Miracle vs. medicine: When faith puts care at risk

Salem, Ore., pediatrician James Lace, MD, will never forget the severely asthmatic patient who could scarcely speak a sentence without gasping for air.

The 15-year-old girl had endured asthma for years, but her parents refused treatment for her because their religion forbids medical intervention. They believe that only prayer should be used to heal.

For weeks, Dr. Lace met with the parents at his office and in their home, trying to persuade them to accept medical care. He discussed Bible passages about healing and even prayed with them.

"I wanted to show them I'm not opposed to their beliefs. ... I wanted to show them that [doctors] are not negating the power of prayer; we're part of that," he said.

After social workers threatened to place the girl in foster care, the parents relented. Their daughter was prescribed medication, and she gained weight and developed new lung tissue. But once she turned 18, she stopped treatment.

"She wrote me a letter saying, 'I'm free now. I don't have to see you anymore,' " Dr. Lace said. She wrote, "God wants me to suffer."

In doctors' offices across the country, physicians confront similar struggles with families who choose religious beliefs over medical advice. When faced with this scenario, doctors must balance the practical obligations of providing medical care while adhering to laws that require them to report cases of possible child neglect.

These tensions have spilled into the courts, where criminal cases have pitted faith healing against medical intervention. Recent rulings show that the legal system is taking medical-based neglect more seriously than before.

For example, Timothy and Rebecca Wyland of Oregon City, Ore., were convicted in June of felony criminal mistreatment for allowing their infant daughter to develop a baseball-sized growth above her eye that threatened her vision. The parents belong to Followers of Christ Church, which prays for healing instead of seeking medical attention.

Kay Lynn Burdette of Auburn, Ala., pleaded guilty to criminal negligent homicide in June for the 2008 death of her 17-year-old son. The teen died from pneumonia after experiencing flu-like symptoms for weeks. Burdette, who belongs to a small rural church, prayed with her son instead of seeking medical treatment.

Such cases have prompted lawmakers, doctors and anti-abuse advocates to seek changes in laws that provide religious protections for parents. At least 30 states allow some form of religious immunity for parents when children are harmed because of a lack of medical care.

In 1999, Dr. Lace, legislative committee chair for the Oregon Medical Assn., helped overturn five of nine Oregon statutes related to religious protections for parents. In June, he and others lobbied legislators, leading to the repeal of the last four statutes. Religious beliefs are no longer a defense in Oregon for harm to a child in any crime.

"We're not going after religion or people's rights to go to church. We're going after neglect," he said. These children "are dying of simple diseases that you can treat."

When child neglect is suspected

At least 10 child deaths related to faith-based medical neglect come to light each year, but the number of children who die or are harmed is probably much higher, said Rita Swan, president of Iowa-based Children's Healthcare Is a Legal Duty (CHILD). The nonprofit advocates stricter penalties for parents who refuse medical care for children.

These deaths frequently are classified as "natural" or are not investigated as crimes, she said. Countless children also are subjected to lifelong health problems because of inadequate medical treatment, she said.

In 1998, CHILD and Rhode Island-based pediatrician Seth Asser, MD, published a benchmark study in Pediatrics. It showed that of 140 child deaths in the U.S. where medical treatment was withheld, 90% of the children would have survived with routine health care.

"These kids take days or sometimes weeks to die or live with disabilities for their whole lives," said Dr. Asser, who in 2004 helped successfully repeal a Rhode Island law that gave parents religious exemptions. "These are babies who in some cases are literally tortured to death."

Religious groups have different reasons for opposing medical care.

Jehovah's Witnesses believe blood transfusions are prohibited under certain biblical passages, said Zenon Bodnaruk, associate director of clinical affairs for Hospital Information Services for Jehovah's Witnesses. Instead of transfusions, believers ask physicians to utilize strategies for managing hemorrhage and anemia without blood. They accept all other forms of medical treatment, and church membership includes physicians and other health professionals.

The Christian Science Church believes that members should rely solely on spirituality instead of medical treatment. Christian Scientists provide "practitioners" to give spiritual treatment "through prayer that results in healing," according to the church's website. A church spokesman declined to comment for this article.

In general, people who believe in divine healing often separate structural problems from tissue-related ailments, said J. Gordon Melton, PhD, a professor at Baylor University's Institute for Studies in Religion in Texas and director of the Institute for the Study of American Religion in California. That means it's acceptable to get care for broken bones, but not diseases.

In each state, doctors are required to report to authorities any suspected case of mistreatment of children.

The circumstances under which doctors must make reports vary by state, according to the U.S. Dept. of Health and Human Services. Typically, reporting is required if doctors suspect child abuse or neglect, or have knowledge of conditions that could lead to harm.

But there are gray areas concerning medical conditions that are not life-threatening or when doctors are uncertain about possible abuse, said C. Ronald Koons, a clinical professor of ethics in the Dept. of Medicine at the University of California, Irvine.

"We're caught in a moral dilemma," he said. "Are we going to wrongly accuse someone and maybe cause more troubles if we bring this up? We obviously prefer not to cause more distress within a family."

Dr. Asser said physicians sometimes wrongly assume there is nothing they can do if a family rejects treatment, especially in the early stages of an illness that is not life-threatening.

"Child neglect is the most commonly fatal form of child abuse," he said. "They should consider the illness and all the potentially fatal ramifications. If initial efforts to go along with a reasonable treatment plan fail, they need to report" the issue to authorities.

The American Academy of Pediatrics says physicians who believe parental religious convictions are interfering with medical care should request court authorization to override parental authority. The AAP and the American Medical Association support the ongoing repeals of religious exemptions from state child abuse laws.

Oregon City, Ore., pediatrician Jo Anne Nielsen, MD, has encountered parents who refuse medical treatment based on religious beliefs. She said their actions often are misperceived by the public.

"They love their children. They would love to have their children survive, but they believe in healing with prayer," she said. "When you get to know these people, they're not weird. They just have a strong faith that most of us don't understand."

Dr. Nielsen, who treated the Wylands' daughter, has cared for other Followers of Christ members. Some children are ordered to receive care, and other parents bring them in against church tenets.

"My purpose is to be available to these families and to get these kids checked," she said. "I'm trying to provide them a place to come. I tell them, 'Keep praying for your child, and we'll give them medicine.' "

Understanding parents' point of view

Doctors should not make rash decisions when faced with a family refusing medical care, despite how they feel about the family's religious beliefs, Dr. Koons said. Physicians should listen to patients and try to understand their point of view.

"People see a wrong, and from their perspective, that wrong is so egregious they say, 'We must do something.' But it's better to try to understand the person who you think is wrong," he said. "If you can [approach them] in a humanistic way, and with compassion, compromise is much more likely."

Dr. Koons had an adult patient with Hodgkin's disease who wanted to rely on prayer rather than cancer treatment. He tried to persuade the patient to get treatment, but the patient refused.

Dr. Koons asked the patient to follow up with him every few months for the next four years. The patient agreed. That allowed the doctor to monitor the patient's progress and maintain a positive relationship. "It's better for us to be willing to accept patients' decisions, as long as we've given them all the information and offer to be available," he said.

Finding common ground with parents about religious views helps develop a compatible care plan, said pediatrician Thomas Valvano, MD, medical director of the Suspected Child Abuse and Neglect Program at Oregon Health & Science University. He testified for the state in the Wyland trial.

If a family feels strongly about praying for a child at the hospital or bringing a religious figure to the child's bedside, doctors should be respectful, he said. They should be open to a family's beliefs and know what treatments the family is willing to accept.

But, above all, the child's care comes first.

"It's always a challenge when you make medical recommendations that families, for whatever reason, don't want to follow. But we have to guard against our frustrations keeping us from working with the family," he said. "On the same token, we can't defer to the point where the child isn't receiving the medical care he or she needs."

Dr. Lace, the Oregon pediatrician, still wonders what happened to the teenager he treated for asthma. He hopes the years of medication healed her lungs and that she is leading a better life.

"I just wanted to have her to enjoy being healthier," he said. "At the end of the day, when I put my head on the pillow, I ask myself, 'Did I help someone today?' That's why I'm a doctor, and that's what you have to come back to."