End of life care for infants, children and young people with life-limiting conditions: planning and management - update information

    Publication year: 2019

    This guideline covers the planning and management of end of life and palliative care in for infants, children and young people (aged 0–17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.

    This guideline includes recommendations on:

    This guideline includes recommendations on: Advance Care Planning; Emotional and psychological support and interventions; managing distressing symptoms, such as pain, agitation, seizures or respiratory distress; hydration and nutrition; recognising that a child or young person is likely to die within hours or days; care and support for parents, carers and healthcare professionals after the death of a child or young person; and care at home.

    This guideline can be used by:

    Health and social care professionals; All other professionals involved in caring for infants, children and young people with life-limiting conditions (for example, education professionals and chaplains); Commissioners and providers; and Children and young people with life-limiting conditions and their families and carers.