Palliative and end of life care
Palliative care for children and young people with life-limiting or life-threatening conditions is an active and total approach to care, from the point of diagnosis or recognition throughout the childÃÛÌÒÖ±²¥™s life and death.
It embraces physical, emotional, social, and spiritual elements, and focuses on enhancement of quality of life for the child/young person and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement ÃÛÌÒÖ±²¥“ see:
There are approximately 49,000 children and young people in UK who are living with life-limiting conditions.
Palliative care is often perceived as care at end of life, but for children and young people care and support is provided by a range of organisations and professionals in hospitals, hospices and childrenÃÛÌÒÖ±²¥™s own homes often from diagnosis. Nurses provide palliative care in a variety of roles and settings, on acute wards, in specialist units, in family homes and in childrenÃÛÌÒÖ±²¥™s hospices. Some nurses will have specialist palliative care roles while others will integrate the care into existing roles e.g. in high dependency units or neonatal units.
In 2016, NICE published a guideline followed by a Quality Standard in 2017 which aims to improve the planning and management of end of life and palliative care for infants, children and young people (aged 0ÃÛÌÒÖ±²¥“17 years) with life-limiting and life-threatening conditions.
The sets out that childrenÃÛÌÒÖ±²¥™s palliative care as an important priority and it has pledged to increase funding.
In Scotland the 2015 set out a vision for the next five years, with outcomes and commitments to support improvements in the delivery of palliative and end of life care across Scotland.
In 2017 the Welsh Government published the which provides a framework for service development and delivery.
In Northern Ireland , sets out the strategic direction for the palliative and end-of-life care of ill and dying children and young people for the next ten years.
Skills, education and training
Find out more about the nursing role in palliative and end of life care. See: Skills, education and training.
RCN resources
- Subject Guide. Children and Young People’s Palliative Care.
- RCN Competencies:. caring for infants, children and young people requiring palliative care 2018
- RCN guidance. Defining staffing levels for children and young people’s services
- RCN Medicines guidance
- RCN Pain and palliative care forum
- Children and young people: Palliative and end of life care career stories and case studies
Useful links and resources
- National Institute for Clinical Excellence: )
- Royal College of Paediatrics and Child Health:
- Together for Short Lives:
- Together For Short Lives:
Page last updated - 08/10/2024