This guideline covers the planning and management of end of life and palliative care for infants, children and young people (aged 0 to 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.
The guideline does not cover children and young people without a life-limiting condition who die unexpectedly (for example, accidental death).
MHRA advice on gabapentin: In July 2019, we updated information in this guideline to reflect a change in the law relating to gabapentin. As of 1 April 2019, because of a risk of abuse and dependence gabapentin is controlled under the Misuse of Drugs Act 1971 as a class C substance and is scheduled under the Misuse of Drugs Regulations 2001 as schedule 3.
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
- care at home
Who is it for?
- 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
- Children and young people with life-limiting conditions and their families and carers
Guideline development process
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.