Parents holding out for a miracle concerning their critically ill child causes more harm than good, researchers say. Children who are unlikely to survive do better at the end of life than when parents hold out for a miracle by extending the child’s suffering.
While religion can provide support for the families of critical ill patients, researchers found that those who hope for divine intervention is not always in the child’s best interest. Researchers say that the ethics and legality of the life of critically ill children needs re-evaluating.
In a study, conducted by a team of hospital doctors and a chaplain, involving 203 cases of parents having to make end-of-life decisions concerning their critically ill child, 183 of the cases found that the doctors and parents were in agreement with withdrawing ineffective aggressive treatment.
However, in 17 cases, the parents insisted on continuing aggressive treatment, despite doctors encouraging the parents to discontinue the treatment. Out of the 17 cases, 11 of the cases involved the religious belief that divine intervention would happen and the parents truly believed God would intervene and cure their child, if they just continued the intensive care the team of doctors declared ineffective.
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 the cases were resolved after seeking religious counsel by leaders outside the hospital and one went to court to seek legal action to discontinue intensive care. In the remaining cases, the parents and doctors could not resolve the issues, so treatment continued, despite its ineffectiveness to heal the child.
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 journal stated that it is understandable that parents would advocate for their child, but in most cases, the child was too young to subscribe to the parent’s religion and such beliefs “may be inappropriate” for the child’s condition and prognosis. In some cases, researchers and doctors stated, “useless aggressive medical treatment”, which prolongs the child’s suffering and causes unnecessary suffering “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.