End of life planning series A Guide to End of Life Care Care of children and young people before death, at the time of death and after death Together for Short Lives, August 2012 A Guide to End of Life Care Care of children and young people before death, Together for Short Lives is the leading UK charity that speaks for all at the time of death and after death children with life-threatening and life-limiting conditions and all those who support, love and care for them. When children are unlikely to Contents First edition © Together for Short Lives, August 2012. reach adulthood, we aim to make a lifetime of difference for them Due for review 2014. and their families. Author Registered charity in England and Wales (1144022) and a company Foreword 5 Section 3: Care at the time of death 22 Helen Bennett: Care Development Manager, Together for Short Lives limited by guarantee (7783702). 3.1 Introduction Editor Section 1: Background and context 6 3.2 Care of the family Susannah Woodhead: Communications Officer, Together for Short Lives 1.1 Introduction 3.3 Care of the child at time of death in different settings Design 1.2 Background 3.4 Legal issues Qube Design Associates 1.3 How to use this guide • Expected and unexpected death • Aims of the guide Consultation group • Verification of death • Sections of the guide Catherine Pickering: Head of care service development, Rainbow Trust • Notification Children’s Charity Together for Short Lives 1.4 End of life planning prompt sheets • Child Death Overview Panel (CDOP) 4th Floor, 48-52 Bridge House, Francis Edwards: Paediatric palliative care liaison nurse, The Bristol Baldwin Street, Bristol BS1 1QB Section 2: Care before death 10 • The role of the coroner or procurator fiscal Royal Hospital for Children. T: 0117 989 7820 • Post mortems 2.1 Introduction Gill Wilson: CNS Advancing practice and development, Demelza [email protected] • Certification of death Hospice Care for Children www.togetherforshortlives.org.uk 2.2 Care of the family • Registration 2.3 Spirituality, faith and cultural care Julia Hodgson: Projects manager, Together for Short Lives Disclaimer • Spirituality Katrina McNamara: Director of practice and service development, While great care has been taken care to ensure that the contents of • Ethnicity, culture and religion Together for Short Lives this document are correct and up to date at the time of publishing, • Death and dying in world religions neither its authors nor its publishers can guarantee its correctness Rachel Black: Head of clinical education and development, Demelza and completeness. The information contained in the document is 2.4 Communication Hospice Care for Children intended for general use only and users should take appropriate • Talking with children Sally Le Masurier: Community palliative care nurse, The Children’s Trust steps to verify such information and as necessary obtain legal and/ • Difficult conversations or professional advice. None of the authors or the publishers accept • Sharing significant news Acknowledgements responsibility for any loss, damage or expense resulting from the use This guide would not have been possible without support and feedback of this information and no actions should be taken in reliance on it 2.5 Advance Care Planning (ACP) from a number of people. We are grateful to all those who commented without relevant professional advice. 2.6 Organ and tissue donation on various drafts for their contribution and direction, and to all those 2.7 Symptom management planning who shared their practice experience of caring for a child at the end of life and after death. The End of life planning series including A Guide to End of Life Care has been made possible by funding from The Samuel Sebba Charitable Trust, The St James’s Place Foundation and Michael Cornish Charitable Trust. A Guide to End of Life Care has been adapted from Care of the Child after Death (Children’s Hospices UK 2011). Note: Throughout this document the term ‘child’ is used to mean child, neonates, babies and young people. The term ‘family’ acknowledges the diverse relationships within a family including the role of the carer whoever that may be. 2 A Guide to End of Life Care 3 Contents Foreword Section 4: Care after death 32 Section 6: Staff support and supervision 50 4.1 Introduction 6.1 Introduction There can be few greater tragedies for a family than the death of their child. 4.2 Care of the family 6.2 Training and professional development The circumstances surrounding their child’s death can have huge impact on 4.3 Transferring the child to a funeral directors family members and can imprint memories which may last a lifetime. or a cool room Section 7: Resources and Appendices 54 4.4 Funeral directors 7.1 Further resources We live in a culture and at a time in which common practise 4.5 Personal care of the child after death 7.2 Glossary of terms has often caused families to lose control over the way things • Ongoing care of the body 7.3 References are done at this crucial time. They may already have felt 4.6 Cool rooms in children’s hospices 7.4 Related legislation helpless in the face of illness or accident, powerless to stop the relentless course of events resulting in death and now they • Accessibility of the cool room 7.5 Appendix 1: Checklist of practical tasks desperately need to be given back some degree of control. • Setting up a cool room to complete at the time of death and following death • Length of time in the cool room A Guide to End of Life Care gives those of us who are 4.7 Placing the child in the coffin 7.6 Appendix 2: Outline of learning privileged to be alongside families around the time of the and competence for staff 4.8 Further support death of their children an invaluable resource. It enables us 4.9 Moving the body and repatriation to comply with necessary legislation while always acting with compassion and sensitivity, recognising the unique needs 4.10 Cremation and attributes of each family member. If we listen, if we gently 4.11 Burial encourage them to take control around the time of death and in the days that follow, if we are around to support them and Section 5: Bereavement support 46 to encourage them to do things their way, we may well lay the first stepping stones through the flood of grief which follows 5.1 Introduction the death of a beloved child. 5.2 Immediate support 5.3 Collecting memories 5.4 Preparation for the funeral or service 5.5 Ongoing support 5.5 Further resources Sister Frances Dominica, OBE DL FRCN FRCPCH Vice President, Together for Short Lives 4 A Guide to End of Life Care Foreword 5 1.1 Introduction Section 1 Over the past few years a number of bereavement. This guidance should be read alongside recent publications from the Department of Health, resources have been developed to support Quality Standards for End of Life Care1, Guidance for Staff professionals working in children’s Responsible for Care after Death2 and When a Person Dies3, palliative care. These documents aimed all of which offer comprehensive guidance to support best Background practice. to identify, promote and extend best practice, enhancing the quality of care In addition the material contained in this document supports practice in line with the principles and standards set out for children and young people with life- by national guidance and by Together for Short Lives. It and context threatening and life-limiting conditions, encompasses the legal requirements and standards of care set out by external regulators including Healthcare and their families. Improvement Scotland, the Regulation and Quality Improvement Authority (Northern Ireland) the Care Quality A Guide to End of Life Care builds on previous work of ACT Commission (England), Healthcare Inspectorate Wales and and Children’s Hospices UK (the two charities that merged Local Safeguarding Boards (England and Wales). to form Together for Short Lives in October 2011) and draws together many resources around end of life care, including Integral to this guidance are key principles of practice Care of the Child after Death (Children’s Hospices UK 2011). that underpin a learning framework to help develop the This new resource is part of an End of life planning series knowledge and skills of staff who work with families at such and provides information and recommendations for end of an intensely emotional time. 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. It includes sections on the use and practice of the cool room, communication, Advance Care Planning and symptom management at the end of life. There remains little evidence or guidance surrounding care of the child at the end of life and after death. Much of our evidence base is drawn from a consensus of professional practice and from the wider field of literature on death and 1. NICE (2011) 2. National End of Life Care Programme (2011)a 3. National End of Life Care Programme (2011)b 6 A Guide to End of Life Care Secrion 1 - Background and context 7 This guide is written for all practitioners working with 1.3 How to use this guide The main sections of the A Guide to End of Life Care are: Each of the sections highlights a number of good practice children at end of life and this information aims to support Care before death highlights the essential components of points, as well as reflective questions to enhance learning professionals in making sense of the complexities care in relation to planning, alongside the importance of the and to encourage reflective practice.