Independent review of disagreements in the care of critically ill children – the report and recommendations

The Nuffield Council on Bioethics has today, 18 September 2023, published the report of the review it was commissioned in December 2022 to carry out the Secretary of State for Health and Social Care, following a Government commitment in the Health and Care Act 2022. We have now laid this review before Parliament and are encouraging the Government to act on our recommendations.

As the Council says:

“We have identified some common factors in the causes of disagreements, and aggravators of existing ones. These include communication issues, mismatched expectations and a lack of information available to parents. Our review contains 16 recommendations across a number of areas, to a range of groups and organisations, which, if taken together, we believe will help improve the experience families and healthcare professionals have of navigating disagreements.  

We are calling for a Government taskforce to drive forward our all of our recommendations, as meaningful change will only happen if the steps towards change are taken together, and oversight of this is crucial for ensuring effective implementation.   Amongst our recommendations is a call for more information to be provided to families such as 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.  

We also recommend NHS trusts provide more emotional support for healthcare professionals who are involved in disagreements with parents, and training in relationship-building to help improve communication between healthcare professionals and families.  

We heard that parents receiving mixed messages about their child’s prognosis, care and treatment is a common contributory factor to disagreements arising, Accordingly, we suggest that guidance is developed for healthcare teams on how to seek information from children and parents about their communication needs, ensuring all team members are aware of these and are providing consistent messaging about their child’s care and treatment, particularly where the child is under the care of a multi-disciplinary team. ” 

From a purely legal perspective, it is of interest to note that the report does not recommend a change in the ‘best interests’ test applied by the courts in cases concerning children.  It is also perhaps important to note two developments that the report was not able to incorporate in what is otherwise an extremely comprehensive review of a very complicated area.  The first is the coming into force of the removal of means-testing for parents involved in cases concerning life-sustaining treatment of children, with effect from 3 August 2023 (rather earlier than the report authors had fearer).  The second is that the Supreme Court have agreed to hear the appeal by the Trusts involved in the Abbasi and Haastrup cases in relation to reporting restrictions relating to medical professionals, an issue identified as being one of concern to professionals in the report.

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