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New resources for professionals working with children at end of life

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Together for Short Lives has launched a brand new set of resources aimed to support professionals working in children’s palliative care with practicalities and considerations once it has been recognised that a child or young person is coming to the end of their life.

There is currently little guidance surrounding care of the child at end of life and after death, and practitioners generally adapt what is available in the wider field of literature on death and bereavement, which is often written for the world of adult palliative care. While there are many issues in common, the death of a child or young person brings with it unique challenges, medically, legally and emotionally, which should be addressed in their own right.

The End of Life Planning series aims to fill this gap in literature and guide practitioners at whatever level, in any setting, through a child’s end of life and death.

The End of Life Planning series centres around A Guide to End of Life Care, which acts as a comprehensive manual for best practice at end of life in any care setting, for example in a hospital, a children’s hospice, or in the home. It covers three main stages of care: care before death, care at the time of death, and care after death. As well as going into detail about practical considerations and medical procedures surrounding end of life, it serves as a reference for the many legal issues surrounding death and gives advice on how to approach the subject of end of life with parents. It also provides helpful information on the attitudes of various religions towards, and rituals surrounding, the end of life and care of the body after death.

As part of the series, Together for Short Lives has also produced a set of End of Life prompts which pull out the key elements from each chapter of A Guide to End of Life Care. The prompts are designed to be used in practice for easy reference to help practitioners make sure they have covered every aspect of care, with the more detailed guide being intended for more in-depth study.

Nurses have recently been given powers to verify expected death in childhood, so as part of the End of Life Planning series, Together for Short Lives has published The verification of expected death in childhood: Guidance for children’s palliative care services, giving detailed information on the process and issues surrounding this subject, with the aim of building confidence and expertise of practitioners who may not have a great deal of experience with this procedure.

We hope that healthcare professionals will find this series invaluable to their practice, and ensure all practitioners are up to date with the latest best practice and legal issues in order to provide the best possible care for children and young people at the end of their life, to support their families through this difficult time and into bereavement, and to take care of themselves as professionals taking on an extremely challenging and emotionally demanding role.

The End of Life Planning Series is available free of charge from Together for Short Lives.

Download an electronic version or order a hard copy.

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