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Families of children with life-limiting conditions must be put at the heart of care, says NICE

New guidelines help healthcare staff to navigate end of life care planning for children and young people.
Caring for dying children

Families of children with life-limiting conditions must be put at the heart of care, according to new guidance from the National Institute for Health and Care Excellence (NICE).

The guidance covers the planning and management of end of life and palliative care for children under 18 with life-limiting conditions.

NICE states that the patients whole family should play a central role in decision-making and care planning.

It also calls on health and social care professionals to ensure parents and siblings get the practical and emotional support they need.

Appropriate information

Staff should also think about how to provide information to children and young people in accordance with their age and level of understanding, says NICE.

The guidance suggests that, where appropriate, play, art and musical activities could

Families of children with life-limiting conditions must be put at the heart of care, according to new guidance from the National Institute for Health and Care Excellence (NICE).


Picture: iStock

The guidance covers the planning and management of end of life and palliative care for children under 18 with life-limiting conditions.

NICE states that the patient’s whole family should play a central role in decision-making and care planning.

It also calls on health and social care professionals to ensure parents and siblings get the practical and emotional support they need.

Appropriate information

Staff should also think about how to provide information to children and young people in accordance with their age and level of understanding, says NICE.

The guidance suggests that, where appropriate, play, art and musical activities could be used as a means of communication, as well as social media.

NICE also emphasises the importance of developing an advanced care plan at an appropriate time. This should include an outline of the child or young person’s life ambitions and wishes, and anything that might help them, including recording memories and a preferred place of care and death.

Guidance approval

Helen Sibley, director of care for Shooting Star Chase, said the children’s hospice charity ‘wholeheartedly’ supported NICE’s guidance. She highlighted the importance of caring for the entire family during a child’s death.

Mark Baker, NICE director of the centre for guidelines, said: ‘To lose a child is a tragic, life-changing event.

‘But the care given to a child and their family during this difficult time can offer great comfort, if done properly.

‘This guidance clearly sets out best practice for all those involved in palliative care, whether that be at home, in a hospice or in hospital.’


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