End of Life Care in Neurological Disease

End of Life Care in Neurological Disease

David Oliver Editor End of Life Care in Neurological Disease

Editor David Oliver BSc FRCP FRCGP Wisdom Hospice Rochester Kent UK ISBN 978-0-85729-681-8 ISBN 978-0-85729-682-5 (ebook) DOI 10.1007/978-0-85729-682-5 Springer London Heidelberg New York Dordrecht Library of Congress Control Number: 2012952726 Springer-Verlag London 2013 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, speci fi cally the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on micro fi lms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. Exempted from this legal reservation are brief excerpts in connection with reviews or scholarly analysis or material supplied speci fi cally for the purpose of being entered and executed on a computer system, for exclusive use by the purchaser of the work. Duplication of this publication or parts thereof is permitted only under the provisions of the Copyright Law of the Publisher s location, in its current version, and permission for use must always be obtained from Springer. Permissions for use may be obtained through RightsLink at the Copyright Clearance Center. Violations are liable to prosecution under the respective Copyright Law. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a speci fi c statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. While the advice and information in this book are believed to be true and accurate at the date of publication, neither the authors nor the editors nor the publisher can accept any legal responsibility for any errors or omissions that may be made. The publisher makes no warranty, express or implied, with respect to the material contained herein. Printed on acid-free paper Springer is part of Springer Science+Business Media (www.springer.com)

Foreword In 2010, a group of health and social care professionals, together with representative patient organisations, met to consider the needs of people with progressive neurological disease. The meeting was established by the Department of Health and the National End of Life Care Programme, and over the next year the group produced a report entitled End of life care in long term neurological conditions a framework for implementation. The aim was to encourage health and social care professionals to start to consider end of life issues for this patient group and look at how they could collaborate for the bene fi t of patients and their families. This book has arisen from the work in producing the report. The group members have been involved in developing the sections into the chapters. We hope that the book will stimulate services to look at how they can collaborate to improve end of life care, so that the quality of life of patients and their families develop across all areas elderly care medicine, neurology, rehabilitation medicine, primary care, specialist palliative care, social care and voluntary organisations and people with neurological disease will receive the co-ordinated and excellent care they require at the end of life. I would like to thank all the authors involved in this project, those who helped in the production of the original report and the production team at Springer for all their help and enthusiasm in this project. Rochester, Kent, UK Dr. David Oliver v

Contents 1 End of Life Care.......................................... 1 Tes Smith and Eleanor Sherwen 2 End of Life Care in Neurological Disease...................... 19 David Oliver and Eli Silber 3 Communication........................................... 33 Jenny Smith, Debi Adams, and Colin W. Campbell 4 Physical Symptoms in Neurological Conditions................. 51 Mark Lee 5 Holistic Care: Psychosocial and Spiritual Aspects.............. 91 Colin W. Campbell, Barbara J. Chandler, and Sue Smith 6 Multidisciplinary Care..................................... 113 David Oliver and Sally Watson 7 Advance Care Planning.................................... 133 Simon Chapman 8 Care at the End of Life..................................... 143 Nigel P. Sykes 9 Carers................................................. 161 Cynthia Benz and Debra Chand 10 Future Developments in Care: National Strategy and Commissioning........................ 187 Claire Henry and Beverley Hopcutt 11 End of Life Care in Progressive Neurological Disease: Australia......................................... 205 Susan Mathers vii

viii Contents 12 International Aspects of Care: Europe........................ 213 Simone Veronese 13 International Aspects of Care: Africa......................... 221 Liz Gwyther 14 Conclusion............................................... 227 David Oliver Index........................................................ 231

Contributors Debi Adams, RN, B.A. (Hons) Clinical Nurse Specialist in Palliative Neurology, St. Catherine s Hospice, Scarborough, North Yorkshire, UK Cynthia Benz, BEd Hons, M.A., Ph.D. Volunteer for the Multiple Sclerosis Society, the National Council for Palliative Care and Dying Matters Coalition, UK Colin W. Campbell, MBChB, FRCGP, FRCP Medical Director and Palliative Medicine Consultant, St. Catherine s Hospice, Scarborough, North Yorkshire, UK Debra Chand, B.Sc., M.B.A. The PSP Association, Towcester, Northamptonshire, UK Barbara J. Chandler, BMedSci, M.B.B.S., M.D., FRCP Raigmore Hospital, Inverness, Scotland, UK Simon Chapman Director of Policy & Parliamentary Affairs, The National Council for Palliative Care, London, UK Liz Gwyther, MB ChB, FCFP, M.Sc., Pall Med Hospice Palliative Care Association of South Africa, Pinelands, South Africa Claire Henry, RGN, PgDip, B.Sc. National End of Life Care Programme, Leicester, Leicestershire, UK Beverley Hopcutt Therapy Service, Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK Mark Lee, MBChB, MRCP, M.D. Department of Palliative Care, St Benedict s Hospice & City Hospitals, Sunderland, Tyne and Wear, UK Susan Mathers, MB ChB, MRCP (UK), FRACP Neurology Unit, Calvary Health Care Bethlehem, Melbourne, Victoria, Australia ix

x Contributors David Oliver, B.Sc., FRCP FRCGP Consultant in Palliative Medicine, Wisdome Hospice, Rochester, Kent, UK Honorary Reader, Centre for Professional Practice, University of Kent, Chatham, Kent, UK Eleanor Sherwen, RGN, B.Sc. (Hons), Palliative Care, PG Cert ClinEd National End of Life Care Programme, Ongar, Essex, UK Eli Silber, MBBCh (Wits), FCP (Neuro) SA M.D. (Lond), FRCP Kings College Hospital, London, UK Jenny Smith, B.Sc. (Hons), MBChB MRCP Specialty Registrar in Palliative Medicine, St Gemma s Hospice, Leeds, Yorkshire, UK Sue Smith, M.Sc. Motor Neurone Disease Association, Leeds, West Yorkshire, UK Tes Smith, B.A. (Hons), M.A. Macmillan Cancer Support, Ongar, Essex, UK Nigel P. Sykes, M.A., FRCP, FRCGP St. Christopher s Hospice, London, UK Simone Veronese Department of Palliative Care, FARO Foundation, Turin, Italy Sally Watson, M.A., Ph.D. Director of Executive Education, Lancaster University Management School, Lancaster, Lancashire, UK