Maloney Supports Hysterectomy Study, Not Pre-Consent Video

In response to a story I wrote for womensenews, U.S. Rep. Carolyn Maloney, a Democrat from Manhattan, issued a statement today clarifying her position on a video consent requirement.

The story appeared first with a headline saying she would "mull" introducing a law, when she had said only--as the story read--that she would ask the General Accountability Office to look into the matter. The headline caused something of a stir because, as I wrote in my last blog, gruesome pre-consent videos are being used by anti-choice advocates to persuade women not to have abortions.

For that reason, some pro-choice women's groups are just reflexively rejecting the concept of a hysterectomy video.

The headline has now been corrected, and here, for the record, is the statement issued by Maloney's press aide:

Congresswoman Maloney is not contemplating introducing a bill and, in fact, in response to a question from an audience member during the forum, made clear that she is considering looking into if GAO can do a study, not legislation. Indeed, she doesn’t like the idea of Congress mandating that a particular video should be shown prior to any medical procedure. Nonetheless, in 1978 and 1993, Congressional hearings highlighted the issue of unnecessary hysterectomies, and Congress does have a role to play in investigating the reasons why so many women are being encouraged to undergo hysterectomies when less invasive alternatives are often available, particularly since they can have a negative impact on women’s health.

I think that pro-choice women's groups should stop and consider the damage done by hysterectomies and removal of ovaries before they take a position on the video.

One reason avoidable hysterectomies are still being done in the hundreds of thousands every year is because malpractice lawsuits are ineffective against them in all but the most egregious cases. It's a classic catch-22: because so many doctors do them, it's considered standard practice, and juries won't find against doctors when they plead that all they did was what so many other doctors do. So on we go. It seems to me that unless women somehow get the information they need about the health risks of these procedures, surgeons will continue to do these operations despite the evidence against them.

As Rep. Maloney rightly asked, "Where's the outrage?"

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.

The HERS Conference: Dr. Levine Delivers the Truth

The HERS conference last Saturday delivered a mountain of information in an atmosphere charged with sadness. Much of the audience was in tears listening to women tell about how they had become victims of doctors who continue to ignore the facts about avoidable hysterectomies.

In this first report on the conference, I'm focusing on Dr. Mitchell Levine, a remarkable, Boston-based gynecologist whom we would clone if we could. Here's my report:

Dr. Mitchell Levine, who teaches at the Tufts and Harvard Schools of Medicine, doesn't look much different from other tanned and fit 57-year old male doctors. But when he talks about women and their fate as victims of hysterectomy and removal of their ovaries, his tone because so respectful, even reverential, that it is unexpected, almost shocking.

"It's too sacred, it's too complex, to just take things out," he is saying as he sweeps a laser pointer over a full-color diagram of a woman's internal organs. But, he continues, taking a uterus out is so easy to do: "Clamp, clamp, clamp, clamp. Done." He demonstrates with four quick clenches of his hands.

Levine is speaking at the 28th conference of the HERS Foundation in a Manhattan hotel. He's telling the truth about the consequences of this surgery and why he believes that "at least" 90 percent of the 600,000 done each year could be avoided with other treatments, some as simple and cost-free as waiting.

It's a huge contrast to the paternalistic advice most women get: Your uterus is just a cradle. Done having children? Then you don't need it any more. But you'll still have the playpen! Wink. Wink.

And: You'll love life after your hysterectomy. No more periods!

And: If I end up taking out your ovaries, just think, no more risk of ovarian cancer!

"It's part of their training," Dr. Levine explains to me. "That these (the ovaries) are ticking time bombs. Instead, you end up shortening (a woman's) life because you've increased her risk of heart disease." Yes, that's right, a woman 40 to 44 whose ovaries are removed or which stop functioning as a result of a hysterectomy (that happens in better than one in 10 cases) faces twice the risk of heart disease as a woman with intact ovaries. This added risk more than outweighs the possibility of ovarian cancer, according to medical studies.

"Can you imagine if a man went to a doctor for a benign condition and the doctor said, 'I can fix that by cutting your nuts off?'" Levine asked with a laugh.

"He'd turn right around and walk away."

Indeed. Men would never voluntarily give up their virility, their joy in sex, to cure a non-life-threatening problem. They have no confusion about the fact that their organs are sex organs, not just baby-makers. Yet, women's organs have been labeled by the medical profession as "reproductive" instead of sexual, and the medical professions is more interested in us as baby factories than as sexual beings. So they talk us into castration for non-life-threatening fibroids and bleeding that can be managed in other ways. And we enjoy sex less as a result, some of us losing most if not all of our libido and some or most of our ability to feel sexual stimulation.

The situation has become more perilous for women as new surgical techniques make it possible to do hysterectomies on an outpatient basis.

Levine goes into detail about this. There's the traditional way, via a long abdominal incision; and then there are the newer ways, via the vagina or laparoscopically through small, abdominal incisions. For the small percentage of women who truly need their organs removed, these techniques are better, shortening recovery time from the surgery.

But regardless of how the surgery is done, there are the same consequences for women who could have avoided it. No matter how it's done, says Levine, removing the uterus "is still cutting the ligaments and the blood supply" to not just the uterus but to other organs as well.

As a result, 10 to 15 percent of women who have only their uterus removed lose the function of their ovaries anyway, apparently because of the loss of blood supply. This plunges them, whether they are 25 or 45, into an immediate and crushing menopause.

Furthermore, the ligaments that are cut are critical to the support of the bladder and bowel. When the uterus is removed, it leaves an empty space, and lacking their previous support, the other organs can sag and lean on each other. Urinary and bowel problems become much more likely.

The most common reason for hysterectomy is fibroids. But when Dr. Levine sees women with fibroids, hysterectomy is the last thing on his mind.

"For example, if a routine exam shows a fibroid, but the woman has no symptoms, I reassure her and say, 'See me in a year.'

"Or, if she's bleeding a lot but it's manageable, I just tell her to take some iron and wait" if she is near menopause. Estrogen, he explained, makes fibroids grow, and because estrogen levels drop at menopause, fibroids will then shrink.

If the bleeding is severe and menopause too far off, Dr. Levine may do surgery to remove them, leaving the uterus and ovaries intact.

Women at the conference asked what Dr. Levine would do if a woman had multiple fibroids--30 or even 50--or if some of them were very large. He answered that it didn't matter. He could still remove them, explaining that they are usually in a sort of capsule, like a hard boiled egg, and pop out when the capsule is cut.

But here's the kicker: Even though it takes longer to cut out fibroids and stitch the uterus back together than to do a hysterectomy--clamp, clamp, clamp, clamp--Dr. Levine gets paid less money to do the conserving surgery than to hollow out a woman's insides.

As U.S. Rep. Carolyn Maloney said at the conference, "Where is the outrage?"

Evidence Ignored by Doctors Removing Women's Ovaries

I have been deeply affected by the comments of women in response to my last blog about hysterectomy. Their lives have been devastated by--what should I call them? Ignorant? Arrogant? Unethical? Unprofessional? All of these?--doctors who continue to remove healthy ovaries from women in the face of evidence that they are causing irreparable harm to their patients.

Spurred by these comments, and by my need to prepare to attend the HERS Hysterectomy Conference this coming Saturday, I did some research and found a smoking gun right on the website of the American College of Obstetricians and Gynecologists. It's an August, 2005 article (scroll down the search page to the 7th article) that appeared in the journal Obstetrics & Gynecology. Apparently, it's not required reading for the practicing physicians who continue to castrate women.

Called "Ovarian Conservation at the Time of Hysterectomy for Benign Disease," it takes a comprehensive look at the risks and benefits of removing a woman's ovaries at the same time that she has a hysterectomy for non-cancerous problems like fibroids and heavy bleeding. As far as I can tell at this point, it appears to be one of the latest investigations of the issue, which, despite its importance to women, has not been the subject of much research at all.

Here are some of the conclusions:

• At no age is there any clear benefit to women from removal of the ovaries (oophorectomy).
  
• "For women younger than 65 at the time of surgery, oophorectomy increases the risk of dying from coronary heart disease."
• Evidence from the Nurses' Health Study says that the risk of heart attack was doubled if the women in question were between 40 and 44 years old; and up 40% if the women were older than 50.
• After losing their ovaries, women have higher bad cholesterol levels, higher blood pressure and more hardening of the arteries.
  
• Women who were past menopause when they had an oophorectomy ended up with 54% more bone fractures due to osteporosis than women with intact ovaries.
• The fractures often were of the hip, and having a hip fracture between ages 60 and 64 meant dying early--a loss of 11 years of life!
• It also means that many of those women could never leave their homes again on their own. One study found that before breaking a hip, 28 percent of the women were housebound; after the fracture, 46 percent were housebound.
  

So why do doctors continue to castrate women?

I certainly have no satisfactory answer to that.

But some, apparently, believe that the overriding benefit is to reduce a woman's chance of getting ovarian cancer. But this study notes that removal of the uterus alone lowers the risk of ovarian cancer by 40% below the level of women who retain their uterus.

So, let's see: since men have a risk of testicular cancer, should doctors be removing their testicles just in case? Or treating them with female hormones to reduce the risk of prostate cancer?

We women know that would never happen. Men prize their virility and do everything to keep it. Women prize their sexuality, too, but consent to hysterectomy and oopherectomy too often without realizing what they will be giving up. Thus the need for the HERS Foundation video and consent only after seeing it.

So, is it ignorance of the facts that keeps doctors castrating women? Or what? Theories--and certainly facts--welcome.

Tell the Truth About Hysterectomy!

Do women really get the whole truth about hysterectomy before consenting to this all-too common procedure? I know I didn't.

Nora Coffey, head of the HERS foundation, has been convinced for years that women do not realize that they will certainly lose some sexual feeling; will likely have problems with their bladders and bowels; that they may suffer back pain and see their waists enlarge as their internal organs and bones shift in place because where their uterus used to be is now an empty space. In the years since I underwent a hysterectomy in my mid-40s, I have suffered all of these symptoms, and my doctor never mentioned a single one. (It was a woman, by the way.)

On Friday, April 24, the foundation will hold its 28th Hysterectomy Conference at the Hilton New York Hotel in Manhattan to focus attention on an effort to require that women learn about all the possible consequences of hysterectomy before consenting to the procedure. The conference will feature an Indiana state legislator who is the first to introduce legislation requiring such disclosure.

And, the keynote address will be given by U.S. Congresswoman Carolyn Maloney of New York who will reportedly raise the issue of unnecessary hysterectomies in the House-Senate Joint Economic Committee, which she chairs. Experts estimate the cost of unnecessary hysterectomies at $17 billion a year.

I'll be covering the meeting for womensenews, a non-profit that specializes in news of particular interest to women.

But in this case, I certainly think that men would like to know about a medical procedure that will most definitely affect their sex lives along with their female partners!

The HERS foundation is advocating that women be required to view an 11-minute video it produced before consenting to hystserectomy. The video shows in a very matter-of-fact manner, using only color diagrams and voice-over-text, the story of female anatomy that somehow got left out of all our high school health classes.

"Women who watch that get it: they understand this is very serious surgery," says Coffey, who believes requiring the video is the only way to bring down the number of women who lose their uterus every year. As I've blogged about before, an astounding one out of every three American women have had surgery to remove their uterus by the time they are 60, and of those, 75% also lose their ovaries, the equivalent of male castration.

There is precedent for requiring the showing of videos: Utah, for example, requires women who are seeking an abortion to see one. Drug companies are required to put informative inserts into packages of medication, for example in birth control pills, thanks to the historic efforts of women's advocates including Barbara Seaman.

Losing your uterus is not like losing a tooth. Lose a tooth, and you can still chew with the others or get a false one to take its place. Each woman get's only one uterus, and it's so much an integral part of our bodies that you don't even realize you'll miss it until it's gone. And then, it's too late.

Use Your Elected Officials to Cut Through the Bureaucracy

Friends of mine recently told me they were having problems getting to talk to an actual person at Social Security and Medicare. Both programs have so many complicated aspects to them that you need an advanced degree to just figure out your choices. I really don't know how people with limited literacy manage at all.

In any event, I advised my friends to contact their member of Congress if the problems continued.

Sure enough, I got an email from them saying, "Thank you, thank you!"

I was gratified, but not surprised that the strategy had worked to equalize their relationship with the agency in question. Using your elected officials to get help with consumer problems that involve government programs and bureaucrats is almost a sure-fire way to move your problem to the top of the pile. Politicians rely on serving their constituents to build good will that will get them re-elected. At all levels, local to national, they employ staff members whose main job is to provide assistance to people who live in their district.

So, for example, at the state level you might be having trouble with an insurance company. Insurance companies are regulated by the states, so you should contact your state representatives. Maybe your local roads are in bad shape, or you see a really dangerous hazard. Just determine if it's a state, county or town road, and call the appropriate politician.

This works a lot better than contacting the bureaucrat at a highway department who will likely just throw your complaint into the pile. When such a person gets a call from a state elected official or a town council member, their attitude changes; suddenly your problem rises to the top.

But if you're not sure if your problem is related to the federal government, state, or some locality, don't let that stop you. Contact any of your elected politicians, and if the problem isn't in their jurisdiction, they'll refer you to the correct one.

Most of us constantly complain about how much we pay in taxes. Well, this is one sure-fire way to get some bang for your buck and equalize your power. Use your elected officials. Trust me, they're happy to hear from you.

Free To Buy Ineffective, Dangerous Supplements

As they did back in the 90s, the manufacturers of dietary supplements are revving up to protect their multi-billion dollar market from regulation, and they're getting help from liberals and libertarians who seem blind to how they are being manipulated.

It's sad. Clinging to the idea that government regulation is bad, bad, bad, champions of freedom are actually arguing that the public should continue to have the right to waste money on ineffective and possibly dangerous dietary supplements. In a response to my inquiry, the folks behind The Pen--who didn't bother to sign their names--actually equated Americans' right to privacy from government spying on our phone calls, etc., with the freedom to buy dietary supplements that have never been tested for effectiveness or safety.

Hello? Can't you tell when you're being used? Why should for-profit manufacturers be free to put anything on the market without first testing it for safety and effectiveness? Why should we trust these manufacturers any more than we trust auto manufacturers, or for that matter, drug manufacturers? Why do you trust them, you unnamed folks at The Pen? Because you believe, in the absence of any reliable reporting system, that no one died from using a supplement in 2008? (That is their primary argument.) Manufacturers right now aren't even required to register their existence, provide information on exactly what is in their products, or adhere to specific formulations for products so buyers can be sure about what's in those pills.

As I pointed out in my last blog, just because something is natural doesn't mean it's safe. Dr. Sidney Wolfe of the Health Research Group, offers the example of St. John's Wort. This plant, he says is pharmacologically active, just like a drug, and interacts with hundreds of other substances.

Under the 1994 legislation that unleashed the supplement industry from almost all regulation, the FDA has such weak authority that it has been able to ban only one supplement--ephedra--and instead has issued only warnings about comfrey and kava kava, both associated with liver toxicity, for example.

Sen. John McCain, ironically, is being vilified for proposing a bill that would only slightly improve regulation of supplements. This is all part of the right-wing effort to whip up opposition to someone who is not considered conservative enough. Read it yourself. You'll see there's nothing there to warrant the conclusion that anyone's trying to take away your vitamins.

Dr. Wolfe calls the proposal "a step forward" but adds that "80% of what's wrong with supplement regulation will still be wrong even if this bill passes."

What's wrong is that manufacturers, under this bill, would only have to prove the safety of new ingredients. All the ones already out there get "grandfathered" in. And, they need not prove effectiveness. As long as they don't make an actual claim of curing disease--which would then tip the product into the category of a drug--they can just imply it, saying things like "promotes prostate health" or "supports cardiovascular health."

So folks worried about their prostate or heart spend hundreds and thousands of dollars a year on these products, with no proof at all that they'll make any difference at all to their health.

We're babes in the woods when we approach the crowded shelves of supplements. We need help to figure out how to wisely spend our hard-earned money. Sure, the FDA has proven itself susceptible to political and corporate pressure. But let's focus on improving their performance instead of inflaming people with the false notion that someone is trying to take away their vitamins.

Shame on anyone who promotes that point of view.