Perspectives on palliative care for children and young people : a global discourse PDF
Preview Perspectives on palliative care for children and young people : a global discourse
Perspectives on Palliative Care for Children and Young People Perspectives on Palliative Care for Children and Young People A GLOBAL DISCOURSE Edited by RITA PFUND Lecturer in Child Health Division of Nursing, Midwifery and Physiotherapy University of Nottingham and SUSAN FOWLER-K ERRY Full Professor College of Nursing University of Saskatchewan Foreword by SISTER FRANCES DOMINICA Founding Trustee Helen and Douglas House Hospice Care for Children and Young Adults, Oxford Radcliff e Publishing Oxford • New York Radcliff e Publishing Ltd 18 Marcham Road Abingdon Oxon OX14 1AA United Kingdom www.radcliff e-o xford.com Electronic catalogue and worldwide online ordering facility. © 2010 Rita Pfund and Susan Fowler- Kerry Rita Pfund and Susan Fowler- Kerry have asserted their right under the Copyright, Designs and Patents Act 1998 to be identifi ed as the authors of this work. 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, without the prior permission of the copyright owner. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library. ISBN- 13: 978 184619 333 0 Th e paper used for the text pages of this book is FSC certifi ed. FSC (Th e Forest Stewardship Council) is an international network to promote responsible management of the world’s forests. Typeset by Pindar NZ, Auckland, New Zealand Printed and bound by TJI Digital, Padstow, Cornwall, UK Contents Foreword ix Preface xi About the editors xii List of contributors xiii Acknowledgements xix Introducing our discourse 1 Rita Pfund Section 1: A global overview Section introduction 9 Susan Fowler- Kerry 1 Paediatric palliative care as a basic human right 11 Frank Brennan 2 The International Children’s Palliative Care Network (ICPCN): a global overview 27 Lizzie Chambers, Sue Boucher, Julia Downing, Faith Mwangi- Powell and Sabine Kraft 3 Organisation of care in the UK 42 Jo Rooney 4 Organisation of care in Romania 56 Kirsteen Cowling 5 Organisation of care in Uganda 69 Lou Millington 6 Organisation of care in South Africa 85 Joan Marston Section 2: Focusing on families: hearing the evidence Section introduction 97 Susan Fowler- Kerry 7 A research perspective: narrative research 99 Sheila Greatrex- White 8 Part 1: ‘Where’s my sitcom?’ The young adult’s voice 115 Greg Wilford Part 2: Commentary on the young adult’s story 124 Mike Miller 9 Part 1: The parent’s voice 128 Anna Gill Part 2: Jamie’s continuing care domains 137 Anna Gill Part 3: Commentary on the parent’s story: the key to integrating services 145 Peter Limbrick 10 Part 1: A child’s life path 150 Gordon Martell Part 2: A philosophical perspective on a father’s tale 159 Gosia Bryckzynska 11 Hearing the voices of parents and carers 166 Bea Brunton 12 Hearing the voices of siblings 174 Sally Blower 13 Transitions within the family 181 Jacqueline Newton Section 3: Minimising crisis points in paediatric palliative care Section introduction 187 Susan Fowler- Kerry 14 Pathways in palliative care 189 Rita Pfund 15 Use of clinical practice guidelines and critical pathways 197 Linda Ferguson 16 Minimising crisis points in paediatric palliative care: the ACT care pathways in action 206 Toni Wolff and Jackie Brown Section 4: Supporting transitions Section introduction 243 Susan Fowler- Kerry 17 Transitions within acute care settings: the chaplain’s perspective 245 Paul Weeding 18 Transitions at the beginning of life: psychological support 252 Ian Woodroffe 19 Managing transitions to hospice care: the hospice consultant’s perspective 268 Mike Miller 20 Supporting transitions: effective palliative care teams 275 Stefan Friedrichsdorf, Jody Chrastek and Stacy Remke Section 5: Evidence/knowledge transfer into practice Section introduction 291 Susan Fowler- Kerry 21 Knowledge transfer within the general paediatric setting 293 Paula Dawson 22 Supporting learning in paediatric palliative care 299 Joanne Griffi ths and Rita Pfund 23 The path to excellence 314 Rita Pfund Index 323 Foreword Two decades ago the term ‘paediatric palliative care’ was not in general use. A few families could recount isolated instances of exceptional support through the illness and death of their child. Th ey usually attributed this to the sensitivity and genuine humanity of one healthcare professional. Joined-u p working in this fi eld was scarcely dreamed of. In what is arguably the worst tragedy to befall anyone, at the centre of it all, so many families felt abandoned. Exhausted with grief, they had to fi ght for the rights of their children and the rest of the family. If it was bad during the children’s lifetime, it was so much worse aft er they had died. In recent years we have made quantum leaps in developing paediatric palliative care but we can never be complacent. We are always on a steep learning curve, not least because each sick child or young person is a unique individual and his or her family knows their son or daughter better than anyone else in the world. We have so much to learn from them and it is only when we have built a relationship of trust with them that we shall be able to make a meaningful contribution to their well- being. I hope this book will come to the attention of those healthcare professionals who are privileged to be working with these families. It contains so much wisdom and practical common sense and, most importantly, we hear the words of the children, young people and their families – the real experts. We are confronted on every side by constraints of funding and cut-b acks in resources, but we should never let that prevent us from journeying with these families as fellow human beings, for however short a part of that journey, using whatever skills we have to relieve a little of their distress. Nearly 30 years ago, when we were recruiting a team to work in Helen House, the children’s hospice in Oxford, I had a mental checklist I used at interviews. Did this person seem to be a fully paid-u p card-c arrying member of the human race? Did he or she seem to have an abundance of common sense, compassion and a good sense of humour? Would they feel safe to cry as well as laugh? Was this person going to be a team player, prepared to take appropriate risks, comfortable with him- or herself, with a life beyond work? And then on a good day I would remember to ask about qualifi ca- tions and experience! Despite the red tape with which we are surrounded today, I still believe those qualities are vital. ix
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