Doctors recount ‘heart-wrenching’ stories in new study on medical care post-Roe
After the U.S. Supreme Court overturned Roe last summer, pregnant patients and their providers are fearful of breaking the law as they navigate health care crises and the changing legal landscape surrounding abortion bans, according to initial findings of the Care Post Roe study. (Getty Images)
Researchers at the University of California San Francisco (UCSF) are trying to piece together how the end of Roe v. Wade has so far transformed pregnancy-related medical care in America, and the yet-to-be-released preliminary data are alarming, the lead principal investigator told States Newsroom in an exclusive interview.
The team has already received dozens of stories about health care providers directing patients to continue very high risk or doomed pregnancies, which they might not have done before their states criminalized abortion.
“The stories are really heart-wrenching,” said Dr. Daniel Grossman, who directs Advancing New Standards in Reproductive Health (ANSIRH) at UCSF, which last October launched the Care Post Roe study, which draws from a survey in which participants share anecdotes either anonymously or stripped of identifying details.
Through this limited qualitative study, researchers are learning how clinical care deviated from “the usual standard,” since last June, when the U.S. Supreme Court overturned Roe. Grossman said his researchers have so far received around 50 “valid complete submissions” about patients who live in about half of the approximately dozen states that currently or previously banned abortion (totally or partially), including Arizona, Georgia, and Indiana.
A theme of fear is emerging from the data, Grossman said. Not only are providers scared of flouting new laws, but some patients are terrified just to be pregnant in states with abortion bans and are traveling long distances when problems arise.
“[T]hey were too scared to even go seek care in that state because they were worried about what might happen to them,” Grossman said. “So, they traveled long distances to another state to be evaluated. And sometimes it turned out they weren’t even pregnant. Sometimes it turned out they had had a miscarriage that had actually already been completed and they didn’t need any treatment. And in one case, the patient had an ectopic pregnancy, where she should have been able to get that treatment where she lived.”
‘Patients were being sent home’
Providers told researchers about cases of premature rupture of membranes in the second trimester, Grossman said, noting that the standard of care in these cases is to offer termination, given the high risk of infection and low probability of a live birth.
“And instead, in these cases, patients were being sent home,” he said. “And then they come back with infection, and several of them developed very severe infection that required very complicated management in the intensive care unit.”
Additionally, UCSF researchers have learned about several cases of patients whose fetuses had no chance of survival but had to leave their state to have abortions, an increasingly common story.
Grossman said providers have described having to jump through hoops to treat patients with ectopic pregnancies, a dangerous condition that occurs in approximately 1 to 2 percent of pregnancies in the U.S., in which the embryo has implanted outside the main cavity of the uterus. More than 90 percent of the time, the embryo gets stuck on its way to the uterus in the fallopian tube, where it does not have enough room to grow and cannot survive. If caught early, ectopic pregnancies are most commonly treated with one of the drugs in a typical medication abortion, or with surgery. Left untreated, the tube can rupture and cause uncontrollable bleeding.
Currently, less than 50 people die from ectopic pregnancies annually, according to University of California Davis complex-family-planning specialist Dr. Mitchell Creinin. However, OB-GYNs have expressed concerns that that number could rise due to new post-Roe policies.
And through the Care Post Roe qualitative study, Grossman has become concerned that some doctors are hedging how to treat the rarest type of ectopic pregnancy, which occurs when the embryo implants in a woman’s scar from a previous cesarean section. As the pregnancy grows, the uterus can rupture and cause what Grossman calls “catastrophic bleeding.” The Society for Maternal-Fetal Medicine recommends terminating cesarean scar ectopic pregnancies because they pose fatal risks to pregnant people (the complication rate can be as high as 44 percent) and rarely result in live births.
Despite being a rare condition – an estimated 1/1,800 to 1/2,500 of all C-section deliveries – Grossman said his team has already heard about a few cases in which patients could not access recommended treatment for cesarean scar pregnancies. What’s trickier about this type of ectopic pregnancy, he said, is that the outcome is not necessarily 100 percent fatal. There have been reported cases of survival for the pregnant person and baby, and if the embryo has cardiac activity, sometimes providers are reluctant to recommend termination.
“[There have been] several cases where it’s been hard to arrange treatment for those patients in the states where they live,” Grossman said. “And sometimes they just have to follow the patient because the patient can’t travel elsewhere. And they’re just watching the placenta kind of grow through the uterine wall into surrounding structures. It’s really very concerning.”
Texas high-risk OB-GYN Patricia Santiago-Munoz says the option to continue a risky pregnancy like this should be up to the patient. The maternal fetal medicine specialist at the University of Texas Southwestern Medical Center in Dallas published a blog post last August to inform patients that treatment for cesarean scar ectopic pregnancies are legal under Texas’s abortion law.
But as has been true in Texas and in many of the 12 other states where abortion is currently banned, patients have been reportedly experiencing denials and delays in care. These laws level harsh penalties for doctors, many of whom are confused how to navigate narrow or vaguely worded “life of the mother” exceptions.
Lawmakers and health officials in multiple states are currently trying to adopt more explicit health exceptions in their abortion bans. But Grossman says determining what constitutes life-threatening and how immediately life-threatening can be difficult – and daunting.
“The problem in general with these exceptions is that medicine is not black and white; there’s a lot of gray,” Grossman said. “In many situations a patient can be okay and kind of slowly start deteriorating, and then a condition can suddenly deteriorate very quickly. How big a chance of that happening is considered too big? That is what physicians and hospital administrators are facing now in this new era.”
Fear, not fear mongering
Many anti-abortion groups, meanwhile, are lobbying GOP lawmakers to oppose proposed health exceptions. In Tennessee, anti-abortion groups are clashing with state lawmakers who support changing the way the law criminalizes doctors. Sen. Richard Briggs (R-Knoxville), a heart surgeon, last year said he regrets voting for the ban after realizing how it could exacerbate medical emergencies, including cesarean scar ectopic pregnancies.
Grossman acknowledges that Care Post Roe is a very limited study that relies on a relatively small number of anecdotes, many of which are submitted anonymously. He said this was the best way to protect the identity of health providers and patients, many of whom currently fear prosecution for their medical decisions.
That fear is not unfounded, given that many hospital systems have instructed doctors not to talk publicly about the public health effects of overturning Roe. One OB-GYN, Indiana Dr. Caitlin Bernard, is being investigated for telling a reporter about treating an Ohio child, who had been denied an abortion even though she was 10 years old and had been raped.
The study also invites participants to do in-depth follow-up interviews with UCSF researchers, and Grossman said they’ve done about a dozen so far. Otherwise, they don’t verify the submissions they receive beyond assessing whether they make clinical sense. He also said the submissions have so far been very detailed.
And they mirror many similar stories recounted to journalists and researchers around the country, and borne out in other recent research, like a Commonwealth Fund study that found higher rates of maternal and infant mortality in states with strict abortion restrictions, and a Women’s Health Issues study that concluded that OB-GYNs practicing in states with heavy abortion restrictions are less likely than OB-GYNs in states with abortion rights to have received abortion training, and thus less likely to offer optimal care in all cases.
The anti-abortion movement, meanwhile, has shrugged its collective shoulders at these outcomes. Among many anti-abortion groups, the American Association of Pro-Life Obstetricians and Gynecologists has engaged in a concerted media campaign to dispel stories about care denials as fear-mongering. Instead they blame doctors for their decisions.
“False claims abound that state abortion restrictions will prevent physicians from being able to treat ectopic pregnancies, miscarriage, and other life-threatening complications in pregnancy (such as an intrauterine infection). This is blatantly absurd, as not a single state law restricting abortion prevents treating these conditions,” AAPLOG president-elect Dr. Christina Francis testified before Congress last July.
The group is one of the plaintiffs in a lawsuit that would ban an abortion-inducing drug that pregnant people post-Roe have relied on to have safe early terminations, under the false narrative that the drug is unsafe.
An AAPLOG email to members sent on Jan. 6 urged the providers in its network to participate in the Care Post Roe study, but to give different stories from what the UCSF researchers are asking for.
“We encourage members to submit their stories about the abysmal care that medication abortion patients are receiving and the horrendous complications which you are treating in the Emergency Room because the abortionists abandoned their patients to the ER for management of complications,” the email read. That’s also the crux of one of their main arguments in the lawsuit – that patients are flooding emergency rooms because of increased use of medication abortion. Yet they’re basing that claim on speculation and a small number of anecdotes.
Grossman is not aware of any such submissions. But he noted that the team has excluded submissions that were incomplete or vague or didn’t make clinical sense and didn’t meet the inclusion criteria, which was to reflect changes in care after a change in law.
AAPLOG did not respond to a request for comment.
As doctors and abortion providers continue to warn about dire consequences to come, Grossman said his team has been receiving new stories every week about changes in medical care because of abortion bans. He said UCSF continues to solicit study participants and will begin releasing their preliminary findings in the coming month or two.
“We hope that these findings will be useful for hospital systems as they’re trying to figure out workarounds to provide care,” Grossman said.