End-of-Life Care and Planning Resources
ADVANCED CARE PLAN FOR CHILDREN WITH LIFE LIMITING CONDITIONS (KZN DEPT. OF HEALTH)
This document is a tool for discussing and communicating the wishes of a child / parent(s) or young person. It is particularly useful in a future emergency, when the individual cannot give informed consent for themselves and / or next of kin / parent(s) cannot be contacted (adapted from the NHS, UK, and Big Shoes, Durban).
ALL WALES PAEDIATRIC PALLIATIVE CARE NETWORK – PAEDIATRIC ADVANCE CARE PLAN (PAC-PLAN)
This document is a record of discussions about preferences for what happens in the event of a child becoming seriously unwell. For it to be effective, relevant portions must be easily identifiable by ambulance staff in an emergency.
Download the plan: All Wales PAC-Plan v2.2 dr 6
HIGH LEVEL END OF LIFE CARE DELIVERY PATHWAY
This ‘high level pathway’ has been key in helping professionals to identify and think about what the realistic choices are before approaching the parents to have a conversation about end of life care.
FOLLOW THE CHILD
PLANNING AND HAVING THE BEST END-OF-LIFE CARE FOR YOUR CHILD
Author: Sacha Langton-Gilks
A child or young person with a terminal illness needs the best possible end of life care plan. This book 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.
WITHHOLDING AND WITHDRAWING LIFE-SUSTAINING TREATMENT IN CHILDREN: A FRAMEWORK FOR PRACTICE (Royal College of Paediatrics and Child Health)
This document is a second edition and provides a framework on which to construct a reasoned and compassionate approach towards withholding or withdrawing treatment from a patient. It provides a framework to help all healthcare professionals, children and families and takes into account changes in legislation, legal cases and developments in medical treatment since the first edition.
Click here to download
A GUIDE TO END OF LIFE CARE (Together for Short Lives)
This resource provides information and recommendations for end of life care of the child across the sector regardless of setting. It focuses on principles of best practice in the care of the child and family before death, at the time of death, and after death.
Download from the Together for Short Lives website
NEONATAL AND PEDIATRIC INTENSIVE CARE COMPASSIONATE EXTUBATION RESOURCE GUIDE
This resource guide from UCSF Children’s Hospital in the USA outlines the management of end-of-life care for neonates and children. The withdrawal of artificial life support does not constitute withdrawal of care for patients or their family members. Medical and nursing care are to be continued with the primary focus on the relief of symptoms and provision of comfort, as curative treatments are no longer possible. Emphasis is placed on the quality of life during the dying process and special attention is given to the emotional, psychosocial and spiritual care of patients and their families.
Download the guidelines: Neonatal and Pediatric Intensive Care Compassionate Extubation Resource Guide