Parent authors book on planning the best end-of-life care for a child

Categories: Care.

“Every child, young person and their families have the right to access timely, specialist palliative care and it is only by raising our voices internationally that we can hope to be heard against the vast demographic of elderly people at the end of their lives in our countries, which governments prioritise on the basis of the scale of need,” writes Sacha Langton-Gilks, author of the book ‘Follow the Child’ and Lead Champion for The Brain Tumour Charity’s HeadSmart Campaign in the UK. 

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.

In the latest ICPCN blog, Sacha writes “It’s now five long, hard years since my eldest child, David, or DD as we call him, died from his cancerous brain tumour, aged 16. I’ve been asked to speak to both parents and health professionals about how we managed a good death for DD at home and by good death I mean a good quality of life up until his inevitable death. This was no mean feat with sickness, pain, seizures and severe dementia but if I can do it with good planning in place and the right medical back up, then anyone can.” 

Describing the motivation for the book, she writes, “The response from both parents and doctors was so positive that I was asked to write a book focussing on how to do this planning, so you have the best chance of fulfilling your child’s wishes and minimising the risks of emergency admission to hospital. I only agreed having asked Together For Short Lives, the leading palliative charity for babies, children and young people in the UK, if they could link me to other bereaved parents who were equally passionate about palliative care and the positive impact it had on their families at the end of their child’s life, as well as health care professionals who could check what we were writing.”

The book also includes a template person-centred planning document, developed by experts in the field.  

Describing the book, Jori Bogetz, Assistant Clinical Professor of Pediatrics, UCSF Benioff Children’s Hospital writes, ‘This beautiful and heartfelt book is full of meaningful stories and concrete advice for families and healthcare providers caring for children with serious illness. It is a treasure and a wonderful resource that can help us all continue to love and support children throughout their lives.’  

Place your online order for this book here

Read the blog on anticipatory grief and the book written by Sacha Langton-Gilks on the ICPCN website.     

Follow developments through social media using the hashtag #FollowTheChild

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