A Parent’s Guide to Your Child’s Eating and Drinking at End of Life

It can be difficult and distressing for parents to see their child change as their conditions worsens. This guide is designed to help them and their child tackle some of the most common symptoms at the end of life, particularly those associated with feeding and drinking.

Download the guide here: End of life_Feeding

PatchSA Advance Care Plan

This document is a tool for discussing and communicating the wishes of a child or young person and parents and/or their family. Its aim is to explore what may happen as the child’s illness progresses, particularly towards the end of life, but at a point when there is time for decisions to be discussed and made.  It is particularly useful in an emergency when informed consent cannot be given by the patient or next of kin. Should you require this document as a Word document, please email info@patchsa.org and we will send it to you.

Download the plan here: PatchSA_Advanced_Care_Plan_Final

PatchSA Terminal Care Plan Checklist

This checklist is a helpful guide for healthcare practitioners to use in the approach to and after the death of a child. It serves as a reminder of all the things that need to be worked through and taken care of for the child and the family at this difficult time.

Download the checklist here: Patch SA Terminal Care Plan Checklist _final

Paediatric Palliative Care Screening Scale (PaPaS Scale) Version 2

The PaPaS Scale is a tool developed to assess the palliative care needs of children and improve the timely identification of those who can benefit from a palliative care approach. It consists of five domains:

  1. The trajectory of disease and impact on daily activities
  2. Expected outcomes of disease-directed treatment and burden of treatment
  3. Symptom burden
  4. Preferences of the patient, parents, or health care professionals
  5. Estimated life expectancy.

A score of 15 or more indicates that palliative care should be started.

Find out more and access the scale from BMC Pallaitive Care 12, Article number: 20 (2013): The development of an instrument that can identify children with palliative care needs: the Paediatric Palliative Screening Scale (PaPaS Scale): a qualitative study approach

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.

Download: High Level EOL Delivery Pathway for children

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.

Purchase the book 

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 access

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

End of Life Guide for Families (Together for Short Lives)

This guide provides practical information to support families at the most unbearable of times. It answers questions and provides support.

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