Clinical update

End of life care quality standard

Read our update on guidelines published by the National Institute for Health and Care Excellence on improving end of life care for children in UK

Essential facts

Standards to improve end of life care for the almost 50,000 UK children with a life-limiting or life-threatening condition have been published by the National Institute for Health and Care Excellence (NICE).

The needs of children can vary widely because there are more than 300 conditions involved. The six new standards cover areas that are a high priority for improvement and draw on the guidance on end of life care for children and young people previously published by NICE (2016).

NICE says that the child and parents should be involved in developing an advanced care plan. This includes involving parents when a potentially life-limiting condition is diagnosed in a baby during pregnancy.

The quality standards emphasise the importance of providing adequate information as well as emotional and psychological support. Children with life-limiting conditions can face a wide range


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