25 décembre 2006

When faith and medicine collide

By Michael Conlon

CHICAGO (Reuters) - Any nurse can walk into a bad situation. The one Luanne Linnard-Palmer can't forget came as she readied a little boy for a blood transfusion only to be told by his mother "You know you're damning his soul to hell!"

The child's mother was a Jehovah's Witness, a faith that rejects blood transfusions. Her son had sickle cell anemia and had become extremely weak.

"It blew me away," Linnard-Palmer recalls years later. "I worried not only about my own reaction but what was going to happen to this child with a lifelong disease."

The incident planted the seeds for a newly published book by the California nurse, "When Parents Say No: Religious and Cultural Influences on Pediatric Healthcare Treatment," published by Sigma Theta Tau International.

In the case that was seminal to the book, doctors went to court and got a four-hour guardianship of the child so they could carry out the transfusion against his mother's will.

The boy went home after the transfusion and the nurse who had been so affected by the case has no idea what happened to him after that.

"American families move, change jobs. There are no longitudinal studies looking at this, at what happens the next time they receive medical care," she said in an interview.

The challenges she recounts are both religious and cultural.

A 14-year-old Muslim girl with severe burns on her arm from a cooking oil spill was recovering after surgery until her parents heard the surgeon talk about a graft made with pig skin. They demanded it be removed and the girl was ultimately left with almost no function in her lower arm.

A preteen girl with a large and rapidly growing neck tumor was recommended for immediate chemotherapy but her family said they needed three to five days to pray with their Christian congregation beforehand. After officials threatened to take guardianship of the child, she was brought back for treatment after just one day.

"But the family had been willing to risk, not maybe death, but the need for immediate treatment in order to fulfill their duties spiritually," Linnard-Palmer said.

"Just recently we had an Hispanic mother who said through interpreters that in her background men were the decision makers. Her young son is a very brittle diabetic cared for by an uncle who loads him up with sugar after school," she said.

"So now he's very ill. But she said she couldn't go against the men in her house. If they're going to give him sodas and cookies they're going to do this," she added.


Linnard-Palmer, a pediatric nurse at California Pacific Medical Center in San Francisco and a professor of nursing at Dominican University of California in San Rafael, believes that more time, training and money are being spent these days on helping medical personnel deal with religious and cultural issues when it comes to caring for children.

Large urban hospitals, which tend to have more resources, have been out in front. Her hospital has an hour-long conference every two weeks to discuss such problems, she said, and when an incident occurs there is intervention by psychologists and chaplains as well as medical personnel.

While the Jehovah's Witnesses are often mentioned, Linnard-Palmer says she has found increasing complications involving fundamental Christians.

"Over and over I see people who say they won't consent until they speak to a minister or have a laying-on of hands," she added, causing delays in treatment but not necessarily refusals.

Gaining temporary guardianship through the courts is a well-established precedent, she said, though it does not happen all that often. It can have different results -- with some parents relieved that the matter has been taken out of their hands despite their wishes but others who are left in rage.

The extent of the problem in the United States has not been well documented. One often-quoted study published in the journal "Pediatrics" in 1998 found 141 deaths of children in the United States over a 20-year period who were denied medical treatment for religious reasons but whose survival rate with treatment would have exceeded 90 percent.

That study estimated that there were many more deaths which could not be documented.

Rita Swan, one of the authors of that study, told Reuters she believes the problem today is not as bad as it was in the United States 20 years ago. But she said the problem is still very difficult to measure since some religious groups are not forthcoming and deaths due to treatment delays are not always recorded with that as the cause.

"While we don't hear of as many deaths in faith-healing sects as we used to, opposition to vaccines, for example, is increasing and outbreaks of vaccine-preventable disease are increasing, some tied to religious exemptions and some not," she added.

Her group -- Children's Healthcare Is a Legal Duty (http://www.childrenshealthcare.org) -- tracks a wide range of cultural and religious problems affecting children.

Témoins de Jehovah, musulmans et chrétiens extrémistes, les ingérences des religions officielles et des sectes dans la santé de leurs adeptes sont de plus en plus nombreuses. Les enfants sont, comme d'habitude, les premières victimes des croyances irrationnelles des parents, comme celles des tenants de l'anti-vaccination.

Aucun commentaire: