail, and I didn’t have to sue to get my rights back.

It ended well for me, but for so many others the suffering is needless. It could be made better if someone could force treatment on them. But to advise on treatment the caring people who seek to intervene need information.

Here HIPAA can hurt.

Left with no answers to even simple questions, let alone the big hard ones, too many people who could do well for troubled family members are barred from helping in the name of privacy.

Sure, I know, allowing the sharing of information with family members who seek to intervene is a slippery slope. Too many privacy advocates can’t comprehend someone so mentally sick that they would withhold information and make choices that would make their own condition significantly worse. The privacy advocates fear that instead someone out there could use the medical information to the sick person’s detriment.

I think that would happen far, far less often than people would be helped and made well.

In most cases mental illness can be effectively treated if the patient chooses to follow a treatment plan. But if they choose not to, even if the mental illness prevents them from making rational decisions, they can never heal.

HIPAA, for all it’s good, condemns these people to a silence enforced by the law and their own limitations.

I don’t know what the answer is. I have no legal training and may be too close to the issue to reasonably be heard. But I do know that a disease that makes a person unable to make clear decisions is a dangerous thing.

And to let the person who is unable to make clear decisions make all the decisions about their care just doesn’t make sense.

Somehow, families of those with the most serious mental illnesses must be heard. But to be heard well, first they must know what’s going on.

We need to be aware that the very laws passed to help each individual keep their privacy can potentially harm them as well.

Lost in the Shadows of HIPAA

George Hofmann

After much of a life spent in and out of hospitals, jobs, and relationships, George has spent the last dozen years living successfully with bipolar disorder 1. He teaches meditation as an adjunct therapy for mental illness, and writes and speaks about the therapies of meditation, movement, and meaningful work. Visit George at or join the Facebook group Practicing Mental Illness

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APA Reference
Hofmann, G. (2019). Lost in the Shadows of HIPAA. Psych Central. Retrieved on February 19, 2020, from


Last updated: 22 Mar 2019
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