A week after my colleague Orac posts on the conundrum of bringing religion into medicine, Michael Conlon reports on a nurse's book about how religious and cultural influences can compromise medical care:
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."
This experience led Linnard-Palmer to write the recently-released book, "When Parents Say No: Religious and Cultural Influences on Pediatric Healthcare Treatment." The solution to the Jehovah's Witness case was for the hospital to be granted a court-ordered, four-hour temporary guardianship for the transfusion to be given.
Unlike the alternative medicine approaches often discussed on this blog, religious wishes of families are far more prevalent and sometimes conflict with the course of medical care:
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.
As you might expect, studying the extent of this phenomenon is somewhat challenging but certainly worthy of attention:
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 [free full text here].
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.
I'd be interested to know that, as the medical liability industry has grown in the last 20 years, how often doctors or institutions might be held responsible in cases where parental denial of care leads to complications or death.
Dr Swan, co-author of the aforementioned study in Pediatrics, is also president of a group, Children's Healthcare Is a Legal Duty (CHILD),"a non-profit national membership organization established in 1983 to protect children from abusive religious and cultural practices, especially religion-based medical neglect." Their case reports and FAQ provide important background on the religious groups that espouse practices leading to medical neglect.
In addition, CHILD, Inc. notes that religious exemptions by some states undermine a 1944 US Supreme Court ruling that,
"The right to practice religion freely does not include liberty to expose the community or child to communicable disease, or the latter to ill health or death. . . . Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves."
Input on this issue is welcomed from those who care for pediatric patients; in fact, I should probably submit this post to the next Pediatric Grand Rounds. I also look forward to reading Linnard-Palmer's book to learn what solutions she might suggest for medical professionals.
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Thanks for this entry, very informative.
Several years ago on television, CBS's "60 Minutes" ran a story about a family that lost two!! (out of 12?) children due to eminently treatable conditions. It was especially chilling since they 1- clearly loved their kids, and 2- still thought they had done the right thing. They cited their bible's advice on what to do for someone who was ailing.
Then, a theologian was interviewed- he said "Yes, that's what the bible says. But the bible does not say 'and don't take the patient to a doctor.'"
People in the medical profession are often approving of using the law to force people to receive what they think is appropriate treatment. How many of them would still approve if the treatment were one they disapproved of, I wonder?
Related is the question of what can be done about parents who seek out potentially harmful quackery for their kids, e.g. chelation for what they call "mercury poisoning" (autism). Based on the Supreme Court passage, I would think that in these cases, where religion is really not at issue, the case for charging these parents with abuse (or at least overriding their treatment preferences) would be easy to make, if only someone in government would have the cojones to do it.
I believe that the single best thing that can be done is to educate the children in such families that medical care can be safe and effective. I grew up in Christian Science family, and we were actively taught that medical care didn't work and in fact made you sick. It took me years to overcome that conditioning, even after I left the faith.
Legally, the religious exemption from prosecution for child abuse by medical neglect needs to be removed from state laws - some 40 states have such protections for religious families, and they need to be gotten rid of. A parent's right to practice their religion does not over-ride a child's right to be treated for diabetes, or have a broken arm set.
While such legal protections exist though, you just have to do the best you can to let the kids know that medical treatment really can help, that it won't hurt them, and that it is acceptable to see an MD when you are hurt or sick. In my experience, few CS families, even my own, refuse medical care to older children (10+) who insist that they want it. It's knowing enough to insist on having it that is the hard part.
isles: In my previous post on a JCO review of pediatric cancer cases treated with alternative methods, I was surprised to learn that courts give great latitude if the therapy is administered by a licensed physician. On one hand, it permits that often-beneficial, off-label uses of drugs but it also seems to protect those docs who practice well outside of evidence-based medicine.
PennyBright: Your story is priceless and heartbreaking. I cannot imagine sharing your upbringing and I appreciate your frank comments. I agree with you re states: the exemptions make the state complicit in child abuse. Thank you for your comments.
The following website summarizes over 200 similar court cases involving Jehovah's Witness Parents who refused life-saving blood transfusions for their children:
DIVORCE, BLOOD TRANSFUSIONS, AND OTHER LEGAL ISSUES AFFECTING CHILDREN OF JEHOVAH'S WITNESSES
http://jwdivorces.bravehost.com/