Running Header: MISINFORMED CONSENT: THE POLTICS OF HYSTERECTOMIES IN THE UNITED STATES
Misinformed Consent: The Politics of Hysterectomies in the United States of America
By:
Carol Roselle
Health care, Economics and Politics
HHE 5135
John F. Kennedy University
Winter 2010
March 7, 2010
“Every 30 seconds, of every minute, of every hour, of every day a woman is being hysterectomized” Nora Coffey
Hysterectomies are performed on over 621,000 women a year and are the second most common procedure performed on women. Nora Coffey (2008) president and founder HERS (Hysterectomy Educational Resources) reports that there are more than “22 million hysterectomized women alive in America today” (p.5). According to the 2000-2004 Hysterectomy Fact Sheet: Women's Reproductive Health | CDC Reproductive Health. (2009) there was an estimated 3.1 million U.S. women who were hysterectomized in a three year span (p1, para2). Coffey’s (2008) extensive research in this area reveals that this procedure yields a 17 billion dollar profit each year however the hidden costs are immeasurable (p.13). Schweikert (2007) tells us that according to experts in the field most of these surgeries were and are not necessary and yet this surgical procedure remains one of the most “over-utilized and unwarranted surgery in the U.S” (p2, para3).
Experts in the field agree with Schweikert (2007) when he purports that women are not given all the information necessary to make an educated choice when it comes to this irreversible procedure. Though that may be disputed “there is little disagreement that 90% of all surgeries to remove the female sex organs are elective—which is to say that hysterectomy is perceived to be a woman’s choice” (p1, para1). However, after careful researching it seems as though there is very little choice. One would believe that these procedures are lifesaving, however the majority of these procedures are not necessary and in reality only 2% are life saving. (p1, para1). In an article “Hysterectomy: Everything You Should Know’ from .Estronaut a forum focused on women’s health tells us that it is unnecessary to have a hysterectomy for small fibroids, an abortion, cervictis, mild dysfunctional bleeding and pelvic congestion (p.1, para 2).
West (2002) tells us that Greeks coined the word hysta to define and explain “suffering caused by the uterus.” The idea that still pervades our society may have its roots in the concept that “just about any or psychological malady” can be blamed on a woman and her ability to conceive. “Hippocrates himself asked the question, “What is woman?” and answered it in one word: “Disease” (p.20).
Cloutier-Steele, L., & Wyatt, M. A. (2003) reveal the stories of some women’s experiences. Over and over it seems as though women are fighting to keep their reproductive organs intact. One woman tells her story in regards to finding out that her surgery was not necessary. Lise tells us the following about her experience:
I asked Nora Coffey, president of the Hysterectomy Educational Resources and Services (HERS) Foundation, to review my medical files. We concluded that my hysterectomy had indeed been unnecessary. Nora explained that, according to the pathology report, all my reproductive organs had been perfectly normal and healthy. (p.48)
Roberta tells us the following about her experience of trying to keep her reproductive organs. Even armed with knowledge of post affects of surgery the modality and mind set of the medical community treats woman’s body as if they are ticking bombs that can go off at any moment. Often as a modality and a collective Western Medicine holds on to the old myth that women are hysterical. The majority of the time, women are told the post castration effects and symptoms are just in their minds. Another prejudice that comes into play is if a women is in child bearing years, if they are single or married. Roberta tells us the following about her experience:
My information about post hysterectomy problems were brushed off. I was advised that with a myomectomy fibroids grow back. She told me that if I was to get married tomorrow, and my husband really wanted children, she would try to save my uterus. Otherwise it had to come out. She added that the cervix and the ovaries would need to be removed at the same time to prevent the possibility of developing cancer sometime in the future. (p.158)
Sadly, many physicians see the uterus only necessary for women wishing to have children. This often leaves women alone to explore potential alternatives to hysterectomy. Today, many insurance providers require a second opinion prior to approval of hysterectomy in an effort to reduce the number of unnecessary hysterectomies.
Schweikert (2007) tells us that seventeen billion dollars is a conservative estimate at a cost to health insurance (p. 2, para 3), and the factual number is difficult to factor since throughout a women’s lifetime there is an undetermined amount of lost wages and insurance costs for the 50% of the women who are no longer able to maintain their current employment (p2, para 1). There are intense adverse consequences of this surgery, ranging from thoughts of suicide, loss of short term memory, reduced maternal instincts, depression, physical pain etc. The HERS website indicates that after castration, 79.15% had personality changes, 79% experienced irritability, and 77.5% had a loss of energy. HERS reports the findings that that 54.1% experience suicidal thoughts, 39.1% loss of maternal feeling, 70.0%, loss of ability to socialize, and 69.6% loss of ability to interact with people, and a small amount of women 9.1% agoraphobia (Adverse Effects Data. (2009, February 23).
In light of such startling statistics, one would have to ask themselves why would women, knowing all the adverse affects move forward with a procedure that is not necessary and has such devastating effects on her and family. The answer is argued that they are not presented with all of the facts by their physicians, surgeons, hospitals or insurance companies. Coffey states that “Every 30 seconds, of every minute, of every hour, of every day a woman is being hysterectomized” and it is a fact according to information from an ongoing study that HERS reports that 99.7% of the women who were castrated did not have informed consent and the other percentage reported that they were “wrongly informed” what was going to happen to them after the surgery. Many are dismissed by their doctors after reporting various symptoms and were told it was all in their heads. (“Un Becoming” 2006 DVD Talk-Back Discussion)
There is a Hysterectomy Informed Consent form provided before the surgery however, it does not necessarily explain the procedure itself, the woman’s anatomy, the function of neither the reproductive organs nor any of the adverse effects of the procedure . In reality these women do not know what they are consenting to. The procedure is often performed against the woman and her family’s wishes as we see in a majority of cases. This is at the crux of the problem. The existing consent form is serving the doctors and hospitals as a legal document not as tool for the patient to attain the appropriate information. The consent form is often handed to the patient right before the surgery while on the gurney or on the operating room. There is a difference between consent and informed consent. A bill would change the consent form to include an educational video 48 hour prior to the surgery. There is a proposed revised Informed Consent Bill, House Bill No. 1366 on the table right now.
HERS (Hysterectomy Educational Resources) has a blog, which announced on January 20, 2010 that Indiana State Representative Bruce Borders has filed legislation for a “Hysterectomy Informed Consent”. HERS tells us that “This is a major step toward forging legislative change” [Web log message]. PRWeb mentioned in a press release on March, 3 2010 that there is a House Bill No. 1366 on the table right now. Borders recently proposed Hysterectomy Informed Consent legislation in light of going through this very experience after his wife was hysterectomized without informed consent :
Borders was motivated to introduce Hysterectomy Informed Consent legislation after his wife underwent a hysterectomy and removal of her ovaries without the information required for informed consent. Rep. Borders is determined to make sure that doctors will be required to provide every woman with HERS video “Female Anatomy: the Functions of the Female Organs”, at least 48 hours prior to being told to sign a Hysterectomy Consent Form so that every woman will have the information requisite to Hysterectomy Informed Consent. Nora Coffey, (2010, January 30.
This bill did not make it very far due to special interest groups and lobbyists. Kelly (2010) notes the following in the news article:
Tim Kennedy, lobbying on behalf of the Indiana Hospital Association, sympathized with the women’s experiences but said Indiana already has a state law requiring informed consent for all surgical procedures.(p.1, para 14)
Kelly reports that Kennedy goes on to say:
It specifically requires doctors to inform patients about the general nature of their condition; the proposed treatment or procedure; the expected outcome; and the material risks and reasonable alternatives to the procedure. And he told legislators there are penalties for doctors who don’t follow the informed consent law. These include discipline by the Indiana Medical Licensing Board and criminal charges of battery. He also said not getting informed consent is considered an act of malpractice in Indiana (p.1, para 15-17).
Though Kennedy may have some valid points it fades in the presence of the facts. Millions of women’s experience points to a different set of facts and are contradictory to Kennedy’s argument. For example, Kelly reports in her article about Tawanda Queen, of Maryland’s testimony, which indicates that the current consent law did not protect her. Queen testifies that she went in to have a fibroid removed at age 34 and noted the consent form revealed a hysterectomy was a possible viable route. Queen discussed this with her doctor and told the physician again that she didn’t want a hysterectomy. In her case the doctor made a notation on the form. However, during surgery, the doctors removed her uterus and one ovary. Queen reported that she has had physical pain ever since. “Every day I wish I had not survived the surgery,” she said (p.1, para 12-13). Queen is not alone as was mentioned in a previous portion of this paper that 54.1% experience suicidal thoughts and many of women have their ovaries taken without their permission. There are many malpractice lawsuits to support this.
All of this raises important questions about what is informed consent. Edwards, K. (2008) writes:
Informed consent is the process by which a fully informed patient can participate in choices about her health care. It originates from the legal and ethical right the patient has to direct what happens to her body and from the ethical duty of the physician to involve the patient in her health care (p1, para.2).
Edwards, K. (2008) raises other questions which are beyond the scope of this study, however other areas of exploration may be: What are the elements of full consent? How much information is considered “adequate”? What sorts of interventions require informed consent? When is it appropriate to question a patient’s ability to participate in the decision making? What about the patient whose decisions making capacity varies from day to day? Is there such a thing as presumed / implied consent? Edwards, K (2008) makes a very important point in the following statement;
In order for the patient's consent to be valid, he must be considered competent to make the decision at hand and his consent must be voluntary. It is easy for coercive situations to arise in medicine. Patients often feel powerless and vulnerable. To encourage voluntariness, the physician can make clear to the patient that he is participating in a decision, not merely signing a form (p1, para. 5).
During the course of this study and in regards to the hysterectomy informed consent legislation already law and the new proposal by Bruce Borders the details and access to information is sketchy at best. I was able to interview Nora Coffey on three different occasions. During one of the phone calls I inquired about why there was limited information on the Hysterectomy informed consent legislation on the web and in general. All Coffey, a well known and highly respected expert in the field of hysterectomies, could say was “that is all that is available” Coffey (personal communication, March, 3, 2010).
This lack of information seems to be a common thread that runs throughout much of this particular women’s issue. There may be a correlation of this “lack” of information and almost a societal unspoken agreement that this procedure is all right to perform and the answer may lay at the heart of the female anatomy itself. Interesting point that Schweikert (2007) makes is that it is because the organs are internal for one. Another point he makes is that their functions are not visible. The consequence of this is a 17 Billion per year costs to health insurance providers. Schweikert (2007) writes the following:
Consequently, what is often referred to as the most over-utilized and unwarranted surgery in the U.S. remains the most commonly performed non-obstetric surgery, at the cost to health insurance providers far exceeding $17B/year” (p.2, para 3).
Schweikert (2007) and Coffey hold that one of the most important changes to the already existing Informed Consent Bill would be that the woman watches a 12 minute video entitled “Female Anatomy: Functions of the Female Organs ” prior to the procedure. This video educates on the function of the reproductive organs and how they are interconnected with all the other systems in the body. It makes the female organs and their functions visible! This provides a vital role in the educational process of informed consent “which is necessary for women to understand the physical consequences of hysterectomy and oophorectomy” (p.2, para4) It is necessary for women to understand the physical consequences of hysterectomy (removal of the uterus) and oophorectomy (removal of the ovaries, the female gonads, which is castration. Cloutier- Steele (2003) declares that “without a thorough understanding of all the risks…associated with hysterectomy, a woman cannot give her informed consent to the operation” (p.22). The experts seem to agree that once women are educated then they may decide or not to move forward with the procedure, it is then that she is guided by her own knowledge and judgment.
What are the benefits of implementing the reformed informed consent bill? Schweikert (2007) believes, that there would be immense cost savings and believes that the nature of the hysterectomy is far reaching and is taxing our limited health care dollars. Schweikert writes:
The uterus is a hormone-responsive reproductive sex organ that provides structural support to the bladder and the bowel. The consequences of severing the ligaments, nerves, and blood supply attached to the uterus are profound and predictable. These quelae of problems that women experience after hysterectomy further tax our limited health care dollars. Physical damage, functional loss and endocrine abnormalities are inescapable and irrevocable consequences of hysterectomy (p1, para 5)
If women were informed it is logical to assume that the “need” for the operations would go down. This in turn would affect some areas of cost cutting in such areas as in the reduction of medical errors, the expense for law suits and malpractice suits, lowering of malpractice insurance premiums and it will reduce the need for high payouts for court cases. Malpractice can be as defined by Staunch (1996, 247) “any unjustified act or failure to act on the part of a doctor or other health care professional that results in the harm to the patient” (p276). According to Patel, K., & Rushefsky (2006), Nevada, Florida, Arizona, Illinois, Massachusetts, Mississippi, New York, Ohio are just some of the states hit hard by the increase of malpractice premiums. Gynecologists and obstetricians especially were affected. Survey conducted by the American College of Obstetricians and Gynecologists had to “retire, relocate or modify their services…In 2003 the median increased in malpractice premiums ranged from 26 to 73 percent” (p.274). One of the explanations for the increase according to Patel, K., & Rushefsky (2006), is “the increased cost of malpractice in ligation” and also “the increase in the size of jury awards in malpractice cases” (p 275). Couple this with all the women who did not have informed consent and also medical errors creates a huge expenditure.
Sybil Shainwald, a lawyer in New York, NY speaks about the complexity of even winning a case. She writes that it is very important to proceed with litigation, especially in childbearing years, referring to the article in the New York Times “Medicare Won't Pay for Medical Errors" Shainwald quotes:
The article continues, "…the real money, many health economists believe, may come from reorienting the payment system to encourage prevention and chronic disease management and to discourage unnecessary procedures." Now, Medicare won't even pay for doctors' and hospitals' errors, but will pay for unnecessary hysterectomies.
The rate of reimbursement for treatments for uterine fibroids in 2006 from Medicare and Medicaid were as follows:
1. total hysterectomy $5,200
2. vaginal hysterectomy, including removal of fallopian tubes and/or ovaries $5,140
3. abdominal myomectemy $5,132
4. vaginal hysterectomy $5,051
5. vaginal myomectemy $1,746 (pp 4. Para 1-3)
Other benefits would of course include the health of the woman and her family. It is difficult to put on a monetary price on peace of mind, being able to have children, being able to relate to others and one’s children. There is loss of employment, divorce, suicide, constant pain and pain management, HRT treatment, agoraphobia and many other debilitating consequences. How does one measure the effects and how they ripple out into our society?
There are some serious physical and medical conditions that are associated with the adverse effects of hysterectomies. Heart problems, breast cancer, mood disorders and the list goes on. Doheny (2005) addresses the myth about hysterectomies increases survival when in fact the procedure increases the risk of heart disease and tells us that studies indicate that 25 times more women suffer from heart disease then from ovarian cancer every year. The removal also increases risks of breast cancer and hip disease, osteoporosis. Doheny reports the following:
Keeping the ovaries is clearly best for women up to age 65 who are at average risk of getting ovarian cancer and get a hysterectomy for noncancerous conditions, said study author Dr. William Parker, a staff gynecologist at Santa Monica-UCLA Medical Center in Los Angeles. His finding appears in the August issue of Obstetrics & Gynecology.In his review of 20 years of published data from various sources, Parker and his team found that preserving the ovaries in this group of women reduces their risk for heart disease and hip fractures (p.1, para 2-3).
Where to go from here? People who are interested can support the bill by showing up to conventions, hearings, signing the petition, by telling and sharing their experiences; people can march and picket, call state legislators and educate others. We can follow the lead of some of the major players such as Nora Coffey, president and founder of HERS. Indiana State Representative Bruce Borders (Hysterectomy Informed Consent legislation). Borders, a Republican from Indiana, recently proposed Hysterectomy Informed Consent legislation. At the next big up and coming HERS convention he will present his talk, "Your Vote is Mightier than the Lobbyist's Dollar," which will address the legislative process and what conference speakers and attendees can do to enact meaningful legislation to counteract the more than 621,000 hysterectomies performed each year on women in the U.S. The information that is requisite to informed consent must be provided to every woman. PRWeb Press Release indicates that at the HERS convention there will be the keynote speaker Carolyn Maloney is the Member of Congress representing New York's 14th District in Manhattan & Queens and is Chair of the Joint Economic Committee. During a conversation with Coffey, she expressed her great hopes and gratitude for the involvement and backing by these two politicians. She said,” It has taken me 28 years to get the backing of just two politicians. This represents 28 years of work” Coffey (personal communication, February, 15, 2010).
Holistic health educators can play a huge role and have an ethical responsibility to learn about the evolution and trends of the hysterectomy in the U.S. One of the many roles of a Holistic Health Educator’s is to inform and provide information to others so they may live a healthier more integrated lifestyle and so they have choices. Women and all people ought to be aware about the adverse affects of this irreversible procedure so women may have informed consent by having all the facts and information. It boggles the mind that every day on average in the United States 1,643 women are being castrated.
Who should we Target? ALL women with a uterus are at risk. A decade ago, the most vulnerable were the women around the age 42, now the majority of women targeted by the medical industry are woman age 36.Coffey says it is not uncommon for young women, 17, 18, and 19 to call HERS looking for information about adverse affects of castration that have already had the procedure (“Un Becoming” 2006 DVD Talk-Back Discussion). Children, husbands, lovers, mothers, fathers, grandmothers, grandfathers, sisters, brothers, sons, daughters need to know this information. Educators, politicians, insurance companies, gynecologists, surgeons and hospitals need to be targeted. We need to reach those interested in saving money and health reform such as Medicaid and Medicare who are absorbing huge amounts of expenditures from this unwarranted procedure. During one of my conversations with Coffey, she states that the companies such as Intuitive Surgical Corporation and their off shoot Divnci Hysterectomy Company, who are responsible for 51% of the hysterectomies performed need to be held accountable. They are charging Medicaid 3xs the amount that they charge private insurers need to be targeted (Coffey, personal communication, February, 15, 2001).
The information needs to reach all small towns and target those to women and churches. For example whole towns in Mississippi and whole church congregations of women are no longer intact. The article, “Castration: The Goldmine of Gynecology” published by The Law Offices of Sybil Shainwald 57.1% of the women 65 and older in Mississippi have been hysterectomized. Hysterectomies are called “Mississippi appendectomies” (p2, para6).We need to educate those women in those towns and the doctors that are making this happen. Nora Coffey writes about her experience picketing protesting in Mississippi. Coffey (2006) tells us about her interaction with one woman from a town outside of Jackson. She told Coffey that “All the women in my church had one. And all the women in my town go to my church.” (p27) Whole towns of women are affected.
Reaching our young women and men and their parents is very important. This can be accomplished by way of literature, Facebook, and the other social Utility websites, forums, and online resources. Many people scouring the web for information on hysterectomies will not find much information on the after affects of the hysterectomy. Many want to find out the answers to questions such as "What are the consequences of a hysterectomy? What are the side-effects?”
The young women in high school whom are just learning and changing biologically and physically should be informed on this topic as well as other timely topics. Youth programs, books, music and plays. Un becoming is a play written by Rick Schweikert after meeting and being inspired by Nora W. Coffey and her work. “UN BECOMING explores how any woman can lose control when the voice of intuition is silenced”. Perhaps the HERS 12 minute female anatomy video about the woman’s should be presented in sex education classes in school or by way of independent lectures and workshops.
These young women should know the following Coffey (2006) writes:
While one in five women report being raped or sexually assaulted, one out of every three is hysterectomized without the information required to consent. 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 (p.123)
This may seem harsh however the silence that runs so deep must be broken. Paraphrasing Nora Coffey we must start calling it what it is, castration. There is no other word that describes this accurately. If it makes people cringe, then good. (Coffey personal communication, February 15, 2010). HERS 12 minute video is very informative, powerful and factual. This should be part of the curriculum and be shown in every school and I believe every gynecologist should have a copy of this video.
Reaching the gynecologists and medical community seems like a logical route. HERS has an ongoing website that contains a compiled list of all the gynecologists that have received her book, The H Word: The diagnostic studies to evaluate symptoms, alternatives in treatment, and coping with the aftereffects of hysterectomy. The bookmark that comes with the book reads “Give a Copy to a Gynecologist.” Perhaps there should be a public database of how many hysterectomies are done by which physician or office. Sources, including the internet and media and in the case of doctors and hospitals, are required to give accurate information according to the Informed Consent Law already in place but are instead widespread with misinformation. This is why the House Bill 1366 needs to get passed so women will get this educational video seen 48 hours prior the scheduled procedure. Perhaps those women in that little town Mississippi would all still be intact.
This paper has touched on possible means of reaching targets when they are already in the position of meeting the knife. As previously stated, the main reason for hysterectomy, the removal and oophorectomy procedures is for the “treatment” of benign fibroids and ovarian cysts, not cancer. Perhaps there can be a nutritional and life style intervention before it gets to the point where western medicine “needs” to operate and before a women feels that surgery is the primary “cure.” Preventative means may be sufficient to eliminate the need for the removal of the fibroids through nutritional and life style changes. If there was more education on preventative health care perhaps we would not be seeing so many women castrated because there will be no reason for them to see a doctor. Limiting visits to the gynecologists and staying away from the doctor’s office and hospitals may be an effective way to NOT meet the knife. Pain management programs and practices could be an alternative to a hysterectomy. Exploring alternatives to hysterectomies is a key to this dilemma. Women must understand when hysterectomy is elective and when it is necessary to save their life. One should carefully explore hysterectomy alternatives that may be available so an informed decision can be made about what is best for each woman. Women should second and third opinions. Many times, conditions for which your healthcare provider suggests hysterectomy are successfully treated with alternatives to hysterectomy that include less invasive surgeries, pharmacological treatments, and observation
Conclusion
On a side note it was during this investigation that my research led me to Nora Coffey again. I say again because I contacted her back in 1990 when I realized that I was suffering from severe depression with suicidal tendencies and could not figure out why. This call I was able to read her a letter that my physician sent me regarding the type of cancer I had, though I had cancer, Nora told me that it was not necessary to have removed my reproductive organs. I went on an investigation to track down my pathology reports and the hospital destroyed them . This procedure was done in 1980 and not much has changed. Every day women are needlessly being mutilated. I remember they did not say the word hysterectomy, I remember they said “they got everything,” I thought they meant the cancer. I was told that the sex would be unaffected, they lied. I had severe personality changes and depression every since.
The solution? The silence must be broken. In order to break the silence and ignorance, factual information must get into the hands of women and their families. Politicians and the government can longer ignore the huge financial burden on Medicaid and our health industry by conducting these often unnecessary procedures. As Coffey informs us over and over again, there is absolutely no reason for a hysterectomy to be considered legitimate “treatment” for fibroids, if your doctor tells you that, you have the wrong doctor. This pattern is unsustainable. The main issue orbits around the lack of information and lack of preventative health programs. This is detrimental particularly in regards to Informed Consent. The HERS Foundation has counseled over 800,000 women, who in light of the millions affected is a drop in the bucket and this club is growing by 1,600 plus women every day. However, of the women who were provided with the information contained in the HERS video, 98% did not proceed with hysterectomy. It seems as if there are only a couple of politicians that are really backing the House Bill 1366. It is the hope of many that with the passing of this bill, the general turmoil of the economics in this country, the spot light on health care, expenditures and reform will be enough to tip the scale. This issue runs deep and its nature is hidden like the organs being removed.
References
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Congresswoman Maloney To Be Keynote Speaker: Momentum Builds for Hysterectomy Informed Consent Legislation
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