Intensive care doctors call for rapid access to courts to stop children suffering

Doctors at Great Ormond Street children’s hospital have called for rapid access to the courts where children’s lives are prolonged in a way that could amount to 'inhumane' treatment under Article 3 of the ECHR.

The doctors studied 290 deaths at the hospital’s paediatric intensive care unit over three years for The Journal of Medical Ethics. They called for “rapid default access” to the courts, similar to cases where Jehovah’s Witnesses refused consent to blood transfusions essential to keep their children alive.

Doctors Joe Brierley and Andy Petros and hospital chaplain Jim Linthicum found that in 186 of 203 cases families agreed that ‘invasive care’ to prolong the lives of their children should be withdrawn.

In the remaining 17 cases, doctors reviewed the case notes and found “a predominant theme of expression of strong religious belief influencing the family’s response to the critical illness of their child”.

Six of these cases were resolved after further discussions but 11 involved “challenging protracted discussions, largely based upon the belief of the sanctity of life as a result of the parents’ religious convictions”.

The doctors said a “proportion included Chrisitian families from the African subcontinent” but there were also followers of the Catholic, Jewish and Muslim faiths.

“In five cases, Muslim, Jewish and Roman Catholic, local resolution was ultimately achieved with the help and support of hospital and local religious leaders, who attended the hospital to support the families and discuss the children’s care with the clinical team.

“The remaining six cases underwent ethical reviews, second opinions from other trusts and numerous multidisciplinary team meetings between medical staff, the patient advocatory liaison service and the family.

“In the Christian groups who held fervent or fundamentalist views, the parents did not engage in exploration of their religious beliefs with hospital chaplains and no religious community leaders were available to attend meetings to help discuss or reconcile the differences. The parents had their own views or interpretation of their religion and were not prepared to discuss these tenets.”

The doctors said that parental beliefs were “recognised, but put to one side” when the parents were Jehovah’s witnesses and a child’s life was at risk if denied a blood transfusion.

Yet, there was no presumption that a “child in a futile condition as perceived by physicians and lay people” should have automatic referral to a process which could challenge parental decisions.

Referring to Article 3 of the ECHR, and its ban on torture, inhumane and degrading treatment, the doctors 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 or adult has been argued as inhumane.”

They went on: “There has to be a legal presumption that life has to be sustained; but ethically the sanctity of life can be balanced against the futility of inappropriate attempts to prolong it.

“The current position of undergoing internal and external medical reviews (second opinions) and ethical reviews before seeking a court order can be protracted and arguably damaging to parents, to healthcare workers looking after the child and of course most importantly to the child itself.

“Such situations should result in rapid intervention, despite clearly conflicting with religious views central to the parents’ life plan.

“Instead, usually after many weeks or months of protracted unsuccessful discussions, with both sides trying to get the other to see their point of view, a request is made to the courts for a declaration on how to proceed.

“Many are unused to or unprepared to take this route and leave the child in an unacceptable condition for fear of unfavourable publicity or costs or outcome.”

The review concluded that it was time to “reconsider current ethical and legal structures and facilitate rapid default access to the courts in such situations when the best interests of the child are compromised in expectation of the miraculous”.