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 child’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 – see: Together For Short Lives: Guide to Children’s Palliative Care (2018)

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 children’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 children’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 End of Life Care for Infants, Children and Young People: Planning and Management Guideline (2016) 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 0–17 years) with life-limiting and life-threatening conditions.

The NHS England Long Term Plan (2019) sets out that children’s palliative care as an important priority and it has pledged to increase funding.

In Scotland the 2015 Strategic Framework for Action on Palliative and End of Life Care 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 Palliative and End of Life Delivery Plan which provides a framework for service development and delivery.

In Northern Ireland , A Strategy for Children’s Palliative and EOL Care (2016) 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.