We welcome a new report that recommends that more help is given to parents and professionals to prevent and resolve disagreements in the care of critically ill children. Now we want to see ministers, the NHS and others work together to implement the report’s recommendations.
The new report Disagreements in the Care of Critically Ill Children was commissioned by the UK Department of Health and Social Care and written by the Nuffield Council on Bioethics (NCoB), and was prompted by a number high-profile disagreements between parents of critically ill children and the professionals treating them. It followed a commitment under the Health and Care Act 2022 to undertake a review of the causes of these disagreements.
NCoB has found that these disagreements are almost always about how suitable and appropriate care and treatment for a child is, but that there is no single or dominant reason for why simple differences of opinion escalate. NCoB concludes that they often stem from:
- People’s pre-existing experiences and perspectives
- Questions arising directly relating to a child’s care and treatment
- Communication challenges
- Mismatched expectations
- A lack of information available to parents.
NCoB has made a total of 16 recommendations for the UK Government, NHS organisations, the Royal College of Paediatrics of Child Health (RCPCH) and others. A key call to action is for organisations to work together to produce accessible information for families about the role and potential benefits of palliative care – and to ensure that all healthcare professionals working with children are aware of and have access to it.
Responding to the report, Andy Fletcher, Chief Executive of Together for Short Lives said: “The prospect of a child’s life being shortened by a critical illness is a parent’s worst nightmare and heart breaking for all involved. Decisions about what represents the best care and support for a seriously ill child can be incredibly challenging for both parents and the professionals caring for the child and their family.
“It is vital that parents and professionals can access the information and support they need to avoid disagreements from arising – and to help resolve them more quickly, collaboratively and compassionately if they do. I welcome the report’s call to make sure that the role and potential benefits of children’s palliative care are better and more widely understood. I ask that the UK Government, NHS bodies and others work with Together for Short Lives to realise this important ambition for the benefit of critically ill children, their families and the professionals caring for them.”
“If it is in a child’s best interests, access to palliative care can help to bring about the best quality of life – and end of life care – for a critically ill child and their family.”
Together for Short Lives played an active role in the review by supporting NCoB to design interview materials and by ensuring that emotional support was available via our Helpline for any parent who needed it following their interview. We also submitted written evidence to the review.