Leave dying children in peace, parents urged after research hits out at futile care on religious grounds

Parents hoping for a “miraculous intervention” prompted by religious beliefs are leading to very sick children being subjected to futile care and needless suffering, a new study suggests.

The authors of the report, including children’s intensive care doctors and a hospital chaplain, 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.

However, they said they have become concerned that deeply held beliefs are leading parents to insist on the continuation of aggressive treatment that ultimately is not in the best interests of the child. They said it is time to review the current ethics and legality of such cases.

They reviewed 203 cases involving “end of life” decisions over a three-year period. In 186 cases, agreement was reached between parents and healthcare professionals about withdrawing aggressive, but ultimately futile, treatment.

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 their very sick child.

In these cases, parents had insisted on continuing full active medical treatment, while doctors had advocated withdrawing or withholding further intensive care on the basis of overwhelming medical evidence. These cases were consistent with guidance from the Royal College of Paediatrics and Child Health.

Eleven of these cases 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.

Five of the 11 cases were resolved after meeting with relevant religious leaders outside the hospital, and intensive care was withdrawn in one further case after a High Court order.

But five cases were not resolved, so intensive care was continued. Four of these children eventually died, and one survived, but with profound neurological disability.

The researchers 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 appropriate.

They cited Article 3 of the Human Rights Act, which aims to ensure 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.”

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.