Independent review: Disagreements in the care of critically ill children

The Nuffield Council on Bioethics has been commissioned by the Department of Health and Social Care to conduct an independent review of the disagreements that can arise between families and healthcare teams in the care of critically ill children in England.

The care and treatment of children who are critically ill often involves complexity and uncertainty, and disagreements can arise between parents and healthcare staff about the best course of action. Sometimes these disagreements become entrenched, and are taken to the courts for a decision. Legal action can be a long process, and one that protracts disagreements further. High-profile court cases in the UK have highlighted the distress and heartbreak that these kinds of disagreements cause for everyone involved.

The focus of the review will be on the relationship between parents/carers and healthcare teams in the care of a critically ill child and why, in some cases, the relationship breaks down. The review will also look at how disagreements, once they have come to light, can be resolved as collaboratively and sensitively as possible with all involved able to have their voices heard.

Disagreements can arise in a wide range of situations in the care of critically ill children, and none will be excluded from the review.  It is likely the review will encounter examples of disagreements about the continuation and withdrawal of life sustaining treatment, and the commencement of curative therapies, including novel therapies not approved for use within the NHS.

We are keen to hear perspectives from families and healthcare teams themselves to inform this review. We aim to further understand the causes of disagreements in the care of critically ill children, how they may be avoided, and how to sensitively handle their resolution. 

For more information, please contact children@nuffieldbioethics.org, or see our policy briefing note.