NICE guidance

National Institute of Health and Care Excellence (NICE) guidelines are evidence-based recommendations for health and care in England.

They set out the care and services suitable for most people with a specific condition or need, and people in particular circumstances or settings.

NICE guidelines help health and social care professionals to:

  • prevent ill health
  • promote and protect good health
  • improve the quality of care and services
  • adapt and provide health and social care services

NICE provides two pieces of guidance which ICBs may wish to use in designing palliative and end of life care services for children and young people. They are consistent with ICBs’ duty to commission palliative and end of life care and the other guidance we refer to in this section.

NICE Guidance NG 61: End of life care for infants, children and young people with life-limiting conditions: planning and management

This NICE guidance covers the planning and management of eolapc for infants, children and young people (aged 0 to 17) with life-limiting conditions.

It 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

NICE Quality Standard for End of life care for infants, children and young people [QS160]

This quality standard covers end of life care for infants, children and young people (from birth to 18 years) who have a life-limiting condition. It includes six quality statements focused on areas for improvement:

Statement 1: Infants, children and young people with a life-limiting condition and their parents or carers are involved in developing an advance care plan.

Statement 2: Infants, children and young people with a life-limiting condition have a named medical specialist who leads and coordinates their care.

Statement 3: Infants, children and young people with a life-limiting condition and their parents or carers are given information about emotional and psychological support, including how to access it.

Statement 4: Infants, children and young people with a life-limiting condition are cared for by a multidisciplinary team that includes members of the specialist paediatric palliative care team.

Statement 5: Parents or carers of infants, children and young people approaching the end of life are offered support for grief and loss when their child is nearing the end of their life and after their death.

Statement 6: Infants, children and young people approaching the end of life and being cared for at home have 24-hour access to both children’s nursing care and advice from a consultant in paediatric palliative care.