Informed Consent and The H Word: An Interview with Rick Schweikert
Posted on Friday, September 4th, 2009
We take the concept of informed consent very seriously in our practice. Each client has the right and need to know what kind of treatment Dr. Verigin recommends and why, how it may affect them (benefits and risks) and other options at their disposal, including the option of pursuing no treatment at all. Consent alone is not enough, and this is why Dr. Verigin spends so much time teaching and counseling his clients: to ensure that any consent given is truly informed.
For too often we have seen how much damage can be done in the name of dentistry when consent is largely informed in name only. The most glaring examples, of course, involve mercury amalgam fillings. When pro-amalgam dentists recommend them, they seldom call them what they are. Rather, they call them “silver” fillings or “amalgams,” despite the fact that they’re made of more than 50% elemental mercury. Neither do they tell patients of the risks. If asked, they will typically say that there are none – a blatant lie rooted not in deceit or malice but misinformation or ignorance. In such cases, no person consenting to these fillings can be said to have given informed consent. And those times when risks become reality and these toxic fillings poison the body, contributing to systemic, chronic illness and dysfunction, practices like ours become a source for education and treatment, to help undo the damage so people can detoxify and heal.
Informed consent is a legal condition whereby a person can be said to have given consent based upon a clear appreciation and understanding of the facts, implications and future consequences of an action. In order to give informed consent, the individual concerned must have adequate reasoning faculties and be in possession of all relevant facts at the time consent is given.
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In cases where an individual is provided insufficient information to form a reasoned decision, serious ethical issues arise.
A recent book we recommend brings such “serious ethical issues” to the fore.
The H Word by Hysterectomy Educational Resources and Services Foundation (HERS) founder Nora W. Coffey and Pittsburgh writer Rick Schweikert chronicles a year spent in bringing attention to the physical, mental and spiritual damage hysterectomy causes – much of which, contend the authors, could be prevented if consent were truly informed. For the truth is, hysterectomy is almost never medically necessary and almost always detracts from a woman’s health – facts that many gynecologists and other physicians don’t know or disregard, just as in the case of conventional dentists with respect to mercury.
In alternating chapters, the authors recount a year of demonstrations coordinated by the independent, nonprofit HERS Foundation in which women and men distributed educational material about hysterectomy outside of hospitals in each state in the nation. Also, in each state, productions of Schweikert’s powerful play un becoming were staged to further educate people about the true nature of this all too common medical procedure. In some locations, the activists were met with outright hostility and even aggression from doctors, nurses and hospital administrators. In all places, women and men alike expressed gratitude for the educational material and knowing that they or their wives were not alone, that their post-hysterectomy illnesses were not “all in their heads” but real and predictable outcomes of the procedure.
Recently, our dental team member Lisa spoke with co-author Schweikert via email to learn more about the reality of hysterectomy, its impact on the lives of women and the men in their lives and the importance of informed consent.
Rick Schweikert, Co-Author of The H Word
Lisa: Before reading The H Word, I had this idea that hysterectomy (removal of the womb) and oophorectomy (removal of the ovaries, or female castration) [H/O] were things that were common in the past, rarer – though still performed – now. And judging from the reactions of others with whom I’ve discussed the book, this seems a common misconception. Why do you think people remain so unaware, especially when health and health care issues are so prominent in the media and public discourse? For instance, with respect to women’s health, Abramson critiques HRT (hormone replacement therapy) at length in his Overdosed America but says nothing about hysterectomy. Why do you think the H/O issue is all but ignored?
Rick Schweikert: As we demonstrate in Chapter 5 of our book, hysterectomy and female castration experimentation are nothing new – including, as Mary Daly notes in GYN/ECOLOGY, its fairly widespread use to “elevate the moral sense of the patients, making them tractable, orderly, industrious, and cleanly.” In 1914, the Mayo Clinic began recommending hysterectomy for such benign and otherwise treatable conditions such as the repair of cystocele, i.e., a prolapsed or sagging bladder. The subsequent 60 years have seen a monopolizing of “women’s health” by gynecology, which is a surgical specialty. The surgery of choice (often referred to as “the goldmine of gynecology”) is hysterectomy, with about 75% of hysterectomized women also being castrated at the time of surgery.
The numbers of “reported” hysterectomies performed in the U.S. spiked in the 1970s. A Congressional hearing on unnecessary surgery in 1976 found that hysterectomies for cancer prevention or sterilization were unjustified. The second Congressional hearing in 1993 concluded that “90 percent are performed more out of folklore and tradition than proven effectiveness.”
The media attention following these hearings led many to believe that the problem of hysterectomy had been dealt with, but nothing was done to stop doctors from performing medically unwarranted hysterectomies. Hysterectomy consent forms were created, but they don’t arm women with the information they need to provide informed consent. They’re merely a way to document the woman signature, to protect doctors and hospitals from lawsuits.
Today. the Food and Drug Administration, the American Medical Association and the American College of Obstetricians and Gynecologists are all run by doctors. Gynecologists are all but immune from criminal or civil recourse. There’s no governing body for gynecologists that doesn’t have an inherent conflict of interest.
The rate of “reported” hysterectomies has remained at about one out of every three women by the age of 60. We say “reported” because doctors and hospitals aren’t required to report hysterectomies performed in federally-funded hospitals (e.g., on Indian reservations and military hospitals, where hysterectomy rates are very high), hysterectomies performed abroad (medical tourism) and outpatient hysterectomies. The number of unreported hysterectomies is unknown, but outpatient hysterectomies and the proliferation of robotic hysterectomy are estimated to increase the number of total hysterectomies performed in the U.S. to levels exceeding those that preceded the hysterectomy rate prior to the Congressional hearings.
If you were to begin asking your friends and family if they know anyone who’s had the surgery, you’d find that many women are reluctant to talk about it. But as our book makes very clear, you’ll find no corner of this country that hasn’t been altered by hysterectomy. This is especially true for women of color and in the South, where hysterectomy is often referred to as “the Mississippi appendectomy.”
The media has written extensively on the subject and there have been many books, such as Dr. Robert Mendelsohn’s MALePRACTICE, so it’s difficult to say why so many people are unaware of this ongoing iatrogenic epidemic.
L: What is the main problem with H/O? Is it a matter that the procedures are physically harmful or that they are done too often, or both?
RS: Clearly, it’s both. If the number of medically unwarranted hysterectomies performed was only 25%, it would be alarming. Whatever number you choose – Congress’ estimate that 90% are medically unwarranted or the HERS Foundation’s estimate of 98% – the number is staggering beyond belief.
There is no question in most people’s minds that removal of the male sex organs is damaging, but rather than list the ways that removal of the female sex organs is damaging, it would be best to direct your blog visitors to the HERS Foundation website where they can watch the Female Anatomy Video or see the Adverse Effects Data to learn the problems women report after hysterectomy.
L: What are some of the main (or most common) ways in which h/o affect women’s health and wellbeing? And as The H Word makes clear, it’s not just women who are affected. How are men affected? Families?
RS: It took an entire book to answer this question fully, but hysterectomy is the surgical removal of the uterus: a reproductive, sexual, hormone-responsive organ that supports the bladder and bowel, and provides structural support throughout the pelvis and even to the spine. For example, the uterosacral ligament (attached to the uterus and the sacrum in the lower back) must be severed to remove the uterus, which is why a vast majority of hysterectomized women report severe back pain following the surgery.
Whether the surgery is performed abdominally, vaginally, laparoscopically or by a gynecologist-controlled robot, a hormone responsive sex organ is removed, and if the cervix is also removed, the vagina is shortened and sewn into a closed pocket. Blood and nerve supply travel through the pelvis along with ligaments that must be severed. That blood and nerve supply radiates out from the pelvis to the extremities, which is why women experience tingling in their hands and feet, a profound loss of sexual feeling, femoral neuropathy (which is sometimes permanently crippling) and a host of other irreversible lifelong problems.
Women who experienced uterine orgasm before the surgery will not experience it after the uterus is removed. Osteoporosis and cancer are more common in hysterecomized women, and hysterectomized women have a three times greater incidence of cardiovascular disease than women with an intact uterus. When the ovaries are removed, women have a seven times greater incidence of cardiovascular disease.
And how are the partners of hysterectomized women and their families affected? When you consider that nearly 80% of hysterectomized women report “personality change,” it’s not surprising that confidentially most women say all of their relationships are altered after the surgery. Diminished or absent sexual desire is reported by about 75%. 68% report difficulty socializing; 49%, being unable to maintain previous level of employment; and 40%, loss of maternal feeling.
The daughter of pioneer movie-maker Louis B. Mayer has written of her mother’s hysterectomy and how it splintered their family’s life. “The operation was routine,” she wrote, “but nothing was ever the same. Overall, it was the worst calamity that ever hit our family.” Her mother’s illnesses after the surgery, she remembered, “were like an ominous cloud over my life for the rest of her years.”
L: What are the typical justifications for H/O? Why are these procedures deemed medically necessary? My sense from reading the book is that most conditions can be treated differently or are self-resolving, needing no treatment at all. What are the 2% of cases in which H/O might be medically necessary? What alternate treatments (including the option of no treatment at all) exist for the remaining 98% of cases?
RS: Most typically, hysterectomy is recommended for heavy bleeding, which is often caused by submucosal fibroids. No woman ever needs a hysterectomy for fibroids. Most women never know they have them, and they tend to shrink and calcify at menopause. If a woman who is fully informed of the problem and the treatment options decides she wants the fibroids removed, myomectomy is still a major surgery, but in the hands of a skilled surgeon it will remove the fibroids, leaving the female organs intact.
The growing age group for hysterectomy is young women who are often told they have endometriosis, but for the women who contact HERS, endometriosis is misdiagnosed nine out of ten times.
All too often, women tell us their doctor recommended hysterectomy simply because they had no plans for having (more) children, and many women don’t recall why the surgery was done at all.
Every woman is unique, and no one problem can be treated with a broad brush. We discuss many alternatives to the most common justifications for hysterectomy in the book. Hysterectomy is never “needed,” because that would assume that the woman has no choice in the matter. But even if a woman has cancer, it’s her choice whether she treats it or not. For example, if the cancer has spread beyond the uterus or ovaries, removing those organs may not prolong the woman’s life.
Many hysterectomies result from obstetricians pulling and pushing babies out of women. “Spontaneous deliveries,” as they’re now referred to, are time-consuming for doctors. Women don’t need doctors to have babies, but once a doctor gets involved, time is money. Have you ever heard of a baby that didn’t come out? It does happen, but only in very rare instances, such as when the placenta happens to block its own exit by attaching to the cervix (placenta previa), making a C-section lifesaving for both the baby and the mother. And when the placenta doesn’t detach from the uterine wall (placenta accreta), sometimes a hysterectomy is the only way of saving the mother’s life. But placenta previa can often be managed conservatively and occurs in only 1 in 200 pregnancies. Placenta accreta occurs in only 1 in 2,500 pregnancies. By any measure, the surgery is rarely lifesaving.
L: A complicating issue you deal with at length in the book involves the matter of informed consent. While women who undergo hysterectomies may well have signed an “informed consent” form, you say that this consent is not always truly informed. As a result, you say the surgery becomes a form of assault, a criminal act. I was captivated by that stark description, and I was wondering if you could elaborate on it some.
RS: Consent to surgery is more than a piece of paper with a woman’s signature. At minimum it requires full disclosure of the diagnosis, prognosis, options in treatment (including no treatment at all), and the consequences of those options. The minimum information every woman requires before being asked to sign a hysterectomy consent form is available for free in the 12 minute video on the HERS website. No woman can be said to have provided consent without it.
But it’s not we who determined that unconsented hysterectomy falls under the rubric of assault. It’s the law. Legally, unwanted touching, whether it’s rape or unconsented surgery, is considered battery.
Each year there are almost five times more women needlessly hysterectomized and castrated in this country than report being raped. Rape is a criminal offense, while the unconsented removal of the female organs isn’t a punishable crime.
L: How can surgeons get away with performing procedures like H/O even when women directly say they do not want it – as in so many of the cases described in your book?
RS: Many women expressly state that they don’t want the surgery, and they even write this into their consent forms prior to exploratory surgery. But once you’re in the hospital, doctors have time and again prevailed in the courts because of what is called the “reasonable physician standard.” Most “reasonable” gynecologists perform hysterectomies for benign conditions. So, although women do not consent to the surgery, the reasonable physician standard has protected doctors who do what other “reasonable” physicians might do in the operating room…regardless of the woman’s wishes.
L: Why don’t physicians do more to educate their patients, to ensure fully informed consent?
RS: This is the million dollar question that each gynecologist needs to be asked.
Why didn’t doctors inform the public that lobotomy did more harm than good? Why are so many unnecessary c-sections performed? Why isn’t the public informed of the dangers of in vitro fertilization?
There are many answers to why doctors perform unwarranted hysterectomies. Some say it’s sexism; some say it’s money; some say it’s power. Maybe in some instances it’s all of those. But mostly doctors perform the surgery because they can get away with it.
The male organs are visible, and no man will believe you if you tell him that sex will be the same after removing his organs, or that he won’t be damaged by their removal. But the uterus and ovaries aren’t visible, and their functions are a mystery to most people.
Most women don’t understand that the uterine contractions they experience during labor are produced by the same muscles that create the pleasurable contractions during uterine orgasm. There’s no way to identify where the sensation of orgasm emanates from – until the uterus is removed.
If you don’t know that one of the ligaments that must be severed to remove the uterus also provides support to the lower back, then how are you to know you’re likely to have back problems after the uterus is removed?
It’s about power first, which includes the money that doctors are handsomely rewarded for removing uteri. But another question comes to mind: why is it that we trust doctors more than we trust car salesmen or politicians? I certainly understand the desire to trust doctors, but it’s not necessarily a good place for trust. It’s far better to inform the public as much as possible, such as this book does, so women can make the best choice for themselves and be in control of the decision making process.
L: Considering the arrogance and dismissiveness of many in the medical profession, as chronicled in your book and elsewhere, how can women prepare themselves to be their own advocates?
RS: The only solution is to change the law. Doctors must be stopped from performing unconsented hysterectomies, and the only way to do it is to require them to provide consent, based on centuries of documentation and anatomical fact.
In the meantime, that’s why we wrote The H Word. The subtitle is “The diagnostic studies to evaluate symptoms, alternatives in treatment, and coping with the aftereffects of hysterectomy,” but it’s about lot more than that. It’s the most complete source for the information required for informed consent, as told through the stories of talking with women in every corner of this country. Proceeds from the book benefit the HERS Foundation.
Education is the key, and education about the many lifelong functions of the female organs should be taught to every girl and woman.