RCPCH responds to Nuffield Council on Bioethics review of disagreements in the care of critically ill children

The Nuffield Council on Bioethics (NCOB) has published its review of the disagreements that arise between families and healthcare teams in the care of critically ill children.
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The NCOB was commissioned by the Secretary of State for Health and Social Care to undertake a review of the causes of disagreements between parents and healthcare teams about the care of critically ill children in England, following a commitment in Health & Care Act 2022.  

The NCOB has heard from healthcare professionals and families to understand why disagreements happen, setting out themes arising from their research. The review makes recommendations based on its findings, including the ask of the Department of Health and Social Care to establish a taskforce to oversee implementation of the work to effect lasting change.  

The College will reflect on the recommendations posed by the review and work with others to see that this important area of work is progressed. There are two recommendations specifically aimed at the College: 

  1. Representative and membership organisations of healthcare professionals working with children, such as the Royal College of Paediatrics and Child Health (RCPCH) and the Royal College of Nursing (RCN) should work together to collate, publish and maintain a bank of resources (including existing education, training and examples of ‘good practice’ initiatives) relevant to relationship building and improving communication with families. 
  2. We recommend that the Royal College of Paediatrics and Child Health (RCPCH) should collaborate with families, palliative care providers and charities to produce accessible information for families about the role and potential benefits of palliative care, and work with other healthcare professional membership organisations to ensure that all healthcare professionals working with children are aware of and have access to it (Recommendation 9). 

In response to the published report, Professor Steve Turner, RCPCH Registrar, said:  

We know the number of children and young people with complex health needs is increasing. The decisions paediatricians make within their healthcare teams will always have the child and young person’s best interests at heart, but it is inevitable there will be times when disagreements arise between the family and healthcare teams. We recognise this is distressing for all parties involved and we have long noted the importance of harmonious and collaborative relationships between families and healthcare teams wherever possible.  

It is positive that this review acknowledges and is sensitive to the impact disagreements can have on everyone involved, including healthcare teams. The review makes several recommendations that collectively should help improve how future disagreements are managed. We note that the review makes specific recommendations to the College that we will now reflect on with the view to taking forward.

Carli Whittaker, President at Paediatric Critical Care Society (PCCS), said: 

I’m pleased that many members of the paediatric critical care community have been engaged with throughout the process of this review. This is a hugely important issue for all of us of within the community who are closely involved in sometimes challenging decisions relating to the care of critically unwell children. I encourage all our members to carefully review the recommendations made by the Nuffield Council on Bioethics.