i Oxford Textbook of Palliative Nursing ii iii Advance Praise for Oxford Textbook of Palliative Nursing, Fifth Edition “This is the ultimate go-to book for nurses caring for patients at end of life and a must for all libraries. The textbook is fresh, current, and clinician friendly. For nurses caring for children and their families, three new chapters in this edition offer critical new information on caring for adolescents, using social media to communicate, and accessing pediatric care. Congratulations to the editors for producing such a comprehensive resource for all nurses, including pediatric nurses.” —Lisa C. Lindley, PhD, RN, FPCN, Associate Professor, College of Nursing, University of Tennessee, Knoxville, TN “What I immediately liked about this new edition of the Oxford Textbook of Palliative Nursing are the chapters from new authors that both encompass a multidisciplinary approach and address today’s healthcare, including such topics as value-based care, advance care planning, and organ donation. The last chapter in particular, “The Ethos of Palliative Nursing,” summarizes the essence of palliative care to guide nurses on focusing on the quality of life and support of patients and their family members.” —Rose Virani, RNC, MHA, OCN, FPCN, Senior Research Specialist and ELNEC Project Director, Division of Nursing Research and Education, City of Hope, Duarte, CA “Since its inception, the Oxford Textbook of Palliative Nursing has been the go-to resource for nurses and nurse practitioners caring for se- riously ill patients and their families. The new Fifth Edition continues in that venerable tradition as an excellent resource for nurses at the bedside, in the classroom, and conducting research in the field of palliative care. This edition reflects the growth of the field of palliative care nursing, both in breadth as palliative care expands to new settings and populations as well as depth as the evidence base for palliative care continues to mature. Congratulations to the editors and authors for producing such an outstanding textbook.” —Sally Norton, PhD, RN, FNAP, FPCN, FAAN, Associate Professor and Independence Foundation Chair in Nursing and Palliative Care, University of Rochester School of Nursing, Rochester, NY “The comprehensive scope and content of the Oxford Text of Palliative Nursing, Fifth Edition, is a testament to the growth in the specialty of palliative nursing. This book will serve as an essential resource for hospice and palliative nurses and other members of the interdiscipli- nary team, as well as for clinicians who practice in other clinical specialties, but provide care for seriously ill patients and their families. The last chapter, “The Ethos of Palliative Nursing,” provides a great review of the moral nature of palliative nursing and provides a wonderful framework for self-reflection.” —Sally Welsh, MSN, RN, NEA-BC, Chief Executive Officer, Hospice and Palliative Nurses Association, Hospice and Palliative Credentialing Center, Hospice and Palliative Nurses Foundation, Savannah, GA iv v Oxford Textbook of Palliative Nursing FIFTH EDITION Edited by Betty Rolling Ferrell, RNM, PhD, FAAN, FPCN, CHPN Professor and Director Department of Nursing Research and Education City of Hope Comprehensive Care Center Duarte, California Judith A. Paice, PhD, RN, FAAN Director, Cancer Pain Program Division of Hematology- Oncology Northwestern University, Feinberg School of Medicine Chicago, Illinois 1 vi 1 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 certain other countries. Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016, United States of America. © Oxford University Press 2019 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 license, or under terms agreed with the appropriate reproduction rights organization. Inquiries 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. Library of Congress Cataloging- in- Publication Data Names: Ferrell, Betty, editor. | Paice, Judith A., editor. Title: Oxford textbook of palliative nursing / edited by Betty Rolling Ferrell, Judith A. Paice. Other titles: Textbook of palliative nursing Description: Fifth edition. | New York, NY : Oxford University Press, [2019] | Includes bibliographical references and index. Identifiers: LCCN 2018024248 | ISBN 9780190862374 (hbk.) Subjects: | MESH: Hospice and Palliative Care Nursing–methods | Palliative Care | Terminal Care Classification: LCC RT87.T45 | NLM WY 152.3 | DDC 616/.029—dc23 LC record available at https://lccn.loc.gov/2018024248 9 8 7 6 5 4 3 2 1 Printed by Sheridan Books, Inc., United States of America vii Dedication Th is fi ft h edition of the Oxford Textbook of Palliative Nursing is rendered by the nurses at the bedside to ease the profound suff ering dedicated to Nessa Coyle PhD, RN, co-e ditor of each of the previous of people living and dying in pain. Nessa was one of the fi rst nurses four editions of this textbook. While Nessa is not an editor for this to teach us about the existential aspects of palliative nursing and book, her career contributions are evident in every chapter and her our role in supporting patients and families through grief, spir- wisdom is well refl ected in her chapter in this edition, “Advocacy in itual distress, and a search for meaning during serious illness. Her Palliative Nursing.” qualitative research provided insight for generations of nurses and other professionals as she shared the worlds of the real experts— A textbook such as this is only possible once a fi eld has evolved to patients— and the lessons they teach us about this fi eld we know as the point of having both scholarly work and clinical experience to palliative care. share. Nessa has been a pioneer in both of these worlds, a true clini- cian scholar who has lived the work of palliative nursing at the bed- We dedicate this 5th edition to Nessa. Every section and every side while also contributing some of the most insightful scholarship chapter within it are a testament to her infl uence on nursing. that defi nes palliative nursing. Th rough her gentle yet profoundly strong voice, we have been guided to deliver the care described in these pages. Th is year (2018) marks Nessa’s 60th year as a nurse. Her pio- Betty Ferrell neering work in cancer pain management helped advance not only Judy Paice the pharmacologic approaches to care, but also the palliative care x ix Contents Preface x iii 8. Pain Assessment 9 8 Regina M. Fink , Rose A. Gates , and Kate D. Jeff ers Acknowledgments xv Contributors xvii 9. Pain Management 1 16 Judith A. Paice SECTION I 10. Fatigue 132 Edith O’Neil- Page , Grace E. D ean , and Paula R. Anderson General Principles 11. Anorexia and Cachexia 1 40 1. Introduction to Palliative Care 3 Elizabeth E. Schack and Dorothy Wholihan Betty Rolling Ferrell 12. Nausea and Vomiting 149 2. National Consensus Project for Quality David Collett and Kimberly Chow Palliative Care: Assuring Quality Palliative 13. Dysphagia, Hiccups, and Other Care through Clinical Practice Guidelines 5 Constance M. Dahlin Oral Symptoms 163 Rachel Klinedinst , Audrey Kurash Cohen , 3. Hospital- Based Palliative Care 13 and Constance M. Dahlin Patricia Maani- Fogelman 14. Bowel Management: Constipation, 4. Principles of Patient and Family Assessment 3 2 Obstruction, Diarrhea, and Ascites 186 John D. Chovan Stefanie N. Mooney , Purvi Patel , and Sorin Buga 5. Communication in Palliative Care: An 15. Medically Administered Nutrition Essential Competency for Nurses 55 and Hydration 206 Constance M. Dahlin and E laine W ittenberg Katy M. Lanz , Michelle S. Gabriel , and Jennifer A. Tschanz 6. Advance Care Planning 7 9 16. Dyspnea, Cough, and Terminal Secretions 217 Shigeko Izumi DorAnne Donesky 17. Bladder Management in Palliative Care 2 30 SECTION II Naomi Farrington and Catherine Murphy Symptom Assessment and 18. Lymphedema Management 2 38 Management Mei R. Fu , Bonnie B. Lasinski , Janet H. Van Cleave , and Charles P. Tilley 7. Interdisciplinary Palliative Care Teams: Specialists in Delivering 19. Palliative Wound, Ostomy, and Palliative Care 8 9 Continence Care 251 Polly Mazanec , Rebekah Reimer , Jessica Bullington , Charles P. Tilley , Mei R. Fu , and Jana M. Lipson Patrick J. Coyne , Herman Harris , II , Mary Catherine D ubois , Catherine Rogers , 20. Pruritus, Fever, and Sweats 285 Angel Smothers and Jennifer Aron