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This handbook has been written to help families who are facing decisions about life support for their seriously ill child. The handbook is based on our own experience of caring for families, of the ethical and practical questions that families face, and based on research with parents who have been through such decisions.
The aim of the handbook is not to tell parents what to do, rather to help them think through questions that they may be facing. We would encourage parents to talk about the information they find here with the caregivers who are looking after their child. We have tried to provide a balanced perspective on end of life decisions, recognising that in some situations there may not be a single right answer and that it may be appropriate either to provide active life support, or to focus on comfort care. However, we are also aware that for many families the difficult decision, the thing that they find hardest, is to stop (or not start) life support. We have therefore placed a special emphasis on the reasons why it is appropriate and ethical to stop or avoid some treatments when a child is nearing the end of their life, and provide reassurance for families that these decisions are common.
We have focused this handbook on end-of-life discussions because of our awareness that there is little published material for parents and families on this subject. It refers particularly to decisions about intensive medical treatments, but is also relevant for children who are not currently admitted in intensive care unis. There are a number of excellent resources for families about palliative care, funeral planning, about bereavement support, and about organ donation. We provide a link to those resources at the end of the handbook for parents who would like more information on those topics.
The handbook is being published in two forms. We have written a short printed booklet that outlines a few common questions about end of life decisions. We have also developed a much longer version that is available online. The handbook is quite long. We do not expect that families will read all of the information in the longer handbook, rather that they will be able to use it to focus on those questions that they are currently facing, or are finding particularly troubling.
Both the printed and online handbook include (with permission) quotes and stories from parents who have faced end-of-life decisions, and who were interviewed by Jane Sullivan in 2010-12 as part of her PhD project "Bereaved parents' and hospital staff's reflections on decision making about end of life medical treatment for children". Names and identifying details have been changed. We have also included a summary, based on Jane's work, of how parents often think about decisions for their child.