Resources for End-of-Life Planning and Care

PLANNING END-OF-LIFE CARE IN BRCH AND FOR CHILDREN WHO MAY HAVE A CHANGE IN CARE LOCATION AT THE END OF LIFE

This document offers practical guidance to professionals who are caring for a child or young person who has been identified as requiring ‘palliative care’ or who may be approaching the end of their life and so likely to require end of life (EOL) care in the near future. EOL care may follow a period of palliative care or an acute illness. This guidance is not a clinical decision making tool, but an aid to planning timely care.

Childrens End of Life Guidance 2014 – University Hospitals Bristol


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.

High Level EOL Delivery Pathway for children


A PARENT’S GUIDE: MAKING CRITICAL CARE CHOICES FOR YOUR CHILD

This leaflet has been developed by Together for Short Lives in the UK for parents, carers or legal guardians who care for a child with a life-limiting or life-threatening health condition. It has been written to support you whilst you are thinking about the critical care options for your child.

Click here to order or download a free copy


END OF LIFE PLANNING

This factsheet from Together for Short Lives aims to prepare families for the end of life of their child. It suggests thinking about an end of life care plan, so that when the time comes, you are prepared. It also signposts to organisations that can help when the time comes.

Click here to download


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.

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SHARING THE BURDEN OF DECIDING: HOW PHYSICIANS AND PARENTS MAKE END-OF-LIFE DECISIONS

This research by Mirjam de Vos from Amsterdam University in The Netherlands consists of four successive studies: an interview-study among Dutch neonatologists; a survey among Dutch paediatric intensivists, oncologists, neurologists, neurosurgeons and metabolic pediatricians by means of a questionnaire; an integrative review of international empirical studies among parents; and an observational study of end-of-life conversations between parents and physicians in two University Medical Centers. It ends with practical recommendations to improve a shared process of end-of-life decision-making in children.

Download at: http://hdl.handle.net/11245/1.446966


VOICING MY CHOICES

A Planning Guide for Adolescents & Young Adults helps young people living with a serious illness to communicate their preferences to friends, family and caregivers.

Click here to order a copy.


PEDIATRIC MY WISHES

My Wishes is a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill. Like Five Wishes, My Wishes also helps begin conversations among children, parents and caregivers.

Click here to order a copy


THE CONVERSATION PROJECT – PEDIATRIC STARTER KIT

A Starter Kit specifically designed to help parents of seriously ill children who want guidance about having the conversation” with their children.  Parents offer this new Starter Kit as a resource to help parents and loved ones begin a conversation with seriously ill children.

Click here to download a free PDF Starter Kit


 

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