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The second edition of the ABC of Palliative Care extends the existing comprehensive information on physical and psychological management with two new chapters on the principles of control of cancer pain and complementary therapies. Fully updated, it now covers all the crucial aspects of care from first principles to managing the last hours of life. Chapters include: • The principles of palliative care • The principles of control of cancer pain • Difficult pain • Breathlessness, cough, and other respiratory problems • Oral health in patients with advanced disease • Anorexia, cachexia, nutrition, and fatigue • Nausea and vomiting • Constipation, diarrhoea, and intestinal obstruction • Depression, anxiety, and confusion • Emergencies • The last 48 hours • Palliative care for children • Communication • The carers • Chronic non-malignant disease • Community palliative care • Bereavement • Complementary therapies ABC OF PALLIATIVE CARE Since the first publication of this very popular ABC, the growth in knowledge of palliative care techniques and their provision means that this area has become a subspecialty in its own right. The need for health professionals to provide patient care continues to grow with ageing populations increasing the numbers of people dying of cancer and other chronic diseases. ABC OF PALLIATIVE CARE SECOND EDITION SECOND EDITION This authoritative, practical ABC will be invaluable to the increasing numbers of doctors, senior and specialist nurses, and all those health professionals who deal with cancer patients in the hospital, at home or in a hospice. Fallon, Hanks ISBN 1-4051-3079-2 9 781405 130790 ABCPalliative_final.indd 1 www.bmjbooks.com www.blackwellmedicine.com Edited by Marie Fallon and Geoffrey Hanks Foreword by Derek Doyle 3/7/06 13:40:04 ChapFM.qxd 28/6/06 11:45 AM Page i ABC OF PALLIATIVE CARE Second Edition ChapFM.qxd 28/6/06 11:45 AM Page ii ChapFM.qxd 28/6/06 11:45 AM Page iii ABC OF PALLIATIVE CARE Second Edition Edited by MARIE FALLON St Columba’s Hospice Chair of Palliative Medicine, University of Edinburgh, Edinburgh and GEOFFREY HANKS Professor of Palliative Medicine, University of Bristol, Bristol Blackwell Publishing ChapFM.qxd 28/6/06 11:45 AM Page iv © 1998 BMJ Books © 2006 by Blackwell Publishing Ltd BMJ Books is an imprint of the BMJ Publishing Group Limited, used under licence Blackwell Publishing, Inc., 350 Main Street, Malden, Massachusetts 02148-5020, USA Blackwell Publishing Ltd, 9600 Garsington Road, Oxford OX4 2DQ, UK Blackwell Publishing Asia Pty Ltd, 550 Swanston Street, Carlton, Victoria 3053, Australia The right of the Authors to be identified as the Authors 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. First published 1998 Second edition 2006 1 2006 Library of Congress Cataloging-in-Publication Data ABC of palliative care/edited by Marie Fallon and Geoffrey Hanks. — 2nd ed. p. ; cm. “BMJ Books.” Includes bibliographical references and index. ISBN-13: 978-1-4051-3079-0 (alk.paper) ISBN-10: 1-4051-3079-2 (alk.paper) 1. Palliative treatment. 2. Terminal care. I. Fallon, Marie. II. Hanks, Geoffrey W. C. [DNLM: 1. Palliative Care—methods. 2. Palliative Care—psychology. 3. Terminal Care. WB 310 A134 2006] R726.8.A23 2006 616.029—dc22 2006009883 ISBN-13: 978 1 4051 3079 0 ISBN-10: 1 4051 3079 2 A catalogue record for this title is available from the British Library Cover image is courtesy of John Cole/Science Photo Library Set in 9/11 pt by Newgen Imaging Systems (P) Ltd, Chennai, India Printed and bound in Singapore by COS Printers Pte Ltd Commissioning Editor: Eleanor Lines Development Editors: Sally Carter, Nick Morgan Senior Technical Editor: Barbara Squire Editorial Assistants: Francesca Naish, Victoria Pittman Production Controller: Debbie Wyer For further information on Blackwell Publishing, visit our website: http://www.blackwellpublishing.com The publisher’s policy is to use permanent paper from mills that operate a sustainable forestry policy, and which has been manufactured from pulp processed using acid-free and elementary chlorine-free practices. Furthermore, the publisher ensures that the text paper and cover board used have met acceptable environmental accreditation standards. Blackwell Publishing makes no representation, express or implied, that the drug dosages in this book are correct. Readers must therefore always check that any product mentioned in this publication is used in accordance with the prescribing information prepared by the manufacturers. The author 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 book. ChapFM.qxd 28/6/06 11:45 AM Page v Contents Contributors Foreword vi viii 1 The principles of palliative care Balfour Mount, Geoffrey Hanks, Lorna McGoldrick 1 2 The principles of control of cancer pain Marie Fallon, Geoffrey Hanks, Nathan Cherny 4 3 Difficult pain Lesley Colvin, Karen Forbes, Marie Fallon 8 4 Breathlessness, cough, and other respiratory problems Carol Davis, Gillian Percy 13 5 Oral health in patients with advanced disease Jeremy Bagg, Andrew Davies 17 6 Anorexia, cachexia, nutrition, and fatigue Kenneth Fearon, Matthew Barber 21 7 Nausea and vomiting Kathryn Mannix 25 8 Constipation, diarrhoea, and intestinal obstruction Nigel Sykes, Carla Ripamonti, Eduardo Bruera, Debra Gordon 29 9 Depression, anxiety, and confusion Mari Lloyd-Williams 36 10 Emergencies Stephen Falk, Colette Reid 40 11 The last 48 hours James Adam 44 12 Palliative care for children Ann Goldman 48 13 Communication David Jeffrey 52 14 The carers Julia Addington-Hall, Amanda Ramirez 56 15 Chronic non-malignant disease Marie Fallon, Joanna Chambers, Francis Dunn, Raymond Voltz, Gian Borasio, Rob George, Roger Woodruff 59 16 Community palliative care Keri Thomas 68 17 Bereavement Marilyn Relf 74 18 Complementary therapies Michelle Kohn, Jane Maher 78 Index 83 v ChapFM.qxd 28/6/06 11:45 AM Page vi Contributors James Adam Consultant in Palliative Medicine, Hunter’s Hill Marie Curie Centre, Glasgow Julia Addington-Hall Professor of End-of-Life Care, University of Southampton Jeremy Bagg Professor of Clinical Microbiology, Glasgow Dental Hospital and School, Glasgow Matthew Barber Consultant Surgeon, Edinburgh Cancer Centre, Edinburgh Gian Borasio Interdisciplinary Palliative Care Unit, Department of Neurology, Munich, Germany Eduardo Bruera Professor of Oncology, UT MD Anderson Cancer Center, Houston, Texas, USA Karen Forbes Macmillan Professorial Teaching Fellow in Palliative Medicine, Department of Palliative Medicine, Bristol Haematology and Oncology Centre, Bristol Rob George Consultant in Palliative Medicine, Meadow House Hospice, Middlesex Ann Goldman CLIC Consultant in Palliative Care, Great Ormond Street Hospital for Children, London Debra Gordon Clinical Nurse Specialist in Palliative Medicine, Western General Hospital, Edinburgh Geoffrey Hanks Professor of Palliative Medicine, University of Bristol, Bristol David Jeffrey Consultant in Palliative Medicine, Borders General Hospital, Scotland Joanna Chambers Consultant in Oncology and Palliative Medicine, Southmead Hospital, Bristol Michelle Kohn Complementary Therapy Adviser, London Nathan Cherny Director of Cancer Pain and Palliative Medicine, Share Zedek Medical Center, Jerusalem, Israel Mari Lloyd-Williams Professor, Academic Palliative and Supportive Care Studies Group, Division of Primary Care, University of Liverpool, Liverpool Lesley Colvin Consultant Anaesthetist, Department of Clinical Neurosciences, Western General Hospital, Edinburgh Lorna McGoldrick Clinical Nurse Specialist, Palliative Care, Western General Hospital, Edinburgh Andrew Davies Consultant in Palliative Medicine, Royal Marsden Hospital, London Jane Maher Consultant Oncologist, Mount Vernon Cancer Centre, Middlesex Carol Davis Consultant in Palliative Medicine, Moorgreen Hospital, Southampton Kathryn Mannix Consultant in Palliative Medicine, Marie Curie Centre, Newcastle-upon-Tyne Francis Dunn Consultant Cardiologist, Stobhill Hospital, Glasgow Balfour Mount Professor of Palliative Medicine, Department of Oncology, McGill University, Montreal, Quebec, Canada Stephen Falk Consultant in Clinical Oncology, Bristol Haematology and Oncology Centre, Bristol Gillian Percy Clinical Specialist Physiotherapist, Moorgreen Hospital, Southampton Marie Fallon St Columba’s Hospice Chair of Palliative Medicine, University of Edinburgh, Edinburgh Amanda Ramirez Professor of Liaison Psychiatry, Institute of Psychiatry, King’s College, London Kenneth Fearon Professor of Surgical Oncology, University of Edinburgh, Edinburgh Colette Reid Research Fellow in Palliative Medicine, Bristol Haematology and Oncology Centre, Bristol vi ChapFM.qxd 28/6/06 11:45 AM Page vii Contributors Marilyn Relf Head of Education, Churchill Hospital, Oxford Keri Thomas Macmillan GP facilitator, Shrewsbury Carla Ripamonti Palliative Care Physician, National Cancer Institute of Milan, Milan, Italy Raymond Voltz Consultant Neurologist, Institute for Clinical Neuroimmunology, Munich, Germany Nigel Sykes Medical Director, St Christopher’s Hospice, Sydenham, London Roger Woodruff Director of Palliative Care, Austin and Repatriation Centre, Heidelberg, Victoria, Australia vii ChapFM.qxd 28/6/06 11:45 AM Page viii Foreword It is almost impossible for a health care professional to avoid being called upon to care for people getting frailer as life ebbs away, to care for them at their dying and to have to help and support their loved ones afterwards. Who can be insensitive to their pain, their breathlessness, their weakness and their fears? Who can forget how helpless they have felt at these times, how lost for words, how unskilled and unprepared. Doctors and nurses, whether generalist or specialist, can no more avoid these professional and personal challenges than they can deny or avoid death itself. Palliative care – “the care of patients with active, progressive, advanced disease where the prognosis is short and the focus of care is the quality of life” – is a basic human right, not a luxury for the few. Its principles are not peculiar to the care of the dying but are the integral features of all good clinical care – freedom from pain and the alleviation so far as is possible, of all physical, psychosocial and spiritual suffering; the preservation of dignity; the utmost respect for honesty in all our dealings with these patients and their relatives. The emergence in 1987 of palliative care as a medical sub-specialty (mentioned in the Preface to the first edition of this book) has brought about improvements in care, research, professional education and training, and in the understanding by the public and the politicians of what needs to be done and what can be done for those at the loneliest time on their life journey. It has also had a downside. Many have come to suspect that providing palliative care requires unique people to do justice to this demanding work, unique skills to do it well, and more time than today’s doctors and nurses ever have. So easy is it to phone a palliative care specialist whether working in a hospital, a specialist unit or in the community, and get advice or an admission that some are leaving the palliative care of their patients to them. In fact only about 10% of terminally ill patients have problems so rare or so complex that specialist expertise is needed. All the others can be cared for by non-specialists if they learn the principles of palliative care, if they develop the right attitude to it, if they are willing to share themselves as well as their therapeutic skills… and if they study this book. One thing is undeniable – no-one is born with a built-in ability to provide excellent care. It has to be learnt from a book such as this, and hopefully from watching others with more experience, but that is a luxury some never have. In situations where too often the knee-jerk response can be “there is no more we can do”, the reader will find that there is always a means of helping and of caring. It may be pharmacological or psychological, nursing or physiotherapy, occupational therapy, music or art therapy, or complementary medicine. Often it may be no more, no less than enabling patients to open their hearts in that atmosphere of safety created by the doctor or nurse who has learned to be honest, and is humble enough to listen and to learn. The reader will be surprised at how richly rewarding palliative care can be; how surprisingly often terminally ill patients speak of the sense of safety they feel when suffering has been relieved and they know everyone is being honest with them and the loved ones they will leave behind. This can happen anywhere – in a hospital, in a hospice, in a nursing home or in someone’s home. This excellent book produced by editors and contributors with international reputations deserves to be read by every doctor and nurse who will ever offer palliative care – and that means most of us! Derek Doyle Retired consultant in palliative medicine Vice President, National Council for Palliative Care Founding Member and Adviser, International Association for Hospice and Palliative Care viii Chap01.qxd 28/6/06 11:24 AM Page 1 1 The principles of palliative care Balfour Mount, Geoffrey Hanks, Lorna McGoldrick Components of palliative care Palliative care is the approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual (World Health Organization, 2005) Palliative care is recognised by individualised, holistic models of care, delivered carefully, sensitively, ethically, and therapeutically by using skilled communication with attention to detail, meticulous assessment, and advancing knowledge. Wherever palliative care is used, its core ingredient is the quality of presence that the caregiver brings to the patient, a way of caring that enables discernment of the ongoing needs of the patient and family as they evolve and emphasises being alongside them. The focus is on all that is still possible in this time of multiple losses, the patient’s and family’s quest for meaning, and sustaining their experience of connectedness as they adapt to the challenges of the moment. The term “palliative care” implies a personalised form of health care. It extends the healthcare professional’s mandate beyond the biomedical model to the wider horizon necessary if one is to attend to suffering as well as the biology of disease, caring as well as curing, quality of life as well as quantity of life. The patient and family or significant others are taken together as the unit of care in assessment of needs related to illness. The aim of palliative care is to support optimal quality of life and to foster healing—that is, a shift in response towards an experience of integrity and wholeness on the continuum of the quality of life. Healing Experience of suffering and anguish Quality of life Experience of wholeness and integrity Wounding Beyond the physical The quality of life continuum Meticulous attention to the alleviation of symptoms is the foundation of care of the whole person. Important psychosocial and spiritual concerns may be eclipsed by the presence of uncontrolled pain, nausea, constipation, and the other symptoms of advanced disease. Optimal treatment demands careful assessment of the multiple contributory factors to each symptom. If increasing doses of opioid are prescribed in response to pain that is escalating due to unrecognised existential anguish, the result will be persistent pain, opioid toxicity, and ongoing distress for the patient, family, and caregivers. If we are body, mind, and spirit, those domains are inseparable and interdependent. Thoughtful assessment of each complaint should be considered in the context of the patient’s total suffering; therefore thoughtful assessment is mandatory. Palliative care: selected philosophical perspectives and assumptions ● Not just symptom control ● Control of symptoms in palliative care commonly involves the concurrent use of six to eight or more medications. The goal is consistently to prevent rather than treat symptoms. Effective management depends on frequent adjustment to consistently sustain the minimal effective doses of medication and an emphasis on skilled nursing care as well as the use of the complementary skills of an interdisciplinary team experienced in end of life care. Laboratory investigations—and even such non-invasive routines as monitoring blood pressure, pulse, and temperature—are undertaken only if doing so may lead to interventions that will enhance the quality of life. Palliative care is founded on a philosophy that promotes sensitivity to cultural, religious, sexual, and other defining perspectives from the patient’s point of view; the intent to meet patients where they are rather than where the caregivers feel they should be; sensitivity to the determinants of coping, particularly concerning major existential challenges for the ● ● ● ● ● ● ● ● ● ● ● ● ● ● Nothing matters more than the bowels (Cecily Saunders) Humanise, personalise, de-institutionalise Clinical care grounded in qualitative and quantitative inquiry Experience of illness viewed as a narrative: relational, meaningful, filled with potential Assist progressive understanding of reality at a rate acceptable to the patient “Reality” as illusion; subjectivity of experience; acknowledgment of mystery Quiet efficiency, not hustle and bustle Focus on quality of living in the present moment, not death Accompaniment: empathic presence to the other in the moment Team: led by the patient; egalitarian rather than hierarchical Environment: centred on the patient, welcoming, peaceful Uniqueness, limitations, defences of the patient/family Healing of psyche: an innate potential Potential for adaptation, integration, reconciliation, transcendence Importance of compassion, celebration, community, paradox, humour With unresolved symptoms, “Review! Review! Review!” (Robert Twycross) 1