In a ‘culture’ of hysterectomy, is informed consent enough?

This graphic depicts the rise and fall of hysterectomies performed annually. Image courtesy of the American College of Obstetricians and Gynecologists, 2013.

This graphic depicts the rise and fall of in-patient hysterectomies performed annually between 1998 and 2010. There were over 400,000 surgeries done in 2010. Image courtesy of the American College of Obstetricians and Gynecologists, 2013.

By Meghan Eldridge 

COLUMBIA, Mo. — The uterus, at once remarkably powerful and quietly hidden deep within a woman’s body, not only serves as a dwelling for a baby from conception to birth, but also plays a role in maintaining women’s overall health. The most controversial piece of real estate in the female body, it’s been a point of contention in the United States for decades.

Latin for “womb,” the uterus weighs about six ounces and is one of the organs that makes a woman distinctly female — yet one in three women will have hers removed by the time she’s 60 years old.

Hysterectomy, the removal of the uterus, is the second most common major surgical procedure for women, surpassed only by Cesarean section during childbirth. The rate of hysterectomy in the United States is the highest among industrialized countries. By comparison, fewer than one in seven women undergo the procedure in Italy each year.

A study by the American College of Obstetricians and Gynecologists published in 2013 found that 433,621 in-patient hysterectomies were performed in 2010.

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Fourteen years ago as many as 70 percent of hysterectomies were done for inappropriate medical reasons, according to another study by the American College of Obstetricians and Gynecologists. That percentage may be increasing as the number of alternative treatments improves while patients continue to undergo the surgery. The process of ensuring that a patient has all the information she needs to make an informed decision remains vitally important and sometimes challenging.

Kellie Wallace, a 50-year-old mother of four living in Columbia, doesn’t think she received enough information from her gynecologist before she made the choice to have her uterus removed. Her case highlights the challenges of ensuring informed consent is part of every woman’s hysterectomy experience.

One patient’s perspective

Wallace felt a lump below her belly button while lying on her back in bed one evening in early 2012.

Kellie Wallace (center) traveled with her family to Disney World for a summer trip at the height of her symptoms and heavy bleeding. She instructed her four children to let her know if they saw blood on her clothes.

Kellie Wallace (center) traveled with her family to Disney World for a summer trip at the height of her symptoms and heavy bleeding. She instructed her four children to let her know if they saw blood on her clothes. Photo courtesy of Kellie Wallace.

For years she’d been experiencing such heavy bleeding during her period that blood would soak through her clothes in an hour and a half. She’d never experienced any previous gynecological problems and always had manageable and light periods. Wallace knew the bleeding wasn’t normal.

During a summer trip to Disney World with her husband and children, Wallace had to stop every hour to use the restroom. She constantly worried about stains on her clothing and asked her children to let her know if they saw any blood. The bleeding and constant worry was extremely embarrassing, Wallace said.

Her primary care physician confirmed what she thought: she had fibroids, benign tumors in her uterus, like the tumors she remembered her mother experiencing. Wallace’s doctor didn’t seem worried by the diagnosis and told her treatment wasn’t necessary since the tumors were not cancerous. Wallace didn’t agree.

After a trip to her gynecologist revealed multiple fibroids, one Wallace said was the size of an infant’s head, her doctor told her the tumors needed to be surgically removed. What Wallace didn’t realize at the time was that her doctor intended to remove her uterus and cervix as well, during a hysterectomy in July 2012.

Her physician recommended a laparoscopic hysterectomy in which she made multiple, small incisions in Wallace’s abdomen and used a lighted camera to see the pelvic organs and cut the uterus into small sections. The uterus was then removed through the incisions.

“When my gynecologist said, ‘it has to come out’ I thought she just meant the tumor,” Wallace said. “But I didn’t realize she meant my uterus, too. I trusted her in that decision, but I still wonder if she could have done something else just to remove the tumor.”

Number of hysterectomies uncertain

The number of hysterectomies performed by surgeons each year remains uncertain.

The Centers for Disease Control and Prevention, or CDC, estimates that 600,000 women have a hysterectomy each year. The American College of Obstetricians and Gynecologists study from 2013 found that the number of hysterectomies done annually peaked in 2002 at 681,234 and then declined each following year.

However, neither the American College of Obstetricians and Gynecologists study nor the CDC’s figures evaluate the number of out-patient procedures in which the woman was able to return home the same day. The CDC’s number has not been updated since 2008.

As less invasive laparoscopic and robotic hysterectomies become more common, more women opt to undergo the surgery as an out-patient procedure. Often a less expensive surgery with a shorter recovery time, many women find the option more attractive than a procedure that requires a lengthy hospital stay.

Nora Coffey, president of the HERS Foundation, a non-profit advocacy group that offers educational resources about hysterectomy, doesn’t buy the CDC’s figures. She thinks a more realistic number of annual hysterectomies is closer to 620,000 after accounting for in-patient and out-patient surgeries.

The CDC declined to respond to Coffey’s multiple requests for data on the number of out-patient hysterectomies, Coffey said. The hysterectomy fact sheet that listed statistics about the procedure was removed from the CDC’s website in 2012.

Not a benign surgery

Hysterectomy is thought to cause a variety of after-effects, though some studies disagree on the extent of the procedure’s effects on a woman’s body.

Risks associated with the surgery include potential injury to the bowel and bladder during the operation, which may lead to incontinence and infection.

Some studies show a woman’s chance of heart disease increases three times after hysterectomy and five times if the ovaries are also removed during surgery, Coffey said.

Women are at an increased risk for accelerated bone loss after a hysterectomy, particularly if the ovaries are removed. If a pre-menopausal patient loses her ovaries during the procedure, she is thrown into menopause since her hormone levels are altered. Early menopause can result in mood swings, depression and weight gain. Many physicians recommend women begin taking estrogen after ovary removal to balance hormonal changes.

Studies suggest a link between pain during sexual intercourse and hysterectomy, according to the Office on Women’s Health under the U.S. Department of Health and Human Services.

Coffey believes most women don’t understand the lifelong functions of their female organs or the full consequences of removing them. She advocates giving women the information needed to make fully informed medical decisions.

Like any other surgical procedure, hysterectomy requires informed consent from the patient before a surgeon can proceed. Informed consent implies that the patient understands the reason for the hysterectomy, possible alternative treatments or need for further testing, expected outcome of the procedure, potential side-effects and complications, as well as the consequences of non-treatment, according to the National Institutes of Health.

Informed consent requires that a physician truthfully explain the procedure in ways the patient can readily understand without using overly scientific language. Though implied consent exists in theory, it is often difficult to execute.

A patient cannot give informed consent about a surgical procedure without being given the information that is requisite for informed consent for the surgery, like the functions of the organs and consequences of their removal, Coffey said.

Coffey underwent a hysterectomy in 1978 to treat a large, benign ovarian cyst that caused bleeding and abnormal vaginal pressure. Based on ultrasounds, her physician thought she had ovarian cancer and presented hysterectomy with ovary removal as the only option to save her life, she said. Her doctor didn’t offer any information about the aftermath of the surgery. After the hysterectomy, Coffey’s physician realized she never had ovarian cancer.

Coffey experienced a range of devastating consequences she attributes to the hysterectomy, effects like loss of sexual desire for her husband and loss of short-term memory, as well as intense bone and joint pain.

She now believes the most important factor before a woman decides to have a hysterectomy is that she understands the procedure and the after-effects, she said.

“If you don’t know what you’re choosing, then buyer beware,” Coffey said. “The important thing from my perspective is that women be educated about their bodies and their organs and what they do.” If women were really aware of the consequences of the surgery, they wouldn’t choose hysterectomy, she said.

The HERS Foundation offers counseling services to women who have undergone or are considering a hysterectomy. The foundation frequently refers women to alternate physicians for second opinions.

Coffey estimates that HERS counsels 10,000 women each year and of the women who seek more information and learn about the consequences of the surgery, about 98 percent choose an alternative to hysterectomy, Coffey said.

Like Coffey, Wallace recalls that her physician presented hysterectomy as her only option and did not discuss alternatives to the surgery, Wallace said.

“The only choice she gave me was to have the hysterectomy or not to have it,” she said. “I didn’t do any other research because when she told me I needed it I didn’t think I had a choice.”

Holly Ford, the gynecologist who performed Wallace’s hysterectomy two years ago, said she makes a concerted effort to inform her patients before they agree to a procedure.

She emphasizes three areas when talking with a patient about a treatment: benefits, side-effects and alternative treatment options. Ford thinks it’s important to develop a relationship with a patient over multiple clinic visits to ensure informed consent, she said. She recalls meeting with Wallace more than once before scheduling her hysterectomy.

When a physician first mentions the possibility of a hysterectomy, a patient can often stop listening to the rest of the information the doctor provides, Ford said.

“I do the best I can to try to provide patients with my best medical opinion and all the information that’s available to me,” she said. “And then they have to make the decision. I think hysterectomy remains a viable option for certain women in certain cases, but it’s certainly not the only alternative.”

Wallace’s doctor gave her a choice about whether to keep her ovaries or not, Wallace said. Ford offered to remove Wallace’s ovaries to eliminate 90 percent of the risk for ovarian cancer, ovarian cysts or additional surgery in the future.

The lifetime risk of ovarian cancer for an average woman with no family history of cancer is 1.5 percent and not enough to warrant removing the ovaries, said Octavio Chirino, chair of the Missouri section of the American College of Obstetricians and Gynecologists.

Wallace’s family had no history of any type of cancer and she had none of the leading risk factors for ovarian cancer as determined by the CDC. She opted to keep her ovaries to prevent early menopause despite her doctor’s recommendation.

Alternative treatment options

Non-surgical and less invasive options now exist to treat many of the conditions that cause women to seek a hysterectomy.

Abdominal hysterectomy remains the most common form of hysterectomy performed annually, with the majority of women seeking surgery for fibroid tumors (leiomyomo) and abnormal bleeding. Image by the American College of Obstetricians and Gynecologists.

Abdominal hysterectomy remains the most common form of hysterectomy performed annually, with the greatest number of women seeking surgery for fibroid tumors (leiomyoma) and abnormal bleeding. Image by the American College of Obstetricians and Gynecologists, 2013.

Hysterectomy for benign conditions like abnormal bleeding and fibroids is becoming increasingly difficult to justify as alternative treatments become more common, according to the Organization for Economic Cooperation and Development.

An intrauterine device can be inserted into the uterus to regulate abnormal bleeding. Endometrial ablation is an outpatient procedure in which the uterine lining, or endometrium, is destroyed, usually by lasers or heat. The procedure can help control excessive menstrual bleeding.

Depending on size, a fibroid can be removed through a procedure called a myomectomy, in which only the tumor is removed and uterus left untouched. Many fibroids cause few or no symptoms and do not require treatment, according to the Office on Women’s Health.

Katherine Welch, an obstetrician and gynecologist at Women’s Health Associates in Columbia, estimates that she does two or three hysterectomies each month.

She thinks the number of surgeries she performs has decreased in the 16 years she’s been in practice. When counseling her patients about treatment options, Welch believes it’s important for women to be aware of the risks of hysterectomy before making a decision, she said.

However, once you’ve tried and failed at all the alternative treatment methods, the only thing left to offer a woman is a hysterectomy, Welch said.

“I think now physicians are trying to avoid hysterectomy as much as possible as a front line treatment,” Welch said. “It depends on the patient and it depends on the physician and what they can do.”

Some physicians see elective hysterectomy as the only surefire way to stop a woman’s symptoms, particularly abnormal bleeding.

“It’s elective because it’s not cancer, you’re not going to die from it,” said Chirino, Missouri section chair of the American College of Obstetricians and Gynecology. “But it’s a quality of life issue. There are a lot of good reasons for hysterectomy.”

Chirino points to a hypothetical example of a woman beyond childbearing age, with three children, who has not entered menopause and is experiencing severe and prolonged menstrual periods lasting for 10 days each month.

The patient may undergo an endometrial ablation that may or may not be effective to stop the bleeding. Since the patient is no longer in her childbearing years, she no longer needs her uterus, he said. A hysterectomy is the best alternative to improve the woman’s quality of life if the ablation doesn’t work, he said. Many patients opt for a hysterectomy because it’s the alternative that is most certain to remedy their symptoms, Chirino said.

“A lot of times, hysterectomies are patient-driven, not physician-driven,” Chirino said.

Studies suggest the uterus provides functions beyond childbearing. Muscles and ligaments connect the uterus to the upper portion of the vagina and must be reattached during surgery after the uterus is removed. Connective tissues could be weakened after removal of the uterus and contribute to pelvic prolapse, sagging of the pelvic organs into the vagina. It’s difficult to determine if hysterectomy or the prior condition necessitating hysterectomy is the cause of prolapse.

Welch believes a culture has developed around hysterectomy that leads some women to think the procedure is necessary for them to undergo even if it isn’t medically their only treatment option, she said. Some women think they need to have a hysterectomy just because their mother and grandmother had one, despite the surgery’s effects, Welch said.

“Most medical care providers are trying to give patients the time and the data to go home and think before making a decision and posting them for surgery,” she said. “I think we do a pretty good job of that when we’re given enough time with our patients.”

Wallace doesn’t think she was given all the information she needed to make an informed decision like the ones Welch and Coffey advocate. She wasn’t made aware of the potential effects of the surgery or possible alternatives to treat the tumors in her uterus.

Two years after her hysterectomy, Wallace is experiencing symptoms she thinks could be related to the procedure, including bladder issues.

“Things I think are just signs of aging could be side-effects of having the surgery and I just didn’t know. My doctor didn’t mention it to me,” she said. “I guess I don’t regret it, but I do wish if there had been other options that my doctor would have discussed those with me.”

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