Bioethics Forum Essay

When HIPAA Hurts

Ever since HIPAA went into effect and I’ve been signing that form over and over at my doctors’ offices, attesting to my knowledge of the law, I’ve been feeling I should turn the tables and make my doctors and their staffs sign some form assuring me they know the limits of that law. The latest sad news from Virginia Tech is only increasing that feeling. According to the New York Times, “Because university officials misunderstood federal privacy laws as forbidding any exchange of a student’s mental health information … they missed numerous indications of the gunman’s mental health problems.”

Some more scenes from the land of well-intentioned over-regulation of medical records:

A woman who is the legal guardian of a child with a disorder of sex development asks me to help her get a second and maybe third opinion about the child’s medical options. The child has been brought from Africa for possible treatment. The legal guardian is a retired registered nurse and a careful and loving caregiver. I suggest she get a complete copy of the child’s records so she can easily consult with whomever she wants. The doctors’ offices that have the records tell her she can’t have copies because she isn’t the child’s parents. The doctors are willing to let her consent to surgery on the child’s genitals, but they won’t give her copies of the child’s lab results.

The woman does eventually (through direct, personal appeal to a sympathetic staff member) get copies of the records. She gives a copy to me so I can help her understand the material and obtain more professional opinions. (I’m a patient advocate for people with disorders of sex development, so I know all the teams who work on this.) One of the medical care professionals I call for help freaks out and says the legal guardian should never have given me a copy because I’m not a medical professional so I’m not allowed to look at the medical records.

A colleague who teaches undergraduates notices a student in one of his classes is beginning to act very strangely. The student seems to be expressing paranoid delusions and has stopped bathing. The colleague spends the next several months trying to figure out who is legally allowed to say what to whom as he tries to get this student to someone who might be able to figure out whether he’s developing schizophrenia or some other serious mental health problem. Occasionally he loses track of the obviously endangered student as he navigates the maze of privacy rules in the university system.

I sometimes try to help people recover their medical histories. Some I help were told out and out lies about what happened to them. Their medical caregivers were too ashamed or too paternalistic to tell them the truth. Some were too overwhelmed at the time of a medical crisis to make total sense then of what happened. If I can help people get copies of their old medical records, I can often help them understand (and heal from) what happened to them. But it is getting harder and harder to get those medical records as hospitals and clinicsthrow them out by the dumpster-full. One reason for the purge is cost, another space. But when I press keepers of medical records, they also tell me that HIPAA has accelerated the destruction. If you don’t keep the records, they say, someone can’t accidentally break the law by giving records to the wrong person.

I’m sure the lawyers who wrote HIPAA and similar laws were just trying to protect people. I’m also increasingly sure that M.D.’s are going to need J.D.’s to feel safe enough to provide the care they wish they could.

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