A REALLY PRACTICAL Handbook Of

MEDICINE A Really Practical Handbook of Children’s Palliative Care for Doctors and Nurses Anywhere in the World o ers really practical solutions to common A REALLY PRACTICAL HANDBOOK OF problems faced by health professionals caring for dying children and CHILDREN’S PALLIATIVE CARE their families, whatever their culture or socioeconomic circumstance. After spending more than twenty years caring for children with terminal diagnoses, Dr. Justin Amery has applied his hands-on experience and the fruits of his research to this compendium of practical advice. The book’s fteen parts address not only the numerous practical matters A Really that arise in o ering palliative care to children, but also the intangible, yet vital, practices for communicating bad news, helping families with their emotional reactions, assisting children and their families with PRACTICAL ethical and spiritual issues, and working with surviving family members as they grieve. HANDBOOK of The volume also includes, as an additional resource, the Association of Paediatric Palliative Medicine Formulary. O ered at no charge as an e-book and at cost in its printed form, A Really Practical Handbook of Children’s Palliative Care Children’s Palliative Care for Doctors and Nurses Anywhere in the World presents the essentials for medical professionals who need to offer for Doctors and Nurses compassionate and competent care to children and their families. Anywhere in the World Justin Amery, a British physician, working with children all over the world, has specialised for more than two decades in providing children JUSTIN AMERY with palliative care. He also has conducted research advancing paediatric JUSTIN AMERY palliative care. His writing, teaching, and training focus on helping others apply his ndings to their practises. A Really PRACTICAL HANDBOOK of Children’s Palliative Care for Doctors and Nurses Anywhere in the World JUSTIN AMERY And INCLUDING (By kind permission of Dr. Sat Jassal) The APPM Master Formulary 2015 Copyright © 2016 Justin Amery. All rights reserved. No part of this book may be reproduced, stored, or transmitted by any means—whether auditory, graphic, mechanical, or electronic—without written permission of both publisher and author, except in the case of brief excerpts used in critical articles and reviews. Unauthorized reproduction of any part of this work is illegal and is punishable by law. The information, ideas, and suggestions in this book are not intended as a substitute for professional medical advice. Before following any suggestions contained in this book, you should consult your personal physician. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising as a consequence of your use or application of any information or suggestions in this book. ISBN: 978-1-4834-4402-4 (sc) ISBN: 978-1-4834-4403-1 (e) Library of Congress Control Number: 2015921132 Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them. Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only. Certain stock imagery © Thinkstock. Lulu Publishing Services rev. date: 02/19/2016 Contents A Word of Thanks ...........................................................................................ix Foreword ...........................................................................................................xi Contributors ....................................................................................................xiii How to use this book ....................................................................................xxi Part one: How do I communicate with children and their families? ....... 1 Part two: How do I break bad news to children and their families? ....... 9 Part three: How do I handle strong emotions and difficult questions? 17 Part four: How do I assess and manage all the needs of a child and their family? ...................................................................................22 Part five: How do I manage children with HIV&AIDS in CPC? .........30 Part six: How do I manage symptoms in children’s palliative care? ......44 How do I assess pain and distress in children? .....................44 How do I manage pain in children? ........................................49 How do I manage fluids and electrolytes in children? ......... 61 How do I manage feeding problems in children? .................64 How do I manage sore mouth in children? ...........................67 How do I manage dysphagia in children? ..............................69 How do I manage gastro-oesophageal reflux ........................72 How do I manage gastro-intestinal bleeding in children? ... 74 How do I manage nausea and vomiting in children? ...........77 How do I manage constipation in children? ..........................83 How do I manage diarrhoea in children? ...............................87 How do I manage cough in children? .....................................90 How do I manage haemoptysis in children? ..........................93 How do I manage breathlessness in children? .......................96 How do I manage seizures in children? ................................100 How do I manage spasticity and dystonia in children? ...... 103 How do I manage skin problems in CPC? ...........................108 How do I manage anxiety in children? ................................. 119 Part seven: How do I manage acute, distressing terminal symptoms at the end of life? .......................................................................123 A practical approach to treating any acute, distressing terminal event in CPC: ........................................128 How do I manage restlessness and agitation at the end of life? ......................................................................129 How do I manage massive bleeding at the end of life? ......129 How do I manage acute severe upper airway obstruction (choking) at the end of life?...............................130 How do I manage noisy secretions (“death rattle”) at the end of life? ........................................................ 131 Part eight: How do I play with children? ..................................................133 Part nine: How do I provide palliative care for adolescents? ................ 141 Part ten: How do I deal with ethical dilemmas in children’s palliative care? .............................................................................150 Part eleven: How do I offer spiritual care to families? ...........................157 Part twelve: How do I provide good end of life care to a child and their family? .................................................................................163 Part thirteen: How do I deal with the practicalities arising after the death of a child? ............................................................................ 174 Part fourteen: How do I help the family with grief and bereavement? .... 179 Part fifteen: How do I survive and thrive in children’s palliative care? ...............................................................................................187 APPM Formulary .........................................................................................197 Appendices .....................................................................................................343 Appendix 1: Morphine equivalence single dose [1, 2, 5] ....343 Appendix 2: Subcutaneous infusion drug compatibility ....344 Appendix 3: Template Symptom Management Plan ..........345 Pain Management Plan Template ...........................................346 Nausea and Vomiting Management Plan Template ............348 Seizure Management Plan Template .....................................350 Acute Breathlessness Management Plan Template .............353 Excessive Respiratory Secretions Management Plan Template ....................................................356 Severe Bleeding Management Plan Template ......................359 Muscle Spasm (Dystonia) Management Plan Template .....362 Mouth Pain Management Plan Template .............................365 Spinal Cord Compression Management Plan Template .....368 Agitation, Restlessness, Delirium and Anxiety Management Plan Template ....................................371 Constipation Management Plan Template............................373 Formulary References ..................................................................................375 Practical Handbook References..................................................................401 Main Index .....................................................................................................409 Formulary Index ........................................................................................... 415 Drug Index .....................................................................................................421 A Word of Thanks I would like to thank the following organisations without whom we would not have been able to publish this book for free. • Keech Hospice (www.keech.org.uk) who have provided me with logistical, psychological and material support, as well as giving me the freedom to work on the book as part of my commitment

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