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

Context

The Royal College of Physicians report Why children die: death in infants, children and young people in the UK (2014) noted that, despite improving mortality rates, in 2012 more than 2,000 children and young people aged between 1 and 19 died in England and Wales. Approximately 40% of deaths in children and young people under 15 are neonatal deaths (Office for National Statistics, 2016). In addition, it is estimated that almost 50,000 children and young people aged 19 or under in the UK (40,000 of these in England) are living with a life-limiting condition and may need palliative care. They may have widely varying needs, as there are over 300 conditions that could be classed as life-limiting or life-threatening in this age group. Some of these children and young people also have severe disabilities and multiple complex health and social care needs.

End of life care combines a broad range of health and other care services, including hospitals, hospices, primary care and community professionals, ambulance services, dedicated palliative care teams, and other support providers. Services span the public sector and charities. Because of this, good communication, care coordination, and effective networking are essential. Children and young people are likely to need different services at different stages of their illness and they will get the best care possible when services communicate with and support each other.

Palliative care for adults is a well-established discipline, with evidence that if it starts early it can both enhance and even prolong life. Paediatric palliative and end of life care generally lasts longer and is for a wider range of life-limiting conditions than for adults. It begins when a life-limiting condition is diagnosed (which could be diagnosed during the antenatal period), and continues even if a child is having treatment for the underlying condition (World Health Organization 1998). Young people may continue to have palliative care after they turn 18, and it may be part of the transition to adult care (see the NICE guideline on transition from children's to adults' services).

Children, young people and their parents or carers can have varied ideas about what represents good palliative and end of life care, and they may have differences of opinion with each other. They may also have different priorities at different stages in their lives.

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

To help develop this guideline, a focus group of young people with life-limiting conditions were asked for their views and experiences of care. See the full guideline for the report presenting these findings.

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