Terminally ill children subjected to needless suffering and futile treatment by parents hoping for divine intervention, study claimsReport studied 203 cases which involved 'end-of-life' decisionsIn 11, parents expressed refused to stop intensive care because of their religious beliefsThey expected a complete cure even after doctors said there was no hope of survival
07:29 GMT, 14 August 2012
Needless suffering: Terminally ill children are being subjected to futile treatments by parents who hope for a 'miraculous intervention' prompted by their strong religious beliefs, a study suggests (file picture posed by model)
Terminally ill children are being subjected to needless suffering by parents who hold out hope for a 'miraculous intervention' because of their deeply held religious beliefs, a new study suggests.
Concerns have been raised that parents who trust in divine intervention despite medical advice that there is no chance of survival are putting their children through aggressive and futile treatments.
The authors of the report, including children's intensive care doctors and a hospital chaplain, emphasise that religious beliefs provide vital support to patients, parents and the staff who care for them.
But they say it is time to review the current ethics and legality of cases where the methods are counter-productive.
They base their conclusions on a review of 203 cases which involved 'end of life' decisions over a three-year period.
In 186 of these, agreement was reached between the parents and healthcare professionals about withdrawing aggressive, but ultimately futile, treatment.
However, in the remaining 17 cases extended discussions with the medical team and local support had failed to resolve differences of opinion with the parents over the best way to continue to care for the very sick child in question.
The parents had insisted on continuing full active medical treatment, while doctors had advocated withdrawing or withholding further intensive care on the basis of the overwhelming medical evidence.
The cases in which withdrawal or withholding of intensive care was considered to be in the child’s best interests were consistent with the Royal College of Paediatrics and Child Health guidance.
Eleven of these cases (65 per cent) involved directly expressed religious claims that intensive care should not be stopped because of the expectation of divine intervention and a complete cure, together with the conviction that the opinion of the medical team was overly pessimistic and wrong.
Various different faiths were represented among the parents, including Christian fundamentalism, Islam, Judaism, and Roman Catholicism.
Agonising choices: In 11 cases, parents had insisted on continuing full active medical treatment, while doctors had advocated withdrawing or withholding further intensive care (file picture posed by models)
Five of the 11 cases were resolved after meeting with the relevant religious leaders outside the hospital and intensive care was withdrawn in a further case after a High Court order.
But five cases were not resolved, so intensive care was continued. Four of these children eventually died; one survived with profound neurological disability.
Six of the 17 cases in which religious belief was not a cited factor, were all resolved without further recourse to legal, ethical, or socio-religious support. Intensive care was withdrawn in all these children, five of whom died and one of whom survived, but with profound neurological disability.
The researchers emphasise parental reluctance to allow treatment to be withdrawn is 'completely understandable as [they] are defenders of their children’s rights, and indeed life.'
However, they argue that when children are too young to be able to actively subscribe to their parents’ religious beliefs, a default position in which parental religion is not the determining factor might be more appropriate.
Moral dilemmas: Five cases analysed in the study were resolved after meeting with the relevant religious leaders outside the hospital, while intensive care was withdrawn in a further case after an order by the High Court (above)
They cite Article 3 of the Human Rights Act, which aims to ensure that no one is subjected to torture or inhumane or degrading treatment or punishment.
The authors said: '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.'
And they conclude: '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 research was published in the Journal of Medical Ethics.
The journal’s editor, Professor Julian Savulescu, said: 'Treatment limitation decisions are best made, not in the alleged interests of patients, but on distributive justice grounds.'
He argued in a publicly funded system with limited resources, these should be given to those whose lives could be saved rather than to those who are very unlikely to survive.
Prof Savulescu added: '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.'