The Nuffield Council on Bioethics’ report into ‘Disagreements in the care of critically ill children’, published today, has failed to engage with key issues that it was informed about during the review process.
Most surprisingly, the report completely fails to address the issue of open courts which has been highlighted by the recent case of ST.
The parents of ST, who sadly died last week, are still bound by a draconian ‘transparency order’ which prevents them from discussing what happened, even with close relatives, for fear of contempt of court and possible imprisonment.
Christian Concern’s response to the call for evidence from the Nuffield Council highlighted the issue of open justice and recommended that in all cases involving withdrawal of life-sustaining treatment there should be a presumption that they should take place in open court.
The Nuffield Council appears to have entirely ignored this recommendation and fails to engage at all with this important issue.
Christian Concern also recommended that parents should have the right to access an alternative provider of treatment or care at no extra cost to the NHS. This has been a real and contested issue in many of the most recent end of life cases, including Archie Battersbee. The Nuffield Council has failed to engage with this issue at all in the report.
The report also notably fails to discuss or acknowledge the issue of parents who are refused the right to instruct independent medical experts when cases get to court.
Christian Concern has proposed that any family in situations where there is a dispute over care should have an automatic right to instruct its own experts and for the treating clinicians to share information with them. The Nuffield Council has ignored this important issue which hinders justice and the ability to test the medical evidence in the courts.
Christian Concern also recommended that the UN Convention on the Rights of Persons with Disabilities should be incorporated into law. In the case of Archie Battersbee, the Court of Appeal refused to comply with interim measures granted by the UN Convention and refused to give the UN Committee any time to consider the parents’ complaint under the Convention. The UN Committee is now considering a complaint about this.
The report also failed to engage on this important issue as to whether the convention should be incorporated into law.
Christian Concern further recommended that there should be mandatory consideration and approval by the Clinical Ethics Committee before any court application for removal of life-sustaining treatment. The Nuffield Council report acknowledges that the use of Clinical Ethics Committees varies widely between hospital trusts, but fails to recommend mandatory consideration by such committees and gives no reason as to why.
Christian Concern further suggested that families should be given adequate notice of court proceedings so that they have time to respond and prepare evidence. While the Nuffield Council report recommends that families are notified within three days of a decision to initiate court proceedings, this will not help the families respond to legal arguments.
Christian Concern recommended that any family be given at least 14 days to acknowledge service of proceedings, and 28 days to provide a detailed response. The report has failed to discuss what notice should be given for families to respond to the service of proceedings.
Andrea Williams, Chief Executive of Christian Concern said:
“Every stakeholder involved in critical care has been waiting for the Nuffield Council report. 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.
“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.
“This was a moment for the Nuffield Council to demonstrate that they had listened to the grieving families affected by disagreements over the care of their critically ill children. The families have been let down by this inadequate report.
“We note that the Director of the Nuffield Foundation, Danielle Hamm, was formerly Director of Compassion in Dying which campaigns for assisted suicide. Additionally, Council member, Victoria Butler-Cole, was previously chair of Compassion in Dying. Perhaps we were naïve to hope for something better and it is no surprise that the Nuffield Foundation has produced such a thin report.
“We will continue to help families in these cases and to push for open courts. We believe the system should give adequate time for families to be informed and respond properly to the legal issues, and for them to be able to instruct their own medical experts in cases where treatment options are contested.
“We will also continue to advocate for families to seek alternative treatment where it is being offered at no additional cost to the NHS. These are life and justice issues which resonate strongly with ordinary members of the public.
“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.”