Children’s palliative care is about promoting the best possible quality of life and care for every child with a life-limiting or life-threatening condition and their family. Giving families real choice has been key to this approach: a choice of place of care; a choice of place of death; and a choice of emotional and bereavement support.

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, care at the end of life and bereavement support.

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.

Palliative Care Includes:

  • Pain and management to keep pain and symptoms under control.
  • Advance care planning to ensure that families receive the support and care they need when they need it.
  • Continuity of care so that all care providers, including GPs, local hospitals, community nursing teams, hospices and schools, put the child first.
  • Psychological support for families.
  • End-of-life care including the option for the child or young adult to die at home, if this is what he or she and family wish.
  • Bereavement support for the family during the child’s illness and following the child’s death.
  • Short stays at a hospice such as Richard House to take pressure of the family and to offer the child or young person an opportunity to enjoy social interaction and leisure facilities.

How Does Children’s Palliative Care Differ from Adult Palliative Care?

A number of childhood conditions are rare and the length of illness can vary from days to years. A child may survive into adulthood, extending palliative care over many years. Therefore, children with life-limiting conditions may require palliative care for long periods of time.

Children continue to develop physically, emotionally and cognitively, which means their medical and social needs as well as their understanding of disease and death is complex.

Providing education to sick children is critical and a legal entitlement for all children with palliative care needs.

Palliative care affects the whole family, with the burden of care falling on parents and siblings or grandparents.

Therefore,some services are more likely to be home-based rather than hospital-based. In addition, more than one child may be affected in the family, and genetic counselling may be necessary.

Paediatricians tend to remain involved in the care of the children they care for, who may need palliative care through their lives and work alongside palliative care.