Monday, May 3, 2010

Video Consent Requirement May Be the Only Way to Stop Hysterectomy Epidemic

In this second report on the HERS conference, I want to focus on the push to require that women see an informative video before consenting to a hysterectomy.

The HERS Foundation has produced such a video and is hoping for legislative action. But even a proposal to require women to read more about the effects of the procedure before consenting, introduced this year by Indiana legislator, Bruce Borders, (seen here outside the conference room with keynote speaker, U.S. Rep. Carolyn Maloney) has prompted surprising opposition. Of course gynecologists objected, but so did the Indiana chapter of the American Civil Liberties Union.

The women who attended the conference were perplexed by this opposition. Many had told stories all day long of being victimized by doctors who not only failed to inform them about alternatives to losing their uteruses and ovaries, but lied about the benefits of the surgery. Why, the women wondered, would a civil liberties organization oppose an effort to truly empower women with enough information to make an informed decision?

After all, it's not as if it's news that too many women are losing their organs unnecessarily. This effort has been going on for decades. As I've pointed out in earlier blogs, the toll on women's sex lives and health is major, and for many, devastating. Women whose fibroids or bleeding or endometriosis could be treated without removing any of their organs get talked into a hysterectomy. Believing they have no other option, they consent to surgery to remove their uterus--which itself diminishes their sex lives and has other adverse effects--and often wake up to find that their doctor has gratuitously taken out their ovaries, too.

How can this be stopped? With about 600,000 women undergoing hysterectomies every year, what will it take to bring that number down significantly? After 28 years of counseling women, Nora Coffey, who founded HERS, believes required viewing of a video before consent may be the only way.

At the conference, Coffey said she had tried to have a conversation with a woman at the Indiana ACLU about her objections to the Indiana proposal, but had instead been on the receiving end of a loud scolding.

So, I decided to see if I could make sense of the objection, and found this explanation, written by VP, Legislation, Joan Laskowski, in the Spring, 2010 newsletter of the Indiana ACLU:

"Although civil liberty requires informed consent for medical procedures, this bill mandates ideologically inspired information that a woman must certify having read and understood, including risks, discomforts, irreversibility and resulting infertility...This simply parallels for conception the 'informed consent' requirements for abortion and compromises dignity and autonomy protected by reproductive liberty." (Bold face mine.)

Get it? What's disturbing the folks at the Indiana ACLU is the similarity of requiring women seeking abortions to view a video (or jump other hurdles) with efforts to prevent avoidable hysterectomies.

Laskowski, who did not return phone calls seeking comment, seems to be mistakenly assuming that the intent of hysterectomy information is to ensure that women stay fertile, to make sure they can still get pregnant. Note the word "conception" in her commentary.

This argument, of course, first of all ignores the reality that the only real concern most gynecologists have about cutting out a woman's organs is whether she still wants to have babies.

But the fundamental flaw in Laskowski's thinking is that she seems to have reflexively decided that because the form of these consent laws is the same for abortion and hysterectomy that both violate women's dignity and civil rights.

She fails to understand--or perhaps believe--that women are not fully informed by their doctors about the consequences of hysterectomy. This despite testimony at a hearing on the Indiana bill from women who said their doctors lead them to believe they had no choice but hysterectomy. They were coerced by misinformation, incomplete information, and fear-mongering--references to overblown risks of cancer.

It's also worth remembering that this is not the first time that women's health advocates have acted to intervene in the patient-doctor relationship on the grounds that women were not being told the whole story. In 1978, the U.S. Food and Drug Administration mandated that women be given informative information about birth control pills when they picked up prescriptions at the drug store. The FDA had tried years earlier to have doctors give women an informative handout, but the doctors had ignored the material or refused to hand it out.

In an ideal world, physicians' ethics would obligate them to provide women with complete information. But they haven't. The hysterectomy machine grinds on. Doctors and hospitals have financial incentives to keep it up--forever, unless there is a major intervention, yes, between them and their patients.

I teach ethics, with a focus on the media, but the principles for deciding if an action is ethical are the same regardless of the subject. Ethical dilemmas arise when all the means you have of dealing with a problem result in some kind of harm. In the case of the required showing of a video to a patient before consent, you are intruding on the doctor-patient relationship. You are turning an "I trust my doctor" simple decision into a more complex calculation that forces women to question their doctors.

On the other hand, there's the huge evil of avoidable hysterectomies. Since the goal is to protect women's health--not to force a woman to continue a pregnancy or to ensure she remains fertile-- you can ethically justify the intrusion of the video as less harmful than the surgery itself. The contents and tone of the video--or the text a woman must read--however, should be as inoffensive as possible.

This isn't the case with abortion consent laws. Abortion videos show gruesome pictures of actual abortions in what amounts to emotional blackmail. Oklahoma's new abortion consent law--stayed by the courts at the moment--requires women to undergo an ultrasound exam and hear a detailed description of the fetus before having an abortion.

The HERS video shows no gruesome pictures. Using drawings and a calm voice-over, the HERS video attempts to give a non-ideological picture of the functions of a woman's sex organs and their life-long importance to her health. A friend of mine who has spent decades working in the field of doctor and patient education finds some of the wording biased, so I'm sure it's possible to make it even more neutral.

If all women considering a hysterectomy had to view the video, tens of thousands every year might avoid losing their sex organs. Seems to me it's more than worth it to intrude on the doctor-patient relationship.

But if anyone has a better idea of how to stop the hysterectomy epidemic, please speak up. That includes you, Joan Laskowski.

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