This guideline covers the physical, emotional, social and spiritual elements of end of life care, and focuses on improving the child or young person’s quality of life and supporting their family and carers. There are, for instance, recommendations on managing distressing symptoms and providing care and bereavement support after death. Recommendations have also been made about how services should be delivered. The guideline is aimed at all providers of paediatric end of life care, whatever their level of practise, and also for children and young people with life-limiting conditions and their parents or carers.

The guideline covers children and young people with a life-limiting condition. It does not make recommendations for children or young people who die suddenly and unexpectedly (for example due to accidental death).

Contents

• 1. Guideline summary
  • 1.1. Guideline Committee membership, National Guideline Alliance (NGA) staff and acknowledgements
  • 1.2. What is a NICE clinical guideline?
  • 1.3. Supportive framework
  • 1.4. Recommendations
  • 1.5. Key research recommendations
  • 1.6. Research recommendations
  • 1.7. Other versions of the guideline
  • 1.8. Schedule for updating the guideline
• 2. Introduction
  • 2.1. For whom is this guideline intended
  • 2.2. Related NICE guidance
  • 2.3. Remit
• 3. Guideline development methodology
  • 3.1. Developing the review questions and protocols
  • 3.2. Searching for evidence
  • 3.3. Reviewing and synthesising the evidence
  • 3.4. Involving children and young people with life-limiting conditions in this guideline – focus group research
  • 3.5. Developing recommendations
• 4. Providing information
  • 4.1. Review question
  • 4.2. Introduction
  • 4.3. Description of clinical evidence
  • 4.4. Summary of included studies
  • 4.5. Clinical evidence
  • 4.6. Economic evidence
  • 4.7. Evidence statements
  • 4.8. Linking evidence to recommendations
  • 4.9. Recommendations
• 5. Communication
  • 5.1. Review question
  • 5.2. Introduction
  • 5.3. Description of clinical evidence
  • 5.4. Summary of included studies
  • 5.5. Clinical evidence
  • 5.6. Economic evidence
  • 5.7. Evidence statements
  • 5.8. Linking evidence to recommendations
  • 5.9. Recommendations
• 6. Shared decision-making and Advance Care Planning
  • 6.1. Advance Care Planning
  • 6.2. Preferred place of care and place of death
  • 6.3. Organ and tissue donation
• 7. Provision of care
  • 7.1. Multidisciplinary teams
  • 7.2. End of life care around the clock
  • 7.3. Rapid transfer
  • 7.4. Care based in the child or young person's home
• 8. Support
  • 8.1. Emotional and psychological support and interventions
  • 8.2. Social and practical support
  • 8.3. Religious, spiritual and cultural support
• 9. Managing distressing symptoms
  • 9.1. Introduction
  • 9.2. Managing pain
  • 9.3. Managing agitation
  • 9.4. Managing respiratory distress
  • 9.5. Managing seizures
• 10. Managing hydration and nutrition
  • 10.1. Managing hydration
  • 10.2. Managing nutrition
• 11. Recognising that a child or young person is likely to die within hours or days
  • 11.1. Review question
  • 11.2. Introduction
  • 11.3. Description of clinical evidence
  • 11.4. Summary of included studies
  • 11.5. Clinical evidence
  • 11.6. Economic evidence
  • 11.7. Evidence statements
  • 11.8. Linking evidence to recommendations
  • 11.9. Recommendations
  • 11.10. Research recommendations
• 12 References
• 13. Glossary and abbreviations
• 14. Appendices
  • Appendix A. Scope
  • Appendix B. Stakeholders
  • Appendix C. Declarations of interest
  • Appendix D. Review protocol
  • Appendix E. Search Strategies
  • Appendix F. Summary of identified studies
  • Appendix G. Evidence tables
  • Appendix H. Excluded studies
  • Appendix I. Forest plots
  • Appendix J. GRADE tables
  • Appendix K. Health economics
  • Appendix L. Together for Short Lives Report

Developed by the National Guideline Alliance, hosted by the Royal College of Obstetricians and Gynaecologists

Disclaimer: Healthcare professionals are expected to take NICE clinical guidelines fully into account when exercising their clinical judgement. However, the guidance does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of each patient, in consultation with the patient and/or their guardian or carer.