A child or young person with a terminal illness needs the best possible end of life care plan. This work will help guide families through the entire process, giving information about available support, what questions you should ask and how to care for your child at home. Drawing on her family's own experiences and those of other parents facing the death of a child from illness or a life-limiting condition, Sacha Langton-Gilks explains the challenges, planning, and conversations that can be expected during this traumatic period. Practical advice such as how to work with the healthcare professionals, drawing up an Advance Care Plan, and how to move care into the home sit alongside tender observations of how such things worked in her own family's story. The book also includes a template person-centred planning document, developed by experts in the field. Empowering and reassuring, this book will help families plan and ensure the best possible end-of-life care for a child or young person. Grief in this book is specifically anticipatory grief, that is, loss before death, and therefore not intended to assist those who have lost a child. The author is not religious and her ambiguity about faith will be familiar to many families living in Ireland: "my family are in various stages of lapsed Church of England (Protestant). We lamely uphold the broad outlines of the Christian year and both the state primary and secondary schools, where our children attend and I teach, are Church of England." This book documents a British experience (with some input from a parent from the US, who did make faith based decisions, so these chapters may be particularly helpful to readers who practice a faith), so there may be some discrepancies between services as discussed and services available in Ireland. The author's son died at home, which was his choice, but the book features accounts from parents whose children died in hospitals and hospices are also included. His death was cancer-related, but includes accounts from other parents whose children had a variety of diagnoses: Dandy-Walker malformation/syndrome, cerebral palsy, seizures, musculoskeletal and congenital abnormalities, metachromatic leukodystrophy, Krabbe's leukodystrophy, a child who was deprived of oxygen at birth, and parents who lost a baby.

Audience: Adult caregivers, Professionals

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