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.