Preparing For a Hysterectomy: It’s Not a One Day Affair

Pamela Merritt

Life doesn’t stop when a person finds out they will have to have major surgery.  It keeps churning on and all the things associated with preparing for surgery gets added to the weekly to-do list.

Recently, I wrote about the treatment of my uterine fibroids.  After consulting with my doctor and getting a second opinion, I am now preparing for a hysterectomy.  On television hospital dramas patients are shown opting for and have surgery in one tidy episode.  In reality, there is usually a lead up to surgery unless a patient is facing a medical emergency. Life doesn’t stop when a person finds out they will have to have major surgery.  It keeps churning on and all the things associated with preparing for surgery gets added to the weekly to-do list.

The first thing I noted is that preparing for surgery costs money.  I have health care insurance through my employer, but I am responsible for co-pays for appointments and prescriptions.  There was the initial doctor’s visit, which was followed by another visit for a second opinion.  I’ve had appointments for blood tests and an ultra-sound to confirm the size and location of my fibroids.  With every appointment there have been co-payments and the charges are starting to add up.  I can’t help but wonder how often people delay tests or visits because they just don’t have the cash.  I’ll have to pay another co-pay for the surgery itself, another for the stay in the hospital and my surgeon’s work.

I’m also faced with scheduling all these medical visits and tests into my already hectic life.  I told my employer about my diagnosis and surgery and that I will have to take a medical leave of 4 to 6 weeks.  There are laws that protect employment during absences due to medical care, but I have to confess to being stressed out about the timing of everything because my surgery date has not been set.  I keep thinking about my responsibilities at work, in my community and with my family.  Like many women, I’m struggling to put myself first and balance the emotional stress of facing surgery with my day-to-day responsibilities.  I’m stressed about the situation and stressed about being stressed about the situation.

The biggest challenge on the table is getting myself in the best physical condition I can prior to surgery.  I’m taking iron supplements, eating better and trying to get more sleep.  I’ve scheduled my yearly physical with my primary care doctor so we can put together a plan.  And I’m taking more time to relax and unwind, because stress isn’t going to make this situation any better. 

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As I explored in my previous article, a lot of people have a lot of opinions about my choice to have a hysterectomy.  I’ve received numerous emails of support and concern and I’m grateful for the advice and resources.  I’m aware that there is a history of women being encouraged to have a hysterectomy rather than consider other less invasive options to treat fibroids.  Knowing that history has empowered me throughout my treatment to challenge my doctors, research my options and explore alternatives.  As a result, my surgery is an empowered decision that I feel confident about.  I’m not naïve about the risks nor do I have any illusions about the potential impact to my long-term health. 

The most important lesson I’ve learned since being diagnosed with fibroids nearly a decade ago is that I need to take control as a patient.  I’ve put together a binder to organize everything associated with my surgery.  I’m doing a lot of research on the best ways to prepare for a speedy recovery.  In the coming weeks I’ll put together a budget, go over all the paperwork associated with taking a medical leave from work and put together a comprehensive plan to prepare physically, financially and emotionally for major surgery.  I have a great support network of family, friends and co-workers and I’m letting them know what I’m facing so they can be there for me.  In many ways, that’s been the hardest thing to do since I take great pride in being independent.  But there’s another thing I’ve learned along the way – getting support from the people that care about you is not a sign of weakness, it’s a sign of a strength.

News Health Systems

Complaint: Citing Catholic Rules, Doctor Turns Away Bleeding Woman With Dislodged IUD

Amy Littlefield

“It felt heartbreaking,” said Melanie Jones. “It felt like they were telling me that I had done something wrong, that I had made a mistake and therefore they were not going to help me; that they stigmatized me, saying that I was doing something wrong, when I’m not doing anything wrong. I’m doing something that’s well within my legal rights.”

Melanie Jones arrived for her doctor’s appointment bleeding and in pain. Jones, 28, who lives in the Chicago area, had slipped in her bathroom, and suspected the fall had dislodged her copper intrauterine device (IUD).

Her doctor confirmed the IUD was dislodged and had to be removed. But the doctor said she would be unable to remove the IUD, citing Catholic restrictions followed by Mercy Hospital and Medical Center and providers within its system.

“I think my first feeling was shock,” Jones told Rewire in an interview. “I thought that eventually they were going to recognize that my health was the top priority.”

The doctor left Jones to confer with colleagues, before returning to confirm that her “hands [were] tied,” according to two complaints filed by the ACLU of Illinois. Not only could she not help her, the doctor said, but no one in Jones’ health insurance network could remove the IUD, because all of them followed similar restrictions. Mercy, like many Catholic providers, follows directives issued by the U.S. Conference of Catholic Bishops that restrict access to an array of services, including abortion care, tubal ligations, and contraception.

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Some Catholic providers may get around the rules by purporting to prescribe hormonal contraception for acne or heavy periods, rather than for birth control, but in the case of copper IUDs, there is no such pretext available.

“She told Ms. Jones that that process [of switching networks] would take her a month, and that she should feel fortunate because sometimes switching networks takes up to six months or even a year,” the ACLU of Illinois wrote in a pair of complaints filed in late June.

Jones hadn’t even realized her health-care network was Catholic.

Mercy has about nine off-site locations in the Chicago area, including the Dearborn Station office Jones visited, said Eric Rhodes, senior vice president of administrative and professional services. It is part of Trinity Health, one of the largest Catholic health systems in the country.

The ACLU and ACLU of Michigan sued Trinity last year for its “repeated and systematic failure to provide women suffering pregnancy complications with appropriate emergency abortions as required by federal law.” The lawsuit was dismissed but the ACLU has asked for reconsideration.

In a written statement to Rewire, Mercy said, “Generally, our protocol in caring for a woman with a dislodged or troublesome IUD is to offer to remove it.”

Rhodes said Mercy was reviewing its education process on Catholic directives for physicians and residents.

“That act [of removing an IUD] in itself does not violate the directives,” Marty Folan, Mercy’s director of mission integration, told Rewire.

The number of acute care hospitals that are Catholic owned or affiliated has grown by 22 percent over the past 15 years, according to MergerWatch, with one in every six acute care hospital beds now in a Catholic owned or affiliated facility. Women in such hospitals have been turned away while miscarrying and denied tubal ligations.

“We think that people should be aware that they may face limitations on the kind of care they can receive when they go to the doctor based on religious restrictions,” said Lorie Chaiten, director of the women’s and reproductive rights project of the ACLU of Illinois, in a phone interview with Rewire. “It’s really important that the public understand that this is going on and it is going on in a widespread fashion so that people can take whatever steps they need to do to protect themselves.”

Jones left her doctor’s office, still in pain and bleeding. Her options were limited. She couldn’t afford a $1,000 trip to the emergency room, and an urgent care facility was out of the question since her Blue Cross Blue Shield of Illinois insurance policy would only cover treatment within her network—and she had just been told that her entire network followed Catholic restrictions.

Jones, on the advice of a friend, contacted the ACLU of Illinois. Attorneys there advised Jones to call her insurance company and demand they expedite her network change. After five hours of phone calls, Jones was able to see a doctor who removed her IUD, five days after her initial appointment and almost two weeks after she fell in the bathroom.

Before the IUD was removed, Jones suffered from cramps she compared to those she felt after the IUD was first placed, severe enough that she medicated herself to cope with the pain.

She experienced another feeling after being turned away: stigma.

“It felt heartbreaking,” Jones told Rewire. “It felt like they were telling me that I had done something wrong, that I had made a mistake and therefore they were not going to help me; that they stigmatized me, saying that I was doing something wrong, when I’m not doing anything wrong. I’m doing something that’s well within my legal rights.”

The ACLU of Illinois has filed two complaints in Jones’ case: one before the Illinois Department of Human Rights and another with the U.S. Department of Health and Human Services Office for Civil Rights under the anti-discrimination provision of the Affordable Care Act. Chaiten said it’s clear Jones was discriminated against because of her gender.

“We don’t know what Mercy’s policies are, but I would find it hard to believe that if there were a man who was suffering complications from a vasectomy and came to the emergency room, that they would turn him away,” Chaiten said. “This the equivalent of that, right, this is a woman who had an IUD, and because they couldn’t pretend the purpose of the IUD was something other than pregnancy prevention, they told her, ‘We can’t help you.’”

 

Tell us your story. Have religious restrictions affected your ability to access health care? Email stories@rewire.news

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What Happens When a Catholic-Run Clinic Comes to Your Local Walgreens?

Amy Littlefield

“It causes us great concern when we think about vulnerable populations ... [who] may need to use these clinics for things like getting their contraception prescribed and who would never think that when they went into a Walgreens they would be restricted by Catholic doctrine,” Lorie Chaiten, director of the women’s and reproductive rights project of the ACLU of Illinois, told Rewire.

One of the largest Catholic health systems is set to begin running health clinics inside 27 Walgreens stores in Missouri and Illinois next week. The deal between Walgreens and SSM Health has raised concerns from public interest groups worried that care may be compromised by religious doctrine.

Catholic health systems generally follow directives issued by the U.S. Conference of Catholic Bishops that restrict access to an array of services, including abortion care, contraception, tubal ligations, vasectomies, and fertility treatments.

“We are concerned that the clinics will likewise be required to follow the [directives], thereby severely curtailing access to important reproductive health services, information, and referrals,” MergerWatch, the National Health Law Program, and the American Civil Liberties Unions of Illinois and Missouri wrote in a letter to Walgreens on Wednesday. They also sent a letter to SSM Health.

In a statement emailed to Rewire, Walgreens said its relationship with SSM Health “will not have any impact on any of our current clinic or pharmacy policies and procedures.”

SSM Health emailed a statement saying it “will continue to offer the same services that are currently available at Walgreens Healthcare Clinics today.” If a patient needs services “that are beyond the scope of what is appropriate for a retail clinic setting, they will be referred to a primary care physician or other provider of their choice,” the statement read.

A spokesperson for SSM Health demurred when Rewire asked if that would include referrals for abortion care.

“I’ve got to check this part out, my apologies, this is one that hadn’t occurred to me,” said Jason Merrill, the spokesperson.

Merrill later reiterated SSM Health’s statement that it would continue to offer the same services.

Catholic health systems have in recent years expanded control over U.S. hospitals, with one in six acute-care hospital beds now in a Catholic-owned or -affiliated facility. Patients in such hospitals have been turned away while miscarrying, denied tubal ligations, and refused abortion care despite conditions like brain cancer.

Catholic health systems have also expanded into the broader landscape of outpatient services, raising new questions about how religion could influence other forms of care.

“The whole health system is transforming itself with more and more health care being delivered outside the hospital,” Lois Uttley, director of MergerWatch, told Rewire. “So we are looking carefully to make sure that the religious restrictions that have been such a problem for reproductive health care at Catholic hospitals are not now transferred to these drug store clinics or to urgent care centers or free-standing emergency rooms.”

Walgreens last year announced a similar arrangement with the Catholic health system Providence Health & Services to bring up to 25 retail clinics to Oregon and Washington. After expressing concerns about the deal, the ACLU of Washington said it received assurances from both Walgreens and Providence that services at those clinics would not be affected by religious doctrine.

Meanwhile, the major urgent care provider CityMD recently announced a partnership with CHI Franciscan Health–which is affiliated with Catholic Health Initiatives–to open urgent care centers in Washington state.

“We’re seeing [Catholic health systems] going into the urgent care business and into the primary care business and in accountable care organizations, where they are having an influence on the services that are available to the public and to consumers,” Susan Berke Fogel, director of reproductive health at the National Health Law Program, told Rewire.

GoHealth Urgent Care, which describes itself as “one of the fastest growing urgent care companies in the U.S.,” announced an agreement this year with Dignity Health to bring urgent care centers to California’s Bay Area. Dignity Health used to be called Catholic Healthcare West, but changed its name in 2012.

“This is another pattern that we’ve seen of Catholic health plans and health providers changing their names to things that don’t sound so Catholic,” Lois Uttley said.

 

In the letters sent Wednesday, the National Health Law Program and other groups requested meetings with Walgreens and SSM Health to discuss concerns about the potential influence of religion on the clinics.

“It causes us great concern when we think about vulnerable populations, we think about low-income people… people who… may need to use these clinics for things like getting their contraception prescribed and who would never think that when they went into a Walgreens they would be restricted by Catholic doctrine,” Lorie Chaiten, director of the Reproductive Rights Project of the ACLU of Illinois, told Rewire.

The new clinics in Walgreens will reportedly be called “SSM Health Express Clinics at Walgreens.” According to SSM Health’s website, its initials “[pay] tribute” to the Sisters of St. Mary.

“We are fairly forthcoming with the fact that we are a mission-based health care organization,” Merrill told Rewire. “That’s something we embrace. I don’t think it’s anything we would hide.”

 

Tell us your story. Have religious restrictions affected your ability to access health care? Email stories@rewire.news

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