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Palliative Care in Amyotrophic Lateral Sclerosis: from Diagnosis to Bereavement, 2Nd Edn, Pp Palliative Care in Amyotrophic Lateral Sclerosis From Diagnosis to Bereavement THIRD EDITION Edited by David Oliver Consultant in Palliative Medicine Wisdom Hospice, Rochester and Honorary Reader University of Kent, UK Gian Domenico Borasio Chair in Palliative Medicine Director, Palliative Care Service Centre Hospitalier Universitaire Vaudois University of Lausanne, Switzerland Wendy Johnston Professor of Neurology Director, ALS Programme University of Alberta, Canada 1 1 Great Clarendon Street, Oxford, OX2 6DP, United Kingdom Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and in certain other countries © Oxford University Press 2014 The moral rights of the authors have been asserted Second Edition published in 2006 9780199212934 HB 9780198570486 PB First Edition published in 2000 9780192631664 Impression: 1 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by licence or under terms agreed with the appropriate reprographics rights organization. Enquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above You must not circulate this work in any other form and you must impose this same condition on any acquirer Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016, United States of America British Library Cataloguing in Publication Data Data available Library of Congress Control Number: 2013950545 ISBN 978–0–19–968602–5 Printed and bound by CPI Group (UK) Ltd, Croydon, CR0 4YY Oxford University Press makes no representation, express or implied, that the drug dosages in this book are correct. Readers must therefore always check the product information and clinical procedures with the most up-to-date published product information and data sheets provided by the manufacturers and the most recent codes of conduct and safety regulations. 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 breast-feeding Links to third party websites are provided by Oxford in good faith and for information only. Oxford disclaims any responsibility for the materials contained in any third party website referenced in this work. Preface Although there is increasing understanding of the genetic basis of amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) and the basic science of the disease, currently available treatments offer only a modest increase in life expectancy. Therefore, a palliative approach to caring for the patient and their family is at the centre of good clinical practice in ALS. This book considers the various aspects of palliative care for patients with ALS, based on the most recent research in the field. This edition has been updated to include research and publications from the past 7 years, as well as new chapters on complementary medicine and family experience. All contributors are clinicians involved in the care of people with ALS who provide clear guidelines of the care involved throughout the disease process, from imparting the diagnosis to bereavement. The international authorship allows a comparison of the differences across cultures, social circumstances, healthcare systems, and nations. The palliative approach to the care in ALS is outlined and the role of the multidisciplinary team emphasized. This book adopts an evidence-based approach, grounded in the day to day care of patients. A short case history starts all chapters, focusing the reader on the clinical appli- cation of the research to be discussed. The authors aim to provide a reference for all involved in the care of patients with ALS, including neurologists, primary-care physicians, rehabilitation special- ists, allied health professionals, and particularly multidisciplinary palliative care teams. The care of a person with ALS, and their family, is often a challenge, but one that all should take up so that patients can live their lives as fully as possible. Throughout the book the term ‘amyotrophic lateral sclerosis’ (ALS) has been used rather than ‘motor neuron disease’, as the name ALS is recognized internationally. We would like to thank all involved in the production of this volume, especially Caroline Smith from Oxford University Press, Professor Declan Walsh, who was a co-editor of the first and second editions, and all our colleagues who have helped us with comments and suggestions throughout the publication process. DJO, Rochester, UK GDB, Lausanne, Switzerland WJ, Edmonton, Canada June 2013 Contents List of abbreviations vii List of contributors ix 1 Amyotrophic lateral sclerosis/motor neuron disease 1 Christopher E. Shaw, Annika Quinn, and Emma Daniel 2 Palliative care 21 David Oliver 3 Communication: breaking the news 33 Richard Sloan and Gian Domenico Borasio 4 Decision-making 49 Wendy Johnston 5 Advance directives 59 Gian Domenico Borasio and Raymond Voltz 6 Respiratory complications 65 Deborah Gelinas 7 Control of symptoms: dysphagia 91 Edith Wagner-Sonntag 8 Control of symptoms: cognitive dysfunction 107 Laura H. Goldstein 9 Pain, psychological distress, and other symptoms 127 David Oliver, Gian Domenico Borasio, and Wendy Johnston 10 Psychosocial care 145 Sue Smith and Maria Wasner 11 Spiritual care 171 Robert Lambert 12 Multidisciplinary care: physiotherapy 187 Ulrike Hammerbeck and Emily Jay 13 Multidisciplinary care: occupational therapy 203 Chris Kingsnorth and Sarah Lavender 14 Multidisciplinary care: speech and language therapy 215 Amanda Scott and Maryanne McPhee vi CONTENTS 15 Multidisciplinary care: nursing care 233 Dallas A. Forshew 16 Complementary and alternative medicine 245 Gregory T. Carter, Sunil Kumar Aggarwal, Michael Weiss, and Richard S. Bedlack 17 End-of-life care: ethical issues 257 Leo McCluskey, Lauren Elman, and Wendy Johnston 18 End-of-life care in ALS 277 Nigel Sykes 19 Bereavement 293 Joy Kelly 20 No time to waste: a family’s journey from diagnosis to bereavement 307 Marika Warren, Michelle Warren, and Douglas Warren Appendix: List of useful websites for ALS patients 315 Index 317 List of abbreviations AAC augmentative and alternative FUS fused in sarcoma communication FVC forced vital capacity AAN American Academy of GABA gamma-amino-butyric acid Neurology GERD gastro-oesophageal reflux AD advance directive disease AFO ankle–foot orthosis IGF insulin-like growth factor ALS amyotrophic lateral sclerosis IPPB Intermittent positive pressure ALS-bi ALS behavioural impairment breathing ALSFRS ALS Functional Rating Scale IV intravenous BDNF brain-derived neurotrophic LMN lower motor neuron factor LTMV long-term mechanical BMI body mass index ventilation bp base pair MBS modified barium swallow bvFTD behavioural variant of FTD MEP maximum expiratory pressure CAM complementary and alternative MI-E mechanical insufflator– medicine exsufflator C9orf72 chromosome 9 open reading MIP maximum inspiratory pressure frame 72 MMN multifocal motor neuropathy CCTR Cochrane Controlled Trials MNDA [UK] Motor Neurone Disease Register Association CNS central nervous system MRI magnetic resonance imaging CNTF ciliary neurotrophic factor MS multiple sclerosis CSF cerebrospinal fluid NF neurofilament DPS diaphragmatic pacing NGF nerve growth factor DVT deep venous thrombosis NICE National Institute for Health EAAT excitatory amino acid and Care Excellence transporter NIPPV non-invasive positive-pressure EAPC European Association for ventilation Palliative Care NIV non-invasive ventilation EEG electroencephalogram NSAID non-steroidal anti- EFNS European Federation of inflammatory drug Neurological Societies ODWDA Oregon Death with Dignity EMG electromyography Act EOL end of life OT occupational therapy ETRAN eye transfer communication PAD physician-assisted death board PAS physician-assisted suicide FEES fibreoptic endoscopic PCF peak cough flow evaluation of swallowing PCVGV pressure-controlled volume- FTD frontotemporal dementia guaranteed ventilation viii LIST OF ABBREVIATIONS PE pulmonary embolism SMA spinal muscular atrophy PEG percutaneous endoscopic SNIP sniff nasal inspiratory pressure gastrostomy SOD1 superoxide dismutase 1 PLS primary lateral sclerosis SSRI selective serotonin re-uptake PMA progressive muscular atrophy inhibitor PRG percutaneous radiological SVC slow vital capacity gastrostomy TENS transcutaneous electrical nerve QOL quality of life stimulation REM rapid eye movement [sleep] TV tracheostomy ventilation ROM range of movement UMN upper motor neuron SBMA spinobulbar muscular atrophy VFSS videofluoroscopic swallowing SDB sleep-disordered breathing study SLT speech and language therapist WMA World Medical Association List of contributors Sunil Kumar Aggarwal Laura H. Goldstein New York University Rusk Institute Department of Psychology, of Rehabilitation Medicine, Institute of Psychiatry, New York, NY, USA London, UK Richard S. Bedlack Ulrike Hammerbeck Duke University and Durham Institute of Neurology, VAMC, Durham, NC, USA Univesity College London, Gian
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