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

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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 of stressful and distressing circumstances and need help to build resilience. Support for grief and loss should be provided for parents and/or carers.

A multidisciplinary team, including members of the specialist paediatric palliative care team, should care for the child and ensure distressing symptoms, particularly pain, are well managed.

Patients approaching end of life and receiving care at home should have 24-hour access to children's nursing care and advice from a consultant in paediatric palliative care, NICE says.

Implications for nurses

Good communication and care coordination are essential.  Be aware that most children with life-limiting conditions and their parents want to be fully informed about the condition and its management. Allow plenty of time for discussion.

Regularly review with children and families how they want to be involved in making decisions as this varies.

Be aware of the importance of talking about dying, and if appropriate discuss with patients and their families. Ask whether they would like support in talking to each other about this.

Expert comment

 Katrina McNamara, director of service development and improvement at charity Together for Short Lives

‘Communication and information throughout the child’s care journey, with parents treated as partners in that care, is key. We know there is variation in the level of support available and quality of information received by families with different conditions.

'There is a lot of very clear, age specific information for families affected by cancer, and psychological and emotional support is usually available. But this is not always the case with metabolic and neurological conditions. We want all families to receive the highest standard of care regardless of age, condition or where they live.’

Find out more

Erin Dean is a freelance health writer

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