Jennifer (a pseudonym) is a health professional and mother of two in Washington State. She has provided care for pregnant women in both religious hospitals and non-religious ones, but she happened to be working at a Catholic hospital when she had a miscarriage herself, between her first and second child. Because this Catholic hospital was the only option for care in her area -- as it is in many areas -- she ultimately wound up there for treatment. It did not go well.
Catholic healthcare networks have expanded significantly in recent years. They now contain one out of every nine acute care beds in the U.S. In some states, where they are best established, they account for about 1/3 of the care. In Washington, Catholic health networks are expanding rapidly by buying non-Catholic hospitals and merging their facilities. If all mergers go through, nearly 45 percent of Washington's hospitals will be Catholic.
Jennifer had been experiencing heavy vaginal bleeding for over a week when she went to her physician's office. He told her she was miscarrying and discussed her need for a dilation and curettage (D&C) to stop the bleeding and protect her health. A D&C is a procedure to empty the uterus; the same technique is used for both miscarriage management and abortion.
Abortion, unsurprisingly, is firmly prohibited in Catholic hospitals (along with contraception, sterilization, most fertility treatments and related services). Care must comply with the Ethical and Religious Directives for Catholic Health Care Services written by the U.S. Bishops. Jennifer's physician was not Catholic himself (Catholic hospitals employ and serve religiously diverse people), and the care is paid for by public funds and private insurance, not the Church. Nonetheless, her doctor was hesitant to schedule a D&C -- even one for a miscarriage -- in their Catholic hospital. She saw his resistance as him not wanting to attract the attention of the hospital's religious authorities:
I can see the factors that probably played into it. I think it was a combination of not wanting to do a D&C, probably not wanting to open that particular can of worms about whether it was okay to do a D&C. Because a scheduled one is even harder to get done in that hospital than one in the ER... if there's a D&C on the schedule for a possibly viable pregnancy, then the Ethics Board gets involved.
Due to her heavy bleeding, Jennifer's pregnancy wasn't viable, but there was a chance that the fetus still had cardiac activity. Preferring not to plead with the Ethics Board about the necessity of the doing a D&C, her doctor ordered a transfusion to address her extremely low iron levels from all the bleeding, and advised expectant management, which involved waiting for Jennifer's body to expel the pregnancy on its own. The transfusion raised her iron levels, but she still wound up in the hospital 12 hours later, as the bleeding continued. She knew she needed a D&C. Unfortunately for her, things did not move quickly in the emergency room.
It might not be completely clear to the lay reader -- or the typical patient -- where Catholic doctrine slowed down her treatment. But it was clear to Jennifer, since she worked in obstetrics. She knew they were trying to make sure the fetus had died before doing the D&C, so the miscarriage treatment would not be perceived by the Catholic hospital's Ethics Board as an abortion. Jennifer recalled,
They did so many ultrasounds. They ended up doing, I think, three, although I may have missed one. And I remember telling them over and over again, "This is not a viable pregnancy. I've been bleeding enough to need a transfusion for a week. This is not viable." And they're like, "Well, we just need to make sure." And I'm like, "Have you found any cardiac motion?" "No. But we need to check again because maybe we missed it. It's very early in your pregnancy."
Even knowing that the Catholic prohibition on abortion would complicate things, the delay was much longer than Jennifer expected. While there was no way at this point to save the pregnancy, she nonetheless ended up with three to four ultrasounds over seven hours in the emergency room to verify the fetus was dead. By the end of all that, her iron levels dropped so low she needed a second blood transfusion.
After the ultrasounds and the second transfusion, the D&C was performed in the operating room under general anesthesia. Her procedure went safely, and Jennifer moved on to try again getting pregnant, still hoping for a second child.
Unfortunately, transfusions carry risks. There are the well-known ones that people fear such as blood borne infections and transfusion reactions, but what happened to Jennifer as a result of the transfusion was both dangerous and less well-known. She was transfused with blood with Kell antigens, which in her case because her husband was already Kell positive, was grim; it meant that her next pregnancy was at risk for sudden fetal demise.
Jennifer and her husband endured an excruciatingly stressful pregnancy, desperately waiting and watching for problems.
The thing about Kell antibodies is that they're extremely unpredictable... basically, you can have a totally healthy fetus one day, and you can have a fetus in profound cardiac -- basically malfunction. They just stop being able to do anything with their excess fluid and they die. They die of congestive heart failure.
She explained, "They really didn't know what to do... We basically crossed our fingers." She remembers holding a joyous celebration when they arrived safely at the viability mark (approx. 24 weeks gestation), but they continued to be on edge until the very end as their daughter made it successfully to term.
Nonetheless, Jennifer continued to suffer the consequences of the transfusion as the Kell status of the pregnancy also influenced how she was able to give birth.
I ended up being [C-]sectioned a second time with her because I was Kell sensitized. I was planning a VBAC (vaginal birth after C-section), and with a VBAC... you have to go into spontaneous labor. So we were waiting on that and waiting on that and waiting on that, and [my physician] was getting more and more nervous... He said, "Well, I'm recommending a C-section." So, yeah, she went to term, but she was born by caesarean, which has, obviously, its own risks.
Because of the fear of Kell-based sudden fetal death, Jennifer had a second cesarean, which is a major surgery and can make for an especially difficult recovery if when you already have a child to care for. Thus Jennifer added her C-section as another negative outcome of the care for her miscarriage years earlier.
Transfusions present risks. C-sections present risks. Both are necessary and life-saving at times. But Jennifer would have preferred not to endure those risks purely because of the hospital's religious commitments, especially since those commitments were not her own. Had Jennifer not had so much obstetric knowledge, she would not have necessarily known that in a non-Catholic hospital she would have been offered a D&C at the outset (before the transfusions, before the seven hours of unnecessary ultrasounds). What are the chances that the average patient could understand how Catholic doctrine hindered standard treatment for miscarriage management in this case and caused unnecessary suffering?
The burning question from a variety of outside observers of the controversial problem of Catholic hospital expansion in the U.S., including those on both sides of the debate is: If there is really a problem, why don't we hear it from patients? Why don't they sue? Where are their voices in this matter? Everyone wants to know including those who defend the U.S. Bishops' right to restrict care and those who are concerned about patient autonomy and welfare.
I hope my research collecting patient experiences will shed light on these questions. For now, based on my previous research and Jennifer's story, I can think of three possible answers: 1) patients who don't work in obstetric care don't fully understand how their care was affected by doctrine (i.e. might have differed in a non-Catholic hospital); 2) when patients do understand they don't want to cast blame on health professionals who were doing their best to care for them given the institutional religious constraints; and/or 3) patients don't want to be known in their communities for complaining about personal health care experiences that can be highly emotional and potentially stigmatizing.
The last two were true for Jennifer. In the end, she didn't utter a word of complaint, because this was her workplace and the only hospital in town. She remained frustrated about the unnecessary ultrasounds, transfusions, and general health risks she endured due to the religious restrictions, but once her second child was born healthy, she moved on. She didn't want to bring negative attention upon herself or her colleagues, whom she respected and trusted were doing their best for her given their constraints. She didn't want her colleagues to resent her or suffer because of her. She might not have understood how her care was negatively impacted by doctrine if she wasn't a health care provider herself, but the very fact that her professional life was intertwined with the hospital also restricted her willingness to speak about it.
The effects of the doctrine on care are complex and merit a better response than telling women they can get their reproductive health needs met elsewhere. Ultimately, institutions providing ob-gyn care must be held to the same standards regardless of their religious affiliation -- and if not -- who will make sure patients understand how their care may be compromised?