The National Institute for Health and Clinical Excellence (NICE) in the UK has published clinical guidelines on providing palliative care to seriously ill babies, children and young people. The new guideline, entitled End of Life Care for Infants, Children and Young People: Planning and Management, describes the care and support that children with life-limiting conditions – and their families – should expect to receive from the point at which their needs are recognised until the end of their lives.

Published in December 2016, the guidelines aim 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 was commissioned with the aim to standardise end of life care for infants, children, and young people living with a life limiting condition, and thus promote equity and consistency.

The 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
  • Care at home

The leading UK charity Together for Short Lives in collaboration with Martin House Children’s Hospice ran three focus groups across England with children and young people with life-limiting and life-threatening conditions, the outcome of which was drawn on significantly by NICE in developing this guideline. They also submitted evidence to the consultation process which was informed by their members, families of children with life-limiting conditions and bereaved parents.

Most significantly, NICE recommends:

  • the child and their family should play an active role in discussions about their care;
  • where possible, the child should receive palliative care, including end of life care, in the place they choose;
  • children with life-shortening conditions should be cared for by a multidisciplinary team who meet regularly to discuss the child’s care;
  • asking the child who they would like to be involved in discussions about their care, such as “other family members (for example siblings or grandparents) or people important to them (for example friends, boyfriends or girlfriends)”.

The guidelines can be downloaded from the NICE website here or the British Medical Journal has made available a four page summary here.