P1: SFK/XXX P2: SFK BLBK147-Stevens February 12, 2009 6:59 Palliative Nursing Across the Spectrum of Care Edited by Elaine Stevens Susan Jackson Stuart Milligan A John Wiley & Sons, Ltd., Publication iii P1: SFK/XXX P2: SFK BLBK147-Stevens February 12, 2009 6:59 Palliative Nursing i P1: SFK/XXX P2: SFK BLBK147-Stevens February 12, 2009 6:59 ii P1: SFK/XXX P2: SFK BLBK147-Stevens February 12, 2009 6:59 Palliative Nursing Across the Spectrum of Care Edited by Elaine Stevens Susan Jackson Stuart Milligan A John Wiley & Sons, Ltd., Publication iii P1: SFK/XXX P2: SFK BLBK147-Stevens February 12, 2009 6:59 This edition first published 2009 C 2009 by Blackwell Publishing Ltd Blackwell Publishing was acquired by John Wiley & Sons in February 2007. Blackwell’s publishing programme has been merged with Wiley’s global Scientific, Technical, and Medical business to form Wiley-Blackwell. Registered office John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex, PO19 8SQ, United Kingdom Editorial offices 9600 Garsington Road, Oxford, OX4 2DQ, United Kingdom 2121 State Avenue, Ames, Iowa 50014-8300, USA For details of our global editorial offices, for customer services and for information about how to apply for permission to reuse the copyright material in this book please see our website at www.wiley.com/wiley-blackwell. The right of the author to be identified as the author of this work has been asserted in accordance with the Copyright, Designs and Patents Act 1988. 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, electronic, mechanical, photocopying, recording or otherwise, except as permitted by the UK Copyright, Designs and Patents Act 1988, without the prior permission of the publisher. Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books. Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. Library of Congress Cataloging-in-Publication Data Palliative nursing : across the spectrum of care / edited by Elaine Stevens, Susan Jackson, Stuart Milligan. p.;cm. Includes bibliographical references and index. ISBN 978-1-4051-6997-4 (pbk. : alk. paper) 1. Palliative treatment. 2. Terminal care. 3. Nursing. I. Stevens, Elaine M., 1960- II. Jackson, Susan. III. Milligan, Stuart. [DNLM: 1. Nursing Care–methods. 2. Palliative Care–methods. 3. Nursing Care–trends. WY 152 P1674 2009] RT87.T45P41 2009 616’.029–dc22 2008039844 A catalogue record for this book is available from the British Library. Set in 10/12.5pt Palatino by AptaraR Inc., New Delhi, India Printed in Malaysia 1 2009 iv P1: SFK/XXX P2: SFK BLBK147-Stevens February 12, 2009 6:59 Contents Contributors viii Foreword xiv Introduction xvii PART ONE ADULT PALLIATIVE CARE Section One History and Ethos of Palliative Care 1 The history of palliative care 5 Stuart Milligan and Shirley Potts 2 Definitions and aims of palliative care 17 Elaine Stevens 3 Providing palliative care for marginalised and disenfranchised people 35 John Atkinson Section Two Palliative Nursing Across Care Settings 4 Palliative nursing care in the acute hospital 53 Philip Saltmarsh 5 Palliative nursing care in the community 72 Wendy Wesson 6 Palliative nursing care in nursing and residential care homes 86 Carol Komaromy 7 Palliative nursing care in hospices 99 Helen de Renzie-Brett and Denise Heals v P1: SFK/XXX P2: SFK BLBK147-Stevens February 12, 2009 6:59 vi Contents Section Three Palliative Nursing Care for People with Specific Illnesses 8 Palliative nursing care in heart failure 115 Margaret Kendall 9 Palliative care in chronic obstructive pulmonary disease 125 Sarah Russell and Vikki Knowles 10 Palliative care for people who have dementia 142 Stephen D. M. Smith 11 Palliative nursing care in other neurological conditions 156 Huntington’s disease 156 Anne Thomson Motor neurone disease 164 Carole Ferguson Multiple sclerosis 175 Richard Warner Parkinson’s disease 181 George Kernohan, Felicity Hasson and Dorothy Hardyway 12 Palliative care for people with end stage renal disease 204 Helen Noble 13 Palliative care issues for people with cancer 220 Susan Jackson 14 Palliative nursing care for people with human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) 241 May McCreaddie PART TWO PALLIATIVE CARE FOR CHILDREN AND YOUNG PEOPLE 15 The history and ethos of palliative care for children and young people 257 Shirley Potts 16 Challenges of providing paediatric palliative care in the hospital setting 269 Jane Belmore 17 Children’s palliative care in the hospice and the community 277 Elizabeth-Anne (Libby) Gold PART THREE EDUCATION AND RESEARCH 18 Palliative nursing education and continuing professional development 291 Elaine Stevens P1: SFK/XXX P2: SFK BLBK147-Stevens February 12, 2009 6:59 Contents vii 19 Palliative care research 312 Stuart Milligan Index 325 P1: SFK/XXX P2: SFK BLBK147-Stevens February 12, 2009 6:59 Contributors John Atkinson is a community nurse by background. Originally from London he has lived and worked in Scotland since 1984, achieving all of his higher education during that time. His work has mainly been with marginalised peo- ple: the homeless, people with HIV, prisoners and those with drugs problems. Before coming into academic life he was Health Care Manager at HM Prison Barlinnie. Since 1999. he has worked at the University of Paisley (now the Uni- versity of the West of Scotland) as a Senior Lecturer and now Professor and Associate Dean for Research and Commercialisation. He has published widely including a collaborative venture with other academics Interdisciplinary Research: Diverse Approaches in Science, Technology, Health and Society published by Wiley in 2006. Jane Belmore has worked in paediatric oncology for the past 20 years in the Royal Hospital for Sick Children, Glasgow. She was appointed as the first pae- diatric Macmillan nurse in Scotland in 1995 and now works as a paediatric oncology outreach nurse specialist. Jane was the recipient of a Florence Nightin- gale scholarship in 1998 and visited North America and Canada looking at their paediatric oncology services. Jane is a member of RCN paediatric on- cology outreach nurses’ group, a member of the steering committee for the MCN for children and young people’s services in Scotland and a member of the recently formed Scottish children and young people’s palliative care network. Helen de Renzie-Brett qualified as a registered nurse in 1985 and spent much of her early nursing career working with older people both within the hospital and community environments. Since 1993, she has been involved in education and staff development, with experience of planning and delivering programmes within a range of settings including the NHS, Higher Education and the inde- pendent sector. Helen is currently the Head of Education at Dorothy House Hospice Care. Her particular areas of interest include older people and end of life care, practice development and staff development. Helen is a member of the RCN and education, research and older people forums. viii P1: SFK/XXX P2: SFK BLBK147-Stevens February 12, 2009 6:59 Contributors ix Carole Ferguson trained as a general nurse in the mid 1970s and then as a midwife. She specialised in genetics then health visiting. Working in genetics again in the early 1990s Carole learned about Motor Neurone Disease (MND), in 1994 changed career path to work with MND patients their families and carers. Carole has now worked with MND patients and their families for 14 years, closely associated with the Scottish Motor Neurone Disease that has funded the post since its inception in 1983. During this period Carole has gained a wealth of knowledge not only of MND but also of the importance of good palliative care. Carole is a member of the Royal College of Nursing. Elizabeth-Anne Gold, (Libby) is from Children’s Hospice Association Scotland (CHAS); she is Director of Care at Robin House Children’s Hospice. She has been working at CHAS since Rachel House opened in 1996. Robin House is Scotland’s second children’s hospice and opened in 2005. Libby qualified as a children’s nurse in 1986 and a general nurse in 1987. She worked in adult medical nursing for a number of years and during this time gained a Post Graduate Diploma in Palliative Nursing Care. In 2005 she completed a Masters Degree in Nursing. Libby is a member of the Royal College of Nursing. Dorothy Hardyway qualified as a registered nurse in the Belfast City Hospital in 1979 and her career has involved experience in hospital, community and also working in the voluntary sector, in posts throughout the UK and New Zealand. She was appointed to her present post of Parkinson’s Disease Nurse Specialist with the remit of palliative care in 2007. This is a new role and she has been employed by Northern Ireland Hospice to identify the palliative care needs of people with Parkinson’s disease, and to establish a service which will recognise and support the palliative care needs of these people and their carers throughout the disease trajectory. Felicity Hasson is Senior Lecturer in the Institute of Nursing Research at the University of Ulster.