NICE have published a new guideline on end of life care for children and young people.
End of life care for infants, children and young people with life-limiting conditions: planning and management covers the planning and management of end of life and palliative care for infants, children and young people (aged 0–17 years) with life-limiting conditions.
Central to the guideline is the importance of involving children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.
It highlights the importance of involving and delivering care and support for the whole family, not just the dying child, and advises that people working in health and social care to make sure mothers and fathers, brothers and sisters, get the practical and emotional support they need to care for a family member at the end of life.
Around 40,000 children and young people are estimated to be terminally ill in England. They can have complex needs, and parents, and often siblings, become carers.
In developing the guideline NICE spoke to children at the end of their lives, as well as their brothers and sisters, in order to reflect what they felt was important from their care.
Guideline focus groups took place in Yorkshire, London and Bristol. Children and young people aged between 12 to 18 years participated and shared what they think good end of life care looks like.
They valued being involved in decisions about their care and the importance in tailoring care for the individual’s needs. They also expressed a desire to enjoy their lives. They did not want to be defined by their illness and symptoms.
You can read more about the guideline and how it was developed on the NICE website.