In 2014, a Texas hospital refused to remove a woman who was declared brain-dead after suffering a blood clot from life support—even though, according to her family and husband, she had made it clear that she didn’t want to remain on a ventilator. The hospital refused because she was 14 weeks pregnant, and they said that Texas law prohibited them from removing a pregnant woman from life support, even if it’s what she expressly wanted.
The family successfully sued—the authors of the law in question said that the hospital was misinterpreting it, and the fetus was no longer viable. But in more than half of America’s states, there are laws on the books that put limits on the types of choices that can be made for a pregnant woman without the ability to make her own medical decisions. Further, in many states, that information is not disclosed on the paperwork people fill out describing what they want to happen if they cannot make their own medical decisions.
“I work in the intensive care unit and provide end of life care,” says Erin DeMartino, a pulmonary and critical care physician at Mayo Clinic in Minnesota. “It’s rare that these circumstances come up, and yet they’re all over the law books. It’s surprising.”
DeMartino led an analysis, published today in the Journal of the American Medical Association, which identified laws around the country that restrict treatment decisions for incapacitated women who are also pregnant. Twenty five states will invalidate an advanced directive, in which a person set out their priorities and wishes in the case that they were incapacitated, for someone who is pregnant. In 19 states, the person given the power to make medical decisions on behalf of an incapacitated person have restrictions on the choices they’re able to make.
Twelve states require that a pregnant woman be kept on life support until the fetus can be delivered, regardless of that woman’s advance wishes and if the fetus is likely to survive. In 19 states, pregnant women are kept on life support if a physician determines that the fetus is likely to make it to term. In Alaska, Georgia, and Oklahoma, the law requires doctors to test for pregnancy before removing life support from women who are of childbearing age.
“Advanced directives were created as a way of safeguarding an individual autonomy. Pregnancy is the only medical condition I can think of where an advance directive is automatically invalidated on the basis of a diagnosis,” DeMartino says. “If we as a country feel that autonomy is a fundamental right, and necessary to uphold in our model of providing western medical care, we need to think about how we balance taking away someone’s autonomy against the interests of a fetus. I think that is the crux of the issue that is raised by these laws.”
Many of the laws were written decades ago, with little attention since, she says—and may be worth revisiting. Connecticut, for example, repealed it’s laws around advanced directive and pregnancy in 2018. Four women sued over Idaho’s laws in 2018.
Despite the significant ways a pregnancy would shift the type of care a woman is able to receive if she should become incapacitated, the majority of states do not include information about those laws on advanced directive paperwork. So, someone could fill out a document stating that they do not want to be put on a ventilator without knowing that, if they’re pregnant and are in some kind of accident, that instruction will be ignored. Only two states that restrict the way care can be withdrawn from pregnant women disclose that information on their advance directive forms.
“To not transparently disclose it to a woman who is completing a directive in good faith is certainly troubling,” DeMartino says. “In some cases, perhaps could have been an administrative oversight, but it’s surprising how often it happens, and how often we encounter these documents that didn’t disclose what was in the law.”
It’s important for physicians to be aware of these laws and the limited information provided about them on advanced directive paperwork, she says. And it’s especially important, she says, for young women and their families to know that these laws exist. Particularly if someone is facing a high risk pregnancy or has an illness of some kind and is pregnant, it’s important to understand local policies and discuss end of life wishes. They might consider leaving pregnancy-specific directions on an advanced directive. “It’s evidence of an individuals wishes that can be used in clinical decision making, and potentially in a court of law if it comes to that,” DeMartino says.
Barring those specific circumstances, it’s hard to anticipate all of the things a person might face if they were suddenly ill or had an accident. “I would actually not recommend someone leave detailed instructions unless a really foreseeable end of life situation could occur,” she says. Envisioning the potential outcomes might be more upsetting than it’s worth, and might not be clinically useful. “More useful is a general conversation with loved ones, and saying, these are my values and what I’d be willing to go through.”
While these laws remain on the books in most states, DeMartino wants women to know that they’re there. “I want to make sure women have some understanding that these statutes exist, so that they can maintain as much control over their healthcare as possible. In many cases, that might mean they want to continue a pregnancy at all costs,” she says. “But I want to make sure they understand.”