Parents' Religious Beliefs Can Complicate Kids' End-of-Life Care

Hoping for a miracle might lead them to request futile treatments for their children, researchers say

TUESDAY, Aug. 14, 2012 (HealthDay News) -- Despite overwhelming medical evidence supporting the withdrawal of intensive care in extremely ill children who are unlikely to survive, parents who have deeply held religious beliefs may hold out for a miracle, a small study has found.

Although religion provides needed support for many families of critically ill patients, the investigators found hopes for divine intervention are increasingly causing children to be subjected to aggressive medical treatment that is not in their best interest. The ethics and legality of these cases should be reevaluated, the study authors suggested.

The study, conducted by a team of intensive care doctors and a hospital chaplain, involved a review of 203 cases in which parents were forced to make end-of-life decisions for their children.

The researchers found that in 186 of these cases, the children's parents and their doctors were in agreement about the withdrawal of aggressive medical care that would ultimately be ineffective.

In 17 cases, however, there was prolonged debate between the sick children's parents and their medical team over the best way to continue with their medical care. Although the children's doctors advised the withdrawal of intensive care based on overwhelming medical evidence, their parents insisted on continuing aggressive medical treatment.

Of these cases involving disagreement over the children's end-of-life decisions, 65 percent, or 11 cases, involved directly expressed religious beliefs that intensive care should not be stopped because the parents anticipated divine intervention and a cure. Among the religions represented in this group were Christian fundamentalism, Islam, Judaism, and Roman Catholicism, the researchers noted. These parents also thought the doctors were overly pessimistic and wrong.

Five of these cases were resolved after parents met with their religious leaders outside the hospital. In another case, intensive care was not withdrawn until legal action was taken to withdrawal support.

In the remaining five cases in which religious beliefs played a role in children's end-of-life decisions, resolution was not found so intensive care was continued. Four of the children eventually died. One child survived with profound neurological disability, according to the report published online Aug. 14 in the Journal of Medical Ethics.

The study authors noted that intensive care was withdrawn in all six of the 17 cases in which religion did not sway parents' decisions about their children's treatment. Five of these children died and one survived with severe brain damage.

It's "completely understandable" for parents to advocate for their children, the researchers noted in a journal news release. However, when children are too young to actively subscribe to their parents' religion, these beliefs may not be the appropriate determining factor for their treatment, study author Dr. Andy Petros, of the pediatric and neonatal intensive care unit at Great Ormond Street Hospital for Children, in London, and colleagues explained. In some cases, they stated, continuing useless aggressive medical treatment may be inhumane.

"Spending a lifetime attached to a mechanical ventilator, having every bodily function supervised and sanitized by a carer or relative, leaving no dignity or privacy to the child and then adult, has been argued as inhumane," they said in the report.

"We suggest it is time to reconsider current ethical and legal structures and facilitate rapid default access to courts in such situations when the best interests of the child are compromised in expectation of the miraculous," the authors concluded.

More information

The American Medical Association has more about faith-based medical decisions.

SOURCE: BMJ journals, news release, Aug. 13, 2012
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