Palliative and End-of-Life Care for Children with Intellectual Disabilities

This chapter provides insight into the international literature on children’s palliative care, with a particular focus on children with intellectual disabilities. Key issues addressed include the principles of palliative care, the specific groups of children requiring palliative care, and if and how children’s care differs from adult palliative care. Family centred approaches to palliative care are presented, and ethical issues for families are considered. A summary of specific symptom control is included, and the chapter concludes with discussion about the bereavement care needs of the child, family, siblings and health professionals. A reflection with questions at the end of the chapter provides an exemplar of practice for a child with intellectual disability requiring palliative care.