Paediatric Palliative Care is a rapidly developing new approach to care, organised in some places as a speciality, to improve the care of children with life-limiting conditions. It is the science and art of lessening physical, psychosocial, emotional and existential suffering by a multi-disciplinary team that mobilises existing resources.
The World Health Organisation (WHO) defines paediatric palliative care as the active total care of the child’s body, mind and spirit that also involves giving support to the family. Palliative care should begin when illness is diagnosed, and continue regardless of whether or not a child receives treatment directed at the disease. Healthcare providers must evaluate and alleviate a child’s physical, psychological, and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centres and even in children’s homes.
Mattie Stepanek, a child who died from a life limiting neuro-muscular illness, had this to say about paediatric palliative care:
“Palliative care no longer means helping children die well, it means helping children and their families to live well and then, when the time is certain, to help them die gently”.
In the Western Cape there are an estimated 91 332 children needing generalist palliative care, with 34 706 needing specialist palliative care (UNICEF 2013).