Crisis and Faith
Nurse researcher offers advice for treating children whose parents refuse or withhold medical care because of religious beliefs

By Scott Williams
December 13, 2004

Is it more important to save a child’s life or to save a child’s soul? That’s the question that nurses and other health care professionals find themselves confronted with when parents refuse medical treatment for their children because of religious or cultural beliefs.

Luanne Linnard-Palmer, RN, EdD, CPON, professor of nursing at Dominican University of California, faced such a dilemma early in her nursing career when the mother of a 4-year-old patient with sickle cell anemia told her she had jeopardized her son’s chances of going to heaven because she had administered blood transfusions to her child.

“It set my heart off,” says Linnard-Palmer, who continues to work as a bedside nurse part time, “and I decided I needed to study this because it caused great moral stress for me and the others around me.”

The hospital had persuaded a judge to give the hospital temporary guardianship of the boy in order to give him a blood transfusion that saved his life. He eventually recovered and was released from the hospital.

Linnard-Palmer’s interest eventually led her to study the topic of parental refusal of traditional medical care during her postdoctoral studies at the University of California, San Francisco. Since 2000, she has completed two ethnographic studies, two magazine articles, and completed a book on the subject that is now in the review process.

Linnard-Palmer wrote the book, Saying No: Parents’ Experience with Limiting or Refusing Medical Treatment Based on Religious Doctrine — An Ethnographic Study, she says, to encourage health care professionals to treat families with respect, to help them prepare to handle these emotionally charged situations, and to ensure that all children receive the necessary care to prevent human suffering, disease, illness, disability, or death.

Her research has uncovered at least 31 religions in America that have within their doctrine the refusal, limiting, or delaying of medical care, relying instead on the power of prayer to heal.

Linnard-Palmer, an Episcopalian, says that although she doesn’t share the views of those who would withhold medical care from a child for religious reasons, she believes it’s important to show respect for a parent’s views and to engage in what she describes as “careful listening.”

She defines careful listening as going into a conversation without personal bias, listening until the other person is finished sharing, resisting the urge to react immediately, and engaging in what she calls “conscious contemplation.”

“I think that it’s our moral responsibility to stop and listen to what their concerns are and include their religious beliefs in Western medical care if at all possible,” she says. The message she hopes health care workers will be able to convey in these situations goes something like this: “Now that I know how you feel and what you believe, how can I let you stay here while I treat the child and respect you and your religious beliefs?”

Linnard-Palmer says situations like this often become more confrontational than they have to be and health care professionals don’t make the effort to accommodate religious beliefs and ceremonies.

She gives an example of a 12-year-old Oakland, Calif.,girl who had a cancerous growth on her neck that was growing exponentially. Her mother wanted to delay surgery and chemotherapy until after a five-day prayer vigil had been held at her church.

The physician involved said there wasn’t time for a five-day vigil and threatened to file a child abuse report if the child was not admitted to the hospital immediately. Linnard-Palmer says that although the physician was correct in not delaying the surgery by five days, efforts could have been made to bring the prayer vigil inside the hospital.

“The physicians were so adamant about her coming in immediately that they didn’t negotiate bringing the prayer vigil to her bed,” she says. She says it’s important to allow any bedside ritual that is supportive of the child, to invite clergy to the bedside, and to incorporate cultural and religious beliefs.

Linnard-Palmer says the first question she wanted to answer through her research was whether conflicts between modern medical practices and religious and cultural beliefs take place regularly in pediatric health care, or whether they are rare events that probably would never affect the average pediatric health care worker.

Her review of the literature showed that the conflicts do occur on a regular basis, and one hospital medical director in a large city says that, on average, one family per week expresses a particular preference for care or not for care based on religious or cultural beliefs. Linnard-Palmer says she wanted to learn about other health care professionals’ experiences, how quickly they take guardianship of a child, whether they negotiate with the parents, and under what circumstances they are allowed to negotiate.

She conducted 40 in-depth, ethnographic interviews with family members, health care professionals, and clergy. She studied the law to find out who can be prosecuted in such cases and on what charges. She also studied laws that exempt people from prosecution for homicide and manslaughter if a child dies as the result of withholding medical care due to religious beliefs.

In her book, Linnard-Palmer writes that religious exemptions from child abuse laws were first passed in 1974 by all 50 states because the federal government said it would not allocate federal funds to any state for child protection programs unless the states provided religious exemptions.

The states then gradually changed their exemptions to provide for a greater ability to prosecute for withholding medical care. Today, 48 states can prosecute for manslaughter when a child dies from parental refusal based on religious doctrines. Two states (Ohio and Iowa) have religious exemptions from manslaughter prosecution, while two others (Delaware and West Virginia) allow religious defenses for murder charges. Arkansas allows for religious defense against capital murder.

Linnard-Palmer also sought to understand as much as possible about children’s rights and how they developed, ethical principles and doctrines, parental autonomy, and the rights of parents in guardianship of a child in relation to those of the state. All states have some sort of provision for taking guardianship of a child from the parents, provided the child is critically ill and is being prevented from receiving medical care that would help the child.

California is the only state, however, that allows health care professionals to take temporary guardianship of a child even if the child is not critically ill. In California, the state can take over guardianship of any child experiencing “human suffering,” Linnard-Palmer says.

One reason she wrote the book, she says, is because she wanted other health care professionals to understand their legal duties in cases involving parental refusal of medical care. She says they should have a basic understanding of the laws in their state, understand when to file a child abuse report, and know whom to contact.

She says she hopes health care professionals also will learn how to take care of themselves emotionally in situations like this. It’s impossible to walk away from a case like this without experiencing a wide range of emotions. She continues to wonder about that 4-year-old boy whose mother worried that he would never make it into heaven. She wonders if the boy grew up ostracized by others of his faith because he had received a blood transfusion.

Linnard-Palmer says nurses need to debrief after such incidents and review what happened. She says they should look for ways the situation could have been handled better and encourage written policies or procedures for such situations. She also advises that counseling be available for nurses.

“I think the nurse definitely should share his or her feelings with colleagues immediately and have some sort of debriefing on the unit,” she says. “It can be absolutely overwhelming to be involved in these situations.”