A Breakdown of the Rights US Parents Have in Directing Medical Care for Their Premature Newborns

This is an IJR Red-reported analysis response to IJR’s original investigative piece, “Born Too Soon: Doctors, Parents Grapple with Life or Death Decisions in the NICU.” 

Around the world, life or death situations have raised questions about the rights parents have in directing medical care for their sick children.

The question has repeatedly come up in the United Kingdom where doctors, backed by government-run health service, have decided to cease care for sick children, despite the parents’ wishes.

While the United States mostly defers to parents when deciding whether to continue care, a case from 2012 raised questions about what parents might be able to do if their prematurely-born infant needed life-saving medical care.

IJR’s Sarah Netter caught up with Andrea Mullenmeister, who said that her son Jaxson was doing well after his premature birth in 2012. As Netter noted, doctors treating preemies face a difficult decision as to whether they should try resuscitating babies that ideally would have stayed in the womb for much longer.

The Hippocratic oath naturally implores doctors to help sick patients, but that doesn’t always happen with premature births. Dr. Martin McCaffrey, a neonatologist at the University of North Carolina, told IJR that some hospitals have refused to care for infants born before a certain threshold.

“A lot of people don’t even want to look at 22-week-old babies institutionally. There are places that will say and have sort of their own definition of viability: ‘We don’t resuscitate babies that are less than 23 weeks,'” he said.

Resuscitating those babies, he said, would allow some to survive, despite their difficult circumstances. Without the life-saving interventions, he said, infants aren’t likely to survive.

According to McCaffrey, hospitals generally refuse to provide those services because of the suffering involved and amount of resources used.

“Generally, health care providers — physicians — have been given a fair bit of leeway in determining what that viability limit is but it’s pretty variable,” he said. He noted that he wasn’t aware of law enforcement pursuing cases against hospitals on this issue.

While courts have ruled on similar situations, it didn’t appear that a national standard or precedent governed these types of cases.

In Michigan, a court decided in State v. Messenger (1994) that a father had the right to refuse treatment for his infant. A more recent case, Miller v. HCA (2003), involved parents suing their doctor for going against their wishes and using ventilation on their child Sidney who later faced severe physical and mental impairments.

The parents sued the hospital for battery and negligence, and a court ruled that doctors could resuscitate the child because the condition was unknown before birth. That ruling, however, did not mean doctors had a legal obligation to resuscitate infants.