Earlier this year, the story of Adriana Smith — a Georgia woman, declared brain dead, being kept alive by the state due to her pregnancy, without the consent or input of her family — has captured national attention.
Smith’s mother, April Newkirk, told a local Atlanta TV station in May after her daughter had been on life support for 90 days (with aggressive medical bills piling up) that the experience was “torture.” And it is all due to the laws in the state that required physicians to prioritize a potentially viable fetus over the will of Smith and her family.
Advance directives exist for a reason, as a means for a person to preemptively state in a legal document what they want to happen if they are near death or incapacitated in a lasting way. However, depending on the state you live in, your final wishes — like those of Smith and her family — can actually be ignored or bypassed just because you are pregnant.
Yes, this does functionally put an asterisk over the whole concept of an advanced directive for more than half of the population in the majority of U.S. states, particularly if you live in any of the nine states that automatically toss out a pregnant person’s advance directive:
- Alabama
- Indiana
- Kansas
- Michigan
- Missouri
- South Carolina
- Texas
- Utah
- Wisconsin
But that’s not the complete story. A 2019 study published in JAMA examined the way all states navigated pregnancy and advance directives and found that 39 states “identified pregnancy as a condition that influences either an incapacitated [patient’s] advance directive or surrogate decision making.”
They also noted some of the nuances that vary between states: which states test for pregnancy before they allow someone to be taken off life support (Alaska, Georgia and Oklahoma); the five states (Kentucky, New Hampshire, North Dakota, Pennsylvania, and South Dakota) that “specified that life-sustaining therapies may be discontinued if they cause the woman undue pain that cannot be alleviated by medication” and the lone state (Pennsylvania) that offers to take on the financial burden of keeping a pregnant person on life support in these situations.
Yet, among these states, the actual laws are hardly public knowledge — only eight of the states’ advance directive documents seek someone’s “pregnancy-specific care preferences.” Of the 31 states that had restrictions on taking pregnant people off life support, 29 of these states have restrictions in their state statutes. However, 69% of the advance directive forms from these states made no mention of them.
And these are meant to be thorough forms — after all, they are one of the few things to speak up for you when you can’t speak for yourself.
“When you fill out an advance directive, there’s typically a lot of questions,” Stacey Lee, professor at Johns Hopkins Carey Business School and Bloomberg School of Public Health, said. “The majority of states are silent about what happens when you become pregnant. You may think, ‘I’m covered! I have the advanced directive. I’m good to go,’ but states don’t give the heads up.”
A Shocking Silence
These laws are often so obscure that even practicing health care providers are often unaware of the state-specific restrictions. Dr. Jennifer Lincoln, an OB-GYN and hospitalist practicing in Portland, Oregon, first sounded the alarm about the discrepancies on her Substack after initially writing an educational post on the importance of advance directive documents in the aftermath of Smith’s story.
“I am an author and educator on social media and am very active in creating educational content regarding reproductive rights, health care access, and abortion. I consider myself pretty well-informed when it comes to these spaces, so I was shocked when I had written on my Substack about the importance of advance directives as a way to take control in states where abortion is restricted…” Lincoln told Huffpost. “I had never heard of what are called ‘pregnancy exclusions’ before, so I looked into it, and what I found shocked me ― and that’s hard to do to an OBGYN in America in 2025.”
The sneakiness of these laws follows a familiar playbook that abortion rights advocates will recognize — the quiet, state-by-state restricting of just one small part of pregnancy, in this case, end-of-life care, is not too different from Targeted Restrictions on Abortion Providers (TRAP) Laws that steadily chipped away at reproductive health care access in various states in the decades leading up to the repeal of Roe v. Wade.
“There has been a real concerted effort among people focused on protecting the fetus at all costs to look for whatever types of law are possible for the state to step in and champion — often at the expense of the mother — the rights of a bunch of cells,” Lee adds. “It’s always been an effort that’s been in the background, but because of the comfort of Roe, I think people took their eyes off the ball.”
While that is the prevailing reproductive health care narrative of the last 30 or so years, the experts we spoke to still maintained that the ethics of these laws have disturbing implications and heartbreaking (and, given U.S. health insurance costs, expensive) outcomes for the families that survive individuals affected by them.
“What’s so sad about this is ― this is not a medical issue. The law has provided everyone the right and encouraged you to have an advanced directive. There is never a fine print notice to say, ‘Hey, if you’re female and you become pregnant, this is meaningless,’” Lee adds. “The idea that the state can spring to life and use my body in a way that I do not consent to and do not want in some states, regardless of whether the fetus is viable? The harm that is inflicted on the family to use a woman’s body that way.”
Lee notes that there are major racial disparities in these situations, too, that can’t be overlooked: “Things like this fall disproportionately on Black women, who are more likely to receive inadequate care and to have their medical wishes overridden, in terms of legislation.”
“The idea that the state can spring to life and use my body in a way that I do not consent to and do not want in some states, regardless of whether the fetus is viable? The harm that is inflicted on the family to use a woman’s body that way.”
- Stacey B. Lee, JD, Johns Hopkins Bloomberg School of Public Health
Ultimately, it comes back to a prevailing narrative that reproductive health care experts and advocates have been urging more Americans to consider: These sort of restrictive laws, pieced together by people with little knowledge of medicine or pregnant bodies cannot fairly legislate around the unique medical needs of pregnant people and the health care providers who care for them.
“All of us who care about bodily autonomy are broken records when we say this: pregnancy is too complicated to legislate,” Lincoln said. “These restrictions take away the freedoms of the family to carry out the wishes of their dying relative. They tie the hands of the doctors who took an oath to put the patient first. It adds an extra layer of trauma and horror to an already traumatic situation. It is inhumane and unethical.”
Unsurprisingly, Lee notes that there isn’t a comparable law on the books restricting or overriding the advance directives of people who can’t get pregnant.
“So let’s say for the sake of saying that my spouse is incapacitated and he has made it really clear that ‘I don’t want to have any more kids,’ but I extract his sperm anyway,” Lee said. “There’s no knowledge I have of [laws] that contradict a male’s right to not go forward with the creation of life.”
What They Don’t Cover In Medical School
Unsurprisingly, these specific nuances of end-of-life care aren’t covered in medical schools — at least not to the extent that modern physicians in a post-Dobbs v. Jackson world might need.
“Something like this? I don’t think that your average provider is aware of this. I don’t think this is part of your medical school education,” Lee said. “I think that most physicians believe in following the advance directives.”
And Lincoln outright acknowledges that these nuances were not discussed in her training.
“I never learned about this aspect of end-of-life care in medical school or in my residency training, which was why I initially was so embarrassed when my follower messaged me,” Lincoln said. “I thought I had missed something everyone else knew, but then when I shared this update in another Substack, I had dozens of responses from other doctors, lawyers, ethics workers and more who were equally in the dark. At the end of the day, I think the fact that so few people in these fields know about pregnancy exclusions is maybe the scariest part of all. The fact that it’s flying under the radar in a time when we know fetal personhood laws are only gaining traction is chilling.”
This highlights a broader issue: state legislations impose an additional burden on health care providers who are already striving to support their patients.
As Lee notes, the ethical issues providers face when it comes to end-of-life care aren’t dissimilar to the ethical issues providers now face providing abortion care: It puts them in a vulnerable place of really having to consider whether their state will come after them for providing necessary, compassionate care to their patient.
“The issues of pregnancy and when you can intervene in a pregnancy, especially in states where an abortion is not legal, [have doctors considering] ‘how do you thread that needle to avoid a potential lawsuit?’” Lee said. “In terms of ethics, it’s less of an immediate decision [in end-of-life care situations], but the lack of urgency doesn’t lessen the ethical issues.”
What You Can Do To Protect Yourself And Your People
Regretfully, as we’ve seen throughout the post-Dobbs landscape, there is no silver bullet to getting around reproductive health care restrictions that weren’t written with pregnancy (the condition) in mind. But Lee and Lincoln did have some solid advice for how to best arm yourself with knowledge and set yourself up for the best possible odds of winning the fight over body autonomy in a situation where you’re incapacitated.
- Know the laws of your state. Take a look at the map and familiarize yourself with the specific laws in your area. “I want pregnant people to be fully informed of what the laws are in their state so there are no surprises if a tragedy happens,” Lincoln said. “I still recommend they have an advance directive and discuss it with their families and their health care team, even if they are in a state with hostile pregnancy exclusion laws.”
- Be prepared to leave if that is the right decision for you. ”If you think you could be having a complicated pregnancy, consider getting the hell out of the states that throw your directive out,” Lee said.
- Add a pregnancy-specific clause to your advance directive. Just because your state might not offer the fine print or the opportunity for you to speak to pregnancy-specific issues, you can still make the move yourself to be explicit about your desires in these scenarios.
- Double down, document and be explicit. Lee suggests going as far as making a video where you explicitly state that you are competently expressing your wishes for what should and shouldn’t happen if you are in one of these dire medical situations. Write a Microsoft Word document and share it with your people as well — make sure it is widely known where you stand on this. “I’d have a separate pregnancy addendum and a plain language document with my philosophy on pregnancy and life support: ‘I want to retain my bodily autonomy and my dignity and this is not what I want,’” Lee added. “I’d talk loud and long to my loved ones.”
- Have a trusted health care proxy. Lee recommends that you also have a trusted health care proxy (who you should ensure has access to your medical records well in advance) on deck, prepared to advocate for you and use all the documentation you already have to your advantage.
- Be aware of the helpers. Organizations like If/When/How (a group of lawyers working for reproductive justice) are great resources to know “if a pregnant person or family has questions or is having issues with advance directives being followed,” Lincoln said. They also have a helpline number (844-868-2812) to assist with all kinds of reproductive health care legal dilemmas.
Beyond getting your own individual protections and resources buttoned up, there’s work to be done from an advocacy standpoint, too — and there’s work already being done that’s really promising.
“I also want to provide a glimmer of hope that organizations and people are fighting back against these exclusions...in Washington, the governor signed a law that removes pregnancy exclusions from end-of-life care,” Lincoln said. “Similar work was done by If/When/How in Idaho in 2022.”
Lee adds that people concerned about this issue can and should contact their individual states and state representatives to “push for transparency in advance directive restrictions” and encourage legislation that upholds a person’s advance directive regardless of their pregnancy status.
In your own communities, Lincoln recommends raising the alarm and speaking with others in the reproductive health care and legal spaces around you: “Tell your OB-GYN or midwives, I bet they have no idea this is happening, and they can use their positions of power to advocate for change. Contact your representatives (yes, it works!) and tell them you want them to prioritize removing these exclusions. Educate others. It all helps.”