Friday, September 23, 2011

Is HIPAA Hiding the Wrong Kind of Secrets?

August 16th, 2010 Anyone who has been to a doctor in the last dozen years has seen and signed the HIPAA (Health Insurance Portability & Accountability Act) form given out by their doctor or hospital. The HIPAA Privacy Rule was specifically designed to protect the privacy and integrity of personal health information collected by medical professionals about their patients.

Essentially this means that it is illegal to release the specifics of a patient case you may have either attended or witnessed. Thinking in terms of a laboring woman, what happens in her hospital room stays in her hospital room.

Doulas are not bound to HIPAA, but we do carry a professional code of ethics which makes it unprofessional to openly discuss our clients’ cases. Some of us may gather in small circles to privately work out our thoughts on situations we may have been in, and try to grow our knowledge base by sharing experiences. However, it is considered quite unprofessional to openly discuss any identifying details of a specific mother’s birth experience.

Of course, privacy is essential to trust. A woman cannot trust a provider who would willingly pass the details of her case around the internet for all the world to see. For the most part, it is nobody’s business what happens during her labor.

Well, unless it IS.

Speaking in generalities, because I will not discuss specific cases, I can tell you that some things I’ve witnessed as a doula in a labor room have been nothing short of a crime. Women have the right to informed consent and refusal, and I have seen cases where that right is violated over and over again throughout a labor. According to the American Medical Association,

“Informed consent is more than simply getting a patient to sign a written consent form. It is a process of communication between a patient and physician that results in the patient’s authorization or agreement to undergo a specific medical intervention…

…This communications process, or a variation thereof, is both an ethical obligation and a legal requirement spelled out in statutes and case law in all 50 states.”

So what happens when a woman flatly refuses to give consent, and a physician performs a procedure without her authorization and against her will? Katherine Prown, Ph.D. tells us,

“The legal doctrine of informed consent/refusal developed from the laws on battery. In a medical setting battery is defined as touching or treatment that occurs without obtaining proper informed consent; medical treatments that are substantially different from the ones a patient consented to; treatment that exceeds the scope of consent; or treatment provided by a physician other than the physician who obtained the patient’s consent. As case law on informed consent/refusal evolved, however, the courts increasingly defined lack of proper consent as a matter of negligence. Negligence requires that the lack of proper consent or failure to meet the standard of care resulted in emotional or physical harm worthy of monetary compensation. In certain circumstances in which monetary compensation is not an issue, though, the laws on battery may still apply.”

Given this, I have borne witness to cases where a woman’s rights are so flagrantly violated that it seems like an obscene injustice not to tell the world about what happened to her. But once the labor is over, the dozen or so people in that room simply move on to another labor, and because of privacy laws like HIPAA, nothing that happened is ever shared with the public.

You might be asking “Is it really that bad? Can it really, seriously be that bad?” You tell me. (**Trigger Warning**)

•I have seen a mother flat out refuse a procedure and/or treatment and the doctor say, verbatim, “You can say no, but we’re doing it anyway.” And they did. And nobody in the room could stop them.
•I’ve seen the mother’s parents get into yelling matches with the nurse or doctor because the medical staff constantly coerced or threatened the laboring woman to the point of emotional distress.
•I’ve seen a doctor stand over a woman and force her to “pre-authorize” a major intervention that was neither wanted, needed, or ever actually used during the labor, and refuse to leave the room until her signature was on the paper – giving her no time to contemplate the decision or discuss it with her family.
•I’ve seen a woman scream “No, stop!” while trying to kick a doctor’s hands out of her, as she tries climbing up the back of the bed to escape, while the doctor ignored her pleas and reaches farther into her vagina – blood curdling screams fill the room.
•I’ve had women cry and beg me to help them – to keep the doctor or nurse from doing whatever it is they’re doing to them – and I can’t help at all. Being a bodyguard is outside my professional scope of practice.
•I’ve seen a woman say she does not want an episiotomy, and the doctor say “Sorry” (snip, snip, snip) “I had to make some room.”
On one hand, I’m glad I was there to help those women in whatever way I could. On the other hand, it’s terribly stressful having witnessed crimes against women and know that professional secrecy will prevent everyone in that room from discussing what happened to her.

Of course the mother could take this information to the authorities, but that rarely ever happens. On one hand, as long as the mother came out with a healthy baby, nobody cares how she was treated in the process. She would need to have a damaged baby to have any sort of a legal case that an attorney would see worth his/her time. It’s also quite easy for a laboring woman not to remember or understand the details of what was being done to her. She’s in laborland – not taking minutes in a meeting. Women also have a hard time coming to terms with being violated.

This is the same reason so many women don’t report rape. After the incident is over, they just want it to be over. They don’t want to think about it, or drag it through a court system. They may think that it’s partially their fault, or that going public may put their story under embarassing and unfair scrutiny. When I took my VBAC story to the Chicago Tribune, my obstetrician accused women like me of having a “control issue.” No apology. No admission that his behavior was unethical and potentially illegal. He simply blamed me for not submitting to his violation. There are a million reasons women do not report violations, coupled with a million violators who continue to practice the way they do without anyone holding them accountable.

What can be done? At what point can we, who witness these crimes, open this can of worms and start talking about what is happening to individual women every single day in this system of ours? I know that it’s not my place to file complaint about the way a woman was treated, but if there’s no transparency, where does that leave us? I can tell you that it leaves me angry in my bones and feeling sick to my stomach.

In the mean time, I have to decide whether or not I can handle seeing any more of these hospital births, or if I should send women in to the lion’s den without someone like me there to help them in whatever small way I can. It’s a tough decision, and one that I may grapple with for a long time to come.


If you are a mother who was violated, did you report any of it? Was there a resolution? If you are a birth professional who has witnessed these births, how do you recover emotionally knowing there’s nothing you can do?

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