Christians campaigning for greater transparency around decisions made in the care of critically ill children have expressed disappointment at the outcome of a review led by the Nuffield Council on Bioethics.
The council published its report on 'Disagreements in the care of critically ill children' on Monday.
It makes 16 recommendations aimed at improving communication between parents and the healthcare professionals responsible for their child's treatment.
Another recommendations call for more information to be provided to families, including guidance on how to communicate with their child's treating team, how to seek second opinions and raise concerns, and how to access emotional and practical support.
"Although only a small percentage of disagreements end up in court, recent high-profile cases have shown that when disagreements become prolonged and play out in our legal system and in the public eye, they can be distressing and have long lasting implications for everyone involved," the report reads.
However, the report does not include any recommendations around closed court hearings and reporting restrictions that prevent patients' identities from being revealed and families being able to openly discuss their case.
Christian Concern, in its submission to the review, made a number of recommendations. These included a call for open court hearings in cases involving the withdrawal of life-sustaining treatment, and for parents to be allowed to access an alternative provider of treatment at no extra cost to the NHS.
Additionally, Christian Concern recommended that in disputes over care, parents should have an automatic right to instruct their own medical experts and treating clinicians should be obliged to share information with them.
It further suggested that Clinical Ethics Committees be brought in to mediate prior to any application to the courts to end life-sustaining treatment, and that families be given sufficient notice of court proceedings in order to prepare their response and any evidence that may be required.
The issue of transparency came to the fore earlier this month when a teenager vowed to challenge the decision of her doctors to end life-preserving treatment. Strict reporting restrictions imposed by the court meant that the teenager could only be identified in public as ST. This has continued to be the case despite her tragic death last week. The devout Christian family were supported in their case by the Christian Legal Centre, a partner organisation of Christian Concern.
Andrea Williams, Chief Executive of Christian Concern, said she would continue to push for open courts.
"This report was an opportunity to make a difference in one of the most pressing and important public policy debates of our times and to protect and safeguard life. Instead it is a whitewash report," she said.
"It is, therefore, all the more disappointing that the council has failed to grapple with the most complex issues in the debate.
"We have lived through many critical care cases and brought our experience together with many of the parents to various meetings with the Nuffield Council. We are sad that we and the parents have been ignored."
She continued, "The widespread media coverage of these cases shows the extent of public sympathy for the families in these difficult cases. It is time for the government to act to ensure that life is wholly safeguarded.
"Justice is done in the open, not behind closed doors. Sadly, the Nuffield Council has missed an important opportunity to put this right."
