Clinical update

End of life care for infants, children and young people with life-limiting conditions

End of life care for infants, children and young people with life-limiting conditions.

End of life care for infants, children and young people with life-limiting conditions. 


About 50,000 children and young people in the UK are living with a life-limiting
condition that may need palliative care. Picture: iStock

Essential facts 
According to the Royal College of Paediatrics and Child Health (RCPCH), the UK has one of the worst child mortality rates in Western Europe, with more than 2,000 children and young people, aged one to 19, dying in 2012.

In addition, it is estimated that about 50,000 children and young people in the UK are living with a life-limiting condition that may need palliative care. 

According to the National Institute for Health and Care Excellence (NICE), paediatric palliative and end of life care generally lasts longer and applies to a wider range of conditions – more than 300 – than for adults. Some of these children and young people also have severe disabilities and multiple, complex health and social care needs.  

What’s new 
In December, NICE published new guidance on end of life care for infants, children and young people. It covers the planning and management of palliative and end of life care for those aged up to 17 who have life-limiting conditions, encompassing physical, emotional, social and spiritual elements.

The overall aim is to involve patients and their families in decisions about their care, alongside improving the support that is available to them throughout their lives. There are recommendations on how services should be delivered, managing distressing symptoms and providing care and bereavement support after death. As part of the guideline’s development, a focus group of young people with life-limiting conditions was asked for their views and experiences of care. 

How you can help your patient
Remember that children and young people and their parents or carers may have different ideas about what represents good care. Priorities may also change at various stages, when different services may be needed, which may span the public sector and charities. Discuss and regularly review how everyone wants to be involved in making decisions about care, giving time and the opportunity to talk. Bearing in mind age and level of understanding, think about how best to provide information for children and young people. 

Expert comment 
Karen Brombley, nurse consultant for children and young people’s palliative care, Helen and Douglas House – which provides hospice care for children and young people – and a member of the NICE guideline development group

‘Children can live a long time with a diagnosis of a life-limiting illness, and they need to be able to live as normally as they can, going to school or nursery. Nurses play a pivotal role in making sure this happens, advocating for them and not just focusing on the bad news, but on the good days too. 

‘We’re passionate that this guidance supports anyone in any environment. There is guidance there for nurses working in all areas, whether primary care, a general ward or emergency department. One of the big messages is that we want all children and their families to be able to begin planning as soon as they want to, including making choices about treatment and care right from the early stages. In practice, that might mean a health visitor starts the discussion, as they are with the family at the point they’re becoming concerned, and has the relationship with them.’  


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