14/08/2012 06:50 BST

Religious Parents Hoping For 'Miracle Cure' Are Prolonging Sick Child's Suffering, Study Finds

"Deeply religious" parents hoping for a miracle cure for their sick children are causing "needless suffering" by prolonging aggressive medical treatment, Great Ormond Street doctors have argued.

A piece in the Journal of Medical Ethics, authored by two children's intensive care doctors, found parents hoping for a divine intervention can mean very sick children being subjected to futile care and needless suffering.

Dr Joe Brierley, Dr Andy Petros and the hospital’s main chaplain, the Rev Jim Linthicum argue that keeping a child on aggressive treatment or life support is a violation of the Human Rights Act.

A study has found parents often hope for a 'miracle cure' for their terminally sick children, and prolong their treatment

The co-authors wrote: "Spending a lifetime attached to a mechanical ventilator, having every bodily function supervised and sanitised by a carer or relative, leaving no dignity or privacy to the child and then adult, has been argued as inhumane.

"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 emphasise that religious beliefs provide vital support to many parents whose children are seriously ill, as well as to the staff who care for them.

The study reviewed 203 cases, where parents were given the choice to end treatment for very sick children and allow them to die.

In 186 cases, parents agreed to withdrew aggressive, but ultimately futile treatment.

But in 17 cases, parents and medical staff failed to resolve any question of ending treatment, as parents insisted on continuing harsh treatments, despite medical evidence that the treatment would not save their child's life.

Of these, 65% said it was their religious belief which mean they should not pull their child out of intensive care, because of an imminent "miracle cure" and complete recovery via divine intervention.

The authors said it was "particularly troublesome" to resolve the dilemma when "the ‘religious’ language of families has no relevant grounding in the teachings of their own faith."

"Furthermore, for some religions it is believed that the suffering we are arguing to avoid is something that brings the truly faithful closer to God.

Parents used 'unorthodox' interpretations of religion to justify prolonging treatment for their children

Parents came from different religious backgrounds, fundamentalist Christians, Muslims, Jews and Roman Catholics.

The study found five of the 11 cases are resolved after meetings with religious leaders, but one case was referred to the High Court.

But five cases were not resolved, so intensive care was continued.

Four of these children eventually died; one survived with profound neurological disability.

Of the five cases that were never resolved, the study said: "Christian fundamentalist churches with African evangelical origins features most frequently, though other religions also featured."

"All these families were explicit in their expectation of a 'miraculous cure' for their child, and as such, all felt that medical scientific information was of limited use.

"Although ongoing daily dialog continued between the family and the teams, there was no change in the family's view that aggressive support must always be continued, waiting for God to intervene."

The report did stress that parental reluctance to accept the imminent death of their child was "completely understandable as [they] are defenders of their children's rights, and indeed life. [But] we found unorthodox interpretations of religious teaching occurred in a number of cases.

"However, the use of religious teachings to perpetuate a situation that appears futile and which may result in distress to the child needs to be questioned."

The JME's editor Professor Julian Savulescu said: "Treatment limitation decisions are best made, not in the alleged interests of patients, but on distributive justice grounds."

"Faced with the choice between providing an intensive care bed to a [severely brain damaged] child and one who has been at school and was hit by a cricket ball and will return to normal life, we should provide the bed to the child hit by the cricket ball.

Responding to the study, Dr Steve Clarke, of the Institute for Science and Ethics, said doctors should engage with devout parents on their own terms.

He said: "Devout parents, who are hoping for a miracle, may be able to be persuaded, by the lights of their own personal... religious beliefs, that waiting indefinite periods of time for a miracle to occur while a child is suffering, and while scarce medical equipment is being denied to other children, is not the right thing to do."

But Charles Foster, of the University of Oxford, said the religious focus of the argument was irrelevant. "The legal and ethical orthodoxy is that no beliefs, religious or secular, should be allowed to stonewall the best interests of the child."

He added that religious views should be taken into account by medical staff.

"They seem to think that because we are becoming an increasingly 'secular society’ there is some sort of democratically ordained mandate to impose secular values on everyone."