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Book Details
Abstract
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.
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.
Jori Bogetz, Assistant Clinical Professor of Pediatrics, UCSF Benioff Children’s Hospital
This book would be extraordinarily useful for any parent faced with the problems of a dying child. Anybody working in palliative care, particularly pediatric palliative care, would benefit from reading this book.
International Association for Hospice and Palliative Care
Sacha Langton-Gilks is a singing teacher, garden consultant, writer and child health campaigner. She is the Lead Champion of The Brain Tumour Charity's HeadSmart Campaign, and advocates for many other charities.
This invaluable book will be of enormous help to other parents treading this rather tortuous and sometimes agonising path towards top quality care at the end of life. It is a heartfelt account of Sacha's personal experience, with useful practical information, helpful insights, and guidance supporting better conversations and choices.
Keri Thomas, National Clinical Lead, The National GSF Centre for End of Life Care
In openly and honestly sharing the "difficult conversations" she had with her son, his medical team, and family and friends, Sacha has reframed the narrative around paediatric palliative care to show that a good death is possible when end of life planning is done well. Follow the child is both a beautiful account of a mother's love and a practical guide for anyone caring for a life limited child
Stephanie Nimmo, Author, Was this in the plan?
Table of Contents
| Section Title | Page | Action | Price |
|---|---|---|---|
| Follow The Child: Planning and Having the Best End-of-Life Care for Your Child by Sacha Langton-Gilks | 3 | ||
| Acknowledgements | 11 | ||
| Preface | 15 | ||
| Introduction | 17 | ||
| 1. The Difficult Conversation(s) Part I: An Incurable Diagnosis | 27 | ||
| Fear | 28 | ||
| Denial | 30 | ||
| The bystander effect and the need for clarity | 31 | ||
| Dealing with the P-word – palliative | 33 | ||
| Hope | 36 | ||
| Parallel planning | 38 | ||
| What you can do if you disagree | 40 | ||
| Telling the child and their siblings | 43 | ||
| Young people are the experts in their own condition – tips for doctors (and parents!) | 44 | ||
| How it worked for us and others | 45 | ||
| Reactions of members of the family to the Difficult Conversation – siblings and parents | 56 | ||
| 2. The Difficult Conversation Part II: The Advance Care Plan | 61 | ||
| What is it? | 62 | ||
| Who draws it up? | 64 | ||
| Where does it get drawn up? | 65 | ||
| When does it get drawn up? | 65 | ||
| What to do before the meeting – How do I approach it? | 65 | ||
| What treatments do you want or not want for your child, including Do Not Resuscitate (DNR) decisions? | 67 | ||
| Place of death (PoD) | 70 | ||
| Anti-panic protocol – emergency scenarios | 79 | ||
| The wishes – making memories and recording them | 81 | ||
| A list of who you want with you in support | 83 | ||
| Organ/tissue donation and body donation (including brain) | 85 | ||
| Laying out and funeral arrangements and the will | 89 | ||
| How it worked for us and others | 94 | ||
| 3. The Last Two Weeks (Roughly) | 104 | ||
| What’s changed? | 104 | ||
| Anticipatory grief | 104 | ||
| Coping and respite | 105 | ||
| Saying goodbye | 108 | ||
| Symptoms’ control | 110 | ||
| How it worked for us and others | 110 | ||
| Chapter 4. The Last Hours \n(24–48 Hours Roughly) | 122 | ||
| What you can do for your child | 123 | ||
| What to expect when a body shuts down | 125 | ||
| How will you know when death happens? | 128 | ||
| How it worked for us and others (this section’s very hard, so skip if necessary) | 128 | ||
| 5. The Hours after Death | 135 | ||
| Your choices: Your child does not have to remain where they died (PoD) | 135 | ||
| What can you do for your child after they have died? | 141 | ||
| Changes to the body | 143 | ||
| The legal paperwork stuff | 145 | ||
| How it worked for us and others | 151 | ||
| 6. Celebration | 159 | ||
| Burial (interment) | 160 | ||
| Cremation | 162 | ||
| Ceremonies | 165 | ||
| Conclusion | 173 | ||
| My Eulogy for DD | 175 | ||
| Resources | 182 | ||
| Appendix: Integrated Person-Centred Planning for Children, Young People and Families Receiving Palliative Care - Guidance and Toolkit by Rebecca Riley, Rachel Tyler and Sherelle S. Ramus | 190 | ||
| Forewords | 192 | ||
| Introduction | 192 | ||
| Part 1. Core Person-Centred Tools | 196 | ||
| 1. Like and Admire | 196 | ||
| 2. Important To/ Important For | 196 | ||
| 3. Relationship Circles | 198 | ||
| 4. Working/Not Working | 200 | ||
| 5. One-Page Profiles | 204 | ||
| Part 2. Other Person-Centred Tools | 206 | ||
| 7. Communication Charts | 208 | ||
| 8. What I want and Do Not Want Now and In the Future - My Hopes and Fears | 214 | ||
| 9. My History... and My Important Memories | 214 | ||
| 10. Good Day / Bad Day | 216 | ||
| Acknowledgements | 219 | ||
| 1. Authors | 219 | ||
| 2. Contributors and Supporters | 219 | ||
| Bibliography | 221 | ||
| Resources | 222 | ||
| Index | 223 | ||
| Blank Page |