Parents have a lot of leeway in deciding what medical care their child receives, but sometimes refusing care for their child tips over into neglect.
An Oregon couple who believed in faith healing were sentenced to six years in prison earlier this month for criminal charges related to the death of their newborn daughter, Ginnifer, last year.
Sarah and Travis Mitchell are members of the Followers of Christ Church, a faith-healing sect that shuns modern medicine.
They’re the fifth set of parents from the church to face criminal charges over the past nine years for failing to seek medical care for their children, according to The Washington Post.
In the United States, adults can refuse any medical care, as long as they’re competent to make their own decisions.
But it gets complicated when parents deny treatment for their children, especially when religion is involved.
“The U.S. values religious freedom to the point where states are willing to grant parents the right to refuse even life-saving medical treatments for their children if the parents can show that there’s a religious tenet that would be violated by administering the treatment,” said Efthimios Parasidis, JD, a professor of law and public health at Ohio State University in Columbus, Ohio.
The Followers of Christ Church aren’t alone in refusing medical treatments because of their beliefs. Christian Scientists and Jehovah’s Witnesses do as well, to varying degrees.
But Arthur Caplan, PhD, a bioethics professor at the NYU School of Medicine in New York City, says you can’t always know what parents will choose for their children based on religious beliefs.
“People sometimes hear that somebody’s a Jehovah’s Witness or a Christian Scientist or an Orthodox Jew, and they make assumptions about what they’re going to permit or allow,” he said. “But in my experience, that isn’t true.”
Parents who refuse medical care for themselves may allow it for their children. Some parents may decline medical care for their children for less serious conditions, but may agree to it in more extreme situations.
Caplan also cautions against judging parents too harshly for following their religious beliefs.
“You need to keep in mind that parents are trying to do what’s best for their kids,” Caplan said. “They are not doing this because they hate their kids or want to harm them.”
State law determines whether denying a child medical care because of religious reasons is legally considered neglect, sometimes known as medical neglect.
Oregon is one of a handful of states that doesn’t allow religious exemptions from criminal or civil charges for medical neglect of children.
As of last year, though, 43 states had some level of exemption for parents who withhold medical care from their children on religious grounds, according to CHILD USA.
In those states, if a parent refuses medical care for a child and opts instead for only spiritual treatment, the child won’t be considered “neglected” under the law, even if they’re harmed or die.
The laws vary among states, but nine have religious exemptions for negligent homicide, manslaughter, or capital murder: Arkansas, Idaho, Iowa, Ohio, Louisiana, Mississippi, Virginia, Washington, and West Virginia.
The number of religious-related medical neglect cases is small compared to other types of child abuse and neglect in the country, but child advocates are still concerned.
“Faith-based medical neglect is the only kind of child abuse and neglect that’s actually protected by law in many states,” said Rita Swan, co-founder of the group Children’s Healthcare Is a Legal Duty.
Swan has written a memoir, “The Last Strawberry,” about the death of her son in 1977 as a result of relying on Christian Science practitioners to heal him.
The extent of religious-related medical neglect in the United States is unknown, partly because of spotty records and many cases not being reported.
Child advocates, though, have documented 185 child deaths and stillbirths in Idahoan families with religious beliefs against medical care since Idaho enacted a faith-healing exemption in the 1970s.
“We call Idaho the worst in the nation, because it not only has very bad laws, but it has a lot of people who have religious beliefs against medical care,” Swan said.
Religion is only one of several reasons that parents may use for keeping their child from undergoing a medical treatment. Safety concerns and personal preferences also come into play.
But Caplan says that American society tends to be a “little more sympathetic” when parents refuse medical care for their children because of religious reasons. But he doesn’t really see a “huge difference” between that and refusing for other reasons.
Bette Bottoms, PhD, a professor of psychology and law and dean emerita of the Honors College at the University of Illinois at Chicago, said that “even in states where there is a religious exemption, courts still can intervene and require medical care if they believe a child is in danger of death.”
“A lot of times people don’t notice the neglect,” she added. “So the courts can’t even get involved, because they don’t know when this is happening.”
In this country, parents have a lot of leeway in determining medical care for their child. So the exact point at which refusing care tips over into medical neglect isn’t always clear.
“It’s impossible to draw a bright-line rule that’s going to derive a perfect outcome in every circumstance,” Parasidis said.
Bottoms thinks that it depends on what treatment is being refused.
“Medical neglect occurs as soon as you have a child suffering from something which we know how to treat with modern science,” she said, “but instead the parents choose to not treat at all, or to treat only with something like prayer.”
Caplan says that instead of a clear line, doctors and courts can use several criteria to decide when the state needs to intervene.
Courts may be more likely to step in if the treatment that parents are refusing for their child is well-established, such as insulin for diabetes or antibiotics for meningitis.
“You can’t have parents sacrificing their children when there are known cures available, whatever their reason,” Caplan said. “But parents get more discretion when something is not proven.”
Urgency matters, too.
Parasidis said that “if there’s some imminent threat to a child’s life, that’s a very different story than wanting to give the child the hepatitis B vaccine.”
He adds that these cases aren’t just about what the doctors and social workers say, but also what the religion says.
“In court, you see judges actually calling in the religious leaders and asking them specific questions about what in their religion speaks to medical interventions,” Parasidis said.
And then there’s age: “Let’s say a child is 17. They’re not legally mature adults, but they probably can participate in the decision. So then they begin to get some weight in what’s going on,” Caplan said.
Based on these and other criteria, the “line” starts to fall into place.
As for the religious exemption laws, not everyone agrees on them.
Swan and other child advocates continue to push for states to repeal their religious exemption laws, the way Oregon did in 2011.
“I think instead the state should have laws that indicate that all children are valued by the community,” Swan said, “and parents should be given the responsibility of providing children with the basic necessities of life, regardless of their religious beliefs.”
This includes medical care.
Parasidis admits that the current system in many states isn’t “perfect,” but he thinks it’s better than an outright ban on religious exemptions for medical care.
“The exemption laws are trying to draw a good balance,” Parasidis said. “If doctors really feel strongly about a child’s situation and the state child welfare services really feel strongly, then they can go to the court and let the court decide.”
A better approach, he suggests, would be to provide more guidance to hospitals and child welfare services on how to handle religious exemption requests.
Caplan might agree.
“I think it’s better handled within the medical profession. It’s better when pediatricians, their societies, and ethics committees take positions on this issue,” Caplan said. “I don’t see the state legislature being too useful here. They’re not very good at practicing medicine, and that’s what this is.”
Court cases and legislative options, though, aren’t the only approach.
“In my experience, child welfare services are unlikely to prosecute or to bring charges for medical neglect if they can find sort of a softer way to handle it,” Parasidis said.
Caplan says that sometimes doctors can convince parents to allow a conventional medical treatment for their child alongside prayer or alternative medicine.
And even if a court overrules the parents’ decisions, he says it’s important to maintain a good relationship with the parents.
“You still want to bring parents back in, because they’re the main caregivers,” Caplan said. “They’re going to be there for the rest of the child’s life, but the medical team will not.”