Palliative care management of a child with juvenile onset Huntington’s disease

Abstract

This is a case report of the palliative care management of a 13-year-old girl who died of juvenile onset Huntington's disease in a children's hospice in the southeast of England. It outlines her disease progression and describes the care that she received. In particular, the medications and other measures used to control her symptoms during her last 10 days are discussed. The article also explores some of the ethical difficulties of caring for children dying from degenerative disorders. Although juvenile onset Huntington's disease is an extremely rare condition, the issues around terminal care management are very similar to those for any neuro-degenerative disorder, whether in an adult or child. A number of children's hospices have opened in the last 10-15 years in the UK. They accept children with a wide range of life-limiting conditions and have become experts in offering respite care and symptom control to these children and their families. They are chosen increasingly as the place of death for such children.