Palliative care for children and young people is an active and total approach to care, from the point of diagnosis, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person, and support for the whole family. It includes the management of distressing symptoms, provision of short breaks, end of life care and bereavement support.
Contents
Palliative care can be introduced at any point throughout a child’s life; it is completely individual. Some children may require palliative care from birth, others only as their condition deteriorates. Families may also vary as to whether they wish to pursue treatments aimed to cure or significantly prolong life. In practice, palliative care should be offered from diagnosis of a life-limiting condition or recognition that curative treatment for a life-threatening condition is not an option; however, each situation is different and care should be tailored to the child.
Terminology
UK
There are an estimated 49,000 children and young people in the UK living with a life-threatening or life-limiting condition that may require palliative care services. A 2015 survey from the Royal College of Nursing (RCN) found that nearly a third of children's nurses said they don't have the resources to deliver adequate care in the home setting.
Together for Short Lives and Rainbow Trust Children's Charity are two UK registered charities that deal with children’s palliative care.