Children’s Palliative Care in Africa Edited by Dr Justin Amery Supported by The Diana, Princess of Wales Memorial Fund 1 1 Great Clarendon Street, Oxford OX2 6DP Oxford University Press is a department of the University of Oxford. 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The authors and the publishers do not accept responsibility or legal liability for any errors in the text or for the misuse or misapplication of material in this work. Except where otherwise stated, drug dosages and recommendations are for the non-pregnant adult who is not breastfeeding. There can be no keener revelation of a society’s soul than the way in which it treats its children. Nelson Mandela This book is dedicated to my wonderful family: Karen, Mikey, Mair, Rhiannon, Florence and Tende Foreword by Elton John In 1990, an 18-year-old American haemophiliac named Ryan White died of an AIDS-related illness. He had been diagnosed with HIV aged 11. At the time, AIDS was seen as a deeply stig- matised ‘gay disease’. Ryan and his family were regularly subjected to abuse and excluded from community life. Their astounding acceptance, even forgiveness of this treatment was truly hum- bling. Because of Ryan, I realised there was so much more I could and should be doing in the fight against AIDS and this was the inspiration behind establishing The Elton John AIDS Foundation. We have come a long way since then. Ryan White became a national icon in America and the Ryan White Care Act is still responsible for the largest number of HIV/AIDS programmes in the USA. My Foundation has become one of the twenty largest HIV/AIDS charities in the world. Last year alone, we supported nearly 30,000 children to go on antiretroviral treatment. If Ryan were sick today, we would know so much more about how to help him – medically and emotionally. However, we still could not ‘cure’ Ryan’s HIV/AIDS and that is why this book is so important. Of course health promotion, disease prevention and curative approaches remain our goal, but this cannot be at the expense of palliative care. Indeed in my view, the two are largely insepa- rable, and the need is truly mind-boggling. Worldwide, nearly 11 million under-fives are dying every year. Most of them are living in developing countries, with more than four million of these deaths in sub-Saharan Africa, where child mortality rates are running at an average rate of 172 deaths per 1,000 babies born (compared with 9 per 1,000 in developed regions). For many economic, political, cultural and sociological reasons, palliation and symptom relief remain the only realistic treatment options for the majority of these children. Our duty is to make sure it is as good as it can be. One of the things Ryan’s illness taught me is that sick children are not simply ‘small sick adults’, and children’s palliative care needs to reflect this. Helping very sick or dying children to understand what is happening to them, and working with them to overcome the physical, psychological, social and spiritual challenges that come with impending death, is achievable, easily affordable, and highly rewarding even in the poorest settings with the least resources. However, to practice children’s palliative care, health workers do need to gain some additional knowledge, skills, support and confidence. Unfortunately, in resource-poor settings, it is very rare for health workers to receive any training in children’s palliative care. Research has shown that, not surprisingly, health workers feel particularly lacking in confidence and competence in children’s palliative care and tend to avoid these issues in practice – to the significant detriment of children who continue to suffer needlessly as a result. However, the research also suggests that health professionals in Africa (and across the world) see a great need for children’s palliative care, highly value further training in it and find it extremely rewarding, empowering and satisfying when they try it for themselves. x FOREWORD BY ELTON JOHN For these reasons I applaud the publication of this book, which sets out with understanding and tenderness the specific palliative care needs of children. It can support thousands of health workers to better care for children for whom there is no immediate cure; can give them pride and clarity in their role and can make life better for millions of children around the world. Ryan would have approved. Contents The authors xiii Acknowledgements xix List of abbreviations xxi 1 Introduction 1 Section 1: The basics of children’s palliative care 2 Communicating with children and their families 11 Justin Amery, Gillian Chowns, Julia Downing, Eunice Garanganga, Linda Ganca and Susie Lapwood 3 Play and development 37 Sue Boucher and Justin Amery 4 Assessment and management planning 79 Caroline Rose and Justin Amery Section 2: Symptom control in children’s palliative care 5 Pain 97 Justin Amery, Michelle Meiring, Renee Albertyn and Sat Jassal 6 Respiratory symptoms 125 Justin Amery and Michelle Meiring 7 Feeding and hydration problems 133 Justin Amery 8 Gastrointestinal symptoms 155 Justin Amery, Michelle Meiring and Caroline Rose 9 Neurological symptoms 171 Justin Amery, Susie Lapwood and Michelle Meiring 10 Skin problems 189 Justin Amery and Michelle Meiring 11 Urinary symptoms 201 Justin Amery and Michelle Meiring 12 HIV/AIDS 207 Justin Amery, Jenny Sengooba, Ivy Kasiyre and Michelle Meiring Section 3: Holistic care 13 Psychosocial and family care 227 Justin Amery, Nkosazana Ngidi, Caroline Rose, Collette Cunningham, Carla Horne and Linda Ganca xii CONTENTS 14 Pre-bereavement and bereavement 249 Justin Amery, Collette Cunningham, Nkosazana Ngidi, Eunice Garanganga, Carla Horne and Jenny Ssengooba 15 Spirituality 271 Justin Amery, Eunice Garanganga and Carla Horne 16 Palliative care for adolescents 289 Justin Amery, Julia Downing and Collette Cunningham 17 Ethics and law 305 Justin Amery, Joan Marston and Nkosazana Ngidi Section 4: Bringing it all together – caring at the end of life 18 Caring for children at the end of life 327 Michelle Meiring and Justin Amery Section 5: Caring for yourself 19 Caring for yourself 351 Justin Amery, Mary Bunn, Susie Lapwood and Gillian Chowns Section 6: Children’s palliative care formulary for Africa 20 Formulary 377 Justin Amery and Sat Jassal Further reading 411 Index 415 The authors Renee Albertyn is a researcher in the department of Paediatric Surgery at the Red Cross Children’s Hospital in Cape Town, South Africa. In addition, she is also clinically involved in the Pain Management Unit of hospital. In 2002, Renee obtained her PhD degree from the University of Cape Town Medical School in Pain Management and Assessment Strategies. She developed a Burn Pain and Anxiety Scale for children (BOPAS), which led to her PhD degree. Renee is involved in ongoing research and conducts weekly lectures on hospital palliative care to medical students. She regularly gives talks on her subject both locally and abroad. Renee has extensive experience and vast knowledge on the evaluation, assessment and management of pain in children. Justin Amery was Medical Director at Helen House (the world’s first children’s hospice) from 1995 until 2005. He also helped design and develop one of the world’s first hospices for young adults, Douglas House, where he was founding Medical Director. In 2006, he moved to Hospice Africa Uganda where he took over as Clinical Director, setting up a new Children’s Palliative Care service, coordinating the Distance Learning Diploma Course in Palliative Care and developing a new post-graduate certificate course in children’s palliative care. He has authored and contrib- uted widely to texts, original articles and reports in children’s palliative care. His research interest is education and training for health workers in children’s palliative care.