Kelly Sher, 31, didn't have an advance directive before she had her son, Fletcher, 6 months ago.
Last week a Texas judge ordered that a pregnant but brain dead woman be taken off life support, ending an exhausting battle between John Peter Smith Hospital and her family.
Many believe the statute that disregards pregnant women’s wishes not to be kept on life support is exclusive to Texas, but the nightmare of Marlise Muñoz’s family could happen in many states – including Illinois.
The Illinois and Texas statutes are similar, said Nadia Sawicki, assistant professor at the Beazley Institute for Health Law and Policy at Loyola University Chicago School of Law. Both involve advance directives, which are legal documents that spell out a person’s wishes for end-of-life treatment.
“The Illinois statute says basically the advance directive of a woman who is pregnant shall be given no force or effect if, according to the attending physician, the fetus could develop to live birth,” Sawicki said.
The Illinois Department of Public Health website has a page dedicated to advance directives, and includes a statement of Illinois law on this issue.
“Even if you sign a living will, food and water cannot be withdrawn if it would be the only cause of death,” the website states. “Also, if you are pregnant and your health-care professional thinks you could have a live birth, your living will cannot go into effect.”
Illinois’ statute has a “viability provision,” meaning a doctor must determine the fetus can make it to a live birth. Texas has no such statute.
The struggle in the Texas case was whether Muñoz should be viewed as a patient or pronounced dead. Ultimately, the court ruled that she was brain dead and, therefore, legally dead.
“These provisions for advance directives are intended to kick in when a patient is in a persistent vegetative state, or terminally ill or a whole host of other conditions, but they presume that the patient is alive,” Sawicki said.
Sawicki said people don’t always know that brain death isn’t a separate thing from death.
“All of the reports referred to her as brain dead, which is technically true; her brain is dead, but in using that language I feel like the media reports have helped sort of misconstrue people’s understanding of what death really is,” Sawicki said. “Brain death really is death.”
People nationwide might consider this case a distant nightmare, but many state statutes could land a family in the same situation. In Illinois the law is clear.
“If you’re just looking at what the text of the statute authorizes, it seems to suggest that if there is a physician that determines the fetus is viable, life sustaining treatment could continue,” Sawicki said.
In Illinois, Sawicki said, families trapped in this situation would have to turn to court, just like Muñoz’s family.
Kelly Sher, 31 and a first-time mom, said she was unaware of the Illinois law, but she followed the Texas case closely.
“I felt bad for the husband. I think it’s a terrible spot for him…I mean he’s losing his wife and also the child,” Sher said. “I think it’s really tough that the hospital forced him to keep her alive for so long. If the baby wasn’t going to be okay, I don’t know why they would make her stay.”
When she was pregnant with her now 6-month-old son, Fletcher, she didn’t know the law or have an advance directive. But now, Sher said she would consider getting one if she has another child.
“My wishes have always been: I don’t want to live on life support, but if I was pregnant, if it was far enough along that the baby could be delivered, I would definitely want to have the healthy baby and let the baby live,” Sher said. In Muñoz’s case, the fetus had several abnormalities including deformation of its lower extremities, fluid in its brain and a possible heart problem.
Kelly Volin, 26, is pregnant with her first child and is due in late February. She, too, followed the Texas case and said she wouldn’t want to be kept on life support in that situation.
“I think it depends on the age of the child – if it’s going to be a viable fetus,” Volin said. “In the second trimester or later, I would say keep it on life support, but since it was so early in the pregnancy I don’t agree with it.”
Volin said she and her husband haven’t discussed an advance directive but now she’s considering it.
Jessica Luther, a journalist and reproductive rights activist in Texas, has an advance directive but she said she is frustrated to learn that pregnancy would override her wishes. The same applies for Illinois.
Luther said she is upset by “the stripping away of the humanity of pregnant people that these laws create. We all horrifically got to see how that played out in this case. They literally didn’t care about the wishes of this woman or her family.”
These laws, Luther said, ultimately aim to make the rights of the fetus more important than the rights of the woman carrying the fetus.
“It’s a really important cost to the Muñoz family that this is what it’s taken for people to really see how far these laws against bodily autonomy, especially for women, how far that they actually go,” Luther said.