Clinicians caring for life-limited children should ensure they are providing care for the whole family, according to guidelines published today.
Staff in hospitals, hospices and care homes should provide practical and emotional care for families – recognising they are facing the pressure of looking after a dying child, according to the National Institute for Health and Care Excellence guidance.
The guidance, for the care of England’s 40,000 life-limited children, says that advanced care plans should be routinely up-dated – and these should include decisions about treatment and organ donation.
Clear and easy-to-explain information should be tailored to a sick child’s age and level of understanding, it says. This might include the use of art, music and digital media.
There should also be practical support for care at home – if it is wanted – and advice on how to manage hydration, nutrition and symptoms in the final days of life.
Paediatrician Dr David Vickers, of the Cambridgeshire Community Services NHS Trust, led the guideline development.
He said: "Providing care for a dying child can be an enormous challenge. It can place a substantial strain on the family.
"Mothers and fathers can be forced into a medical role in order to provide the care their son or daughter needs. It is important for us to recognise this and offer help to alleviate the pressure.
"By getting this right, and being there for whoever needs us, wherever they need us, we can ensure siblings continue to be a brother or sister, and parents can have time to simply be mum and dad."
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