HPNA PALLIATIVE NURSING MANUALS Structure and Processes of Care HPNA PALLIATIVE NURSING MANUALS Series edited by Betty R. Ferrell, RN, PhD, MA, FAAN, FPCN, CHPN Volume : Structure and Processes of Care Volume 2: Physical Aspects of Care: Pain and Gastrointestinal Symptoms Volume 3: Physical Aspects of Care: Nutritional, Dermatologic, Neurologic and Other Symptoms Volume 4: Pediatric Palliative Care Volume 5: Social Aspects of Care Volume 6: Spiritual, Religious, and Existential Aspects of Care and Cultural Aspects Volume 7: Care of the Patient at the End of Life Volume 8: Ethical and Legal Aspects HPNA PALLIATIVE NURSING MANUALS Structure and Processes of Care Edited by Betty R. Ferrell, RN, PhD, MA, FAAN, FPCN, CHPN Professor and Director Department of Nursing Research and Education City of Hope Comprehensive Cancer Center Duarte, California 1 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 New York Auckland Cape Town Dar es Salaam Hong Kong Karachi Kuala Lumpur Madrid Melbourne Mexico City Nairobi New Delhi Shanghai Taipei Toronto With offices in Argentina Austria Brazil Chile Czech Republic France Greece Guatemala Hungary Italy Japan Poland Portugal Singapore South Korea Switzerland Thailand Turkey Ukraine Vietnam Oxford is a registered trademark of Oxford University Press in the UK and certain other countries. Published in the United States of America by Oxford University Press 98 Madison Avenue, New York, NY 006 © Oxford University Press 205 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 Structure and processes of care / edited by Betty R. Ferrell. p. ; cm. —(HPNA palliative nursing manuals ; volume ) “Content for this series was derived primarily from the Oxford Textbook of Palliative Nursing (4th edition, 205), edited by Betty R. Ferrell, Nessa Coyle, Judith A. Paice. The Textbook contains more extensive content and references so users of this Palliative Nursing Manual are encouraged to use the Textbook as an additional resource.”—Preface. Includes bibliographical references and index. ISBN 978–0–9–022375–5 (alk. paper) I. Ferrell, Betty, editor. II. Oxford textbook of palliative nursing. 4th edition. 204. Based on (expression): III. Series: HPNA palliative nursing manuals ; v. . [DNLM: . Hospice and Palliative Care Nursing. 2. Palliative Care. 3. Terminal Care. WY 52.3] R726.8 66.02′9—dc23 204036629 This material is not intended to be, and should not be considered, a substitute for medical or other professional advice. Treatment for the conditions described in this material is highly dependent on the individual circumstances. And, while this material is designed to offer accurate information with respect to the subject matter covered and to be current as of the time it was written, research and knowledge about medical and health issues are constantly evolving, and dose schedules for medications are being revised continually, with new side effects recognized and accounted for regularly. Readers must therefore always check the product information and clinical procedures with the most up-to-date published product information and data sheets provided by the manufacturers and the most recent codes of conduct and safety regulation. The publisher and the authors make no representations or warranties to readers, express or implied, as to the accuracy or completeness of this material. Without limiting the foregoing, the publisher and the authors make no representations or warranties as to the accuracy or efficacy of the drug dosages mentioned in the material. The authors and the publisher do not accept, and expressly disclaim, any responsibility for any liability, loss, or risk that may be claimed or incurred as a consequence of the use and/or application of any of the contents of this material. 9 8 7 6 5 4 3 2  Printed in the United States of America on acid-free paper Contents Preface vii Contributors ix . National Consensus Project for Quality Palliative Care  Constance Dahlin 2. Hospital-Based Palliative Care 3 Patricia Maani-Fogelman and Marie Bakitas 3. Home Care and Hospice Care 47 Marilyn Bookbinder and Romina Arceo 4. The Intensive Care Unit 57 Jennifer McAdam and Kathleen Puntillo 5. Palliative Care Nursing in the Outpatient Setting 77 v Pamela Stitzlein Davies 6. Long-Term Care: Focus on Nursing Homes 05 Joan G. Carpenter and Mary Ersek 7. Clinical Interventions, Economic Impact, and Palliative Care 7 Patrick J. Coyne, Thomas J. Smith, and Laurie J. Lyckholm Appendix I. Sample CQI Study Proposal to Improve End of Life Care Using FOCUS-PCAD 3 Appendix II. Carepath: Palliative Care for Advanced Disease 37 Index 43 Preface This is the first volume of a new series being published by Oxford University Press in collaboration with the Hospice and Palliative Nurses Association. The intent of this series is to provide palliative care nurses with quick refer- ence guides to each of the key domains of palliative care. The volumes mir- ror the domains established by the National Consensus Project for Quality Palliative Care (NCP), as well as one volume devoted specifically to pediat- ric palliative care. The series will include: Volume : Structure and Processes of Care—overview of palliative nursing care, review of NCP guidelines and practical tools to use in start- ing and maintaining palliative care programs Volume 2: Physical Aspects of Care: Pain and Gastrointestinal Symptoms—pain and other physical symptoms, assessment tools, pharmacology, and patient teaching Volume 3: Physical Aspects of Care: Nutritional, Dermatologic, Neurologic and Other Symptoms—nutrition and genitourinary vii symptom management, assessment tools, pharmacology, and patient teaching Volume 4: Pediatric Palliative Care—key areas of pediatric palliative care, such as pain and symptom management, communication with chil- dren based on development level, and key assessment tools Volume 5: Social Aspects of Care—support of family caregivers and bereavement support Volume 6: Spiritual, Religious, and Existential Aspects of Care and Cultural Aspects—spiritual care and cultural assessment tools Volume 7: Care of the Patient at the End of Life—including physi- cal symptoms, discontinuing life support, family caregiver support, and practical tools such as comfort orders and protocols Volume 8: Ethical and Legal Aspects—to include decision tools, case studies, and models of analysis of ethical dilemmas Content for this series was derived primarily from the Oxford Textbook of Palliative Nursing (4th edition, 205), which is also edited by Betty Ferrell, Nessa Coyle, and Judith Paice, the editors of this series. The Contributors identified in each volume are the authors of chapters in the Oxford Textbook of Palliative Nursing from which the content was selected for this volume. The Textbook contains more extensive content and references, so users of these Palliative Nursing Manuals are encouraged to use the Textbook as an additional resource. This first volume lays out the structures and processes that are necessary to support quality palliative care. Future volumes will focus on individual aspects of this care. E We are grateful to all palliative care nurses who are contributing to the C A advancement of care for seriously ill patients and families. Remarkable F E R progress has occurred over the past 30 years in this field, and nurses have P been central to that progress. Our hope is that this series offers an addi- tional tool to build the care delivery system we strive for. viii Contributors Romina Arceo, ANP-C Constance Dahlin, ANP-BC, Nurse Practitioner of Pain and ACHPN, FPCN, FAAN Palliative Care Clinical Director Department of Pain Medicine and Palliative Care Service Palliative Care Massachusetts General Hospital Beth Israel Medical Center Boston, Massachusetts New York, New York Mary Ersek, PhD, RN, Marie Bakitas, PhD FPCN, FAAN Marie L. O’Koren Endowed Chair Director of National PROMISE and Professor of Nursing Center UAB School of Nursing Philadelphia Veterans Affairs The University of Alabama at Medical Center Birmingham Associate Professor Birmingham, Alabama University of Pennsylvania School x i of Nursing Marilyn Bookbinder, RN, PhD Philadelphia, Pennsylvania Department of Pain Medicine and Palliative Care Laurie J. Lyckholm, MD Beth Israel Medical Center Department of Hematology/ New York, New York Oncology Virginia Commonwealth University Joan G. Carpenter, MN, Massey Cancer Center CRNP, NP-C, GNP-BC, Richmond, Virginia ACHPN, PhD Patricia G. Archbold Predoctoral Patricia Maani-Fogelman, Scholar and Doctor of DNP Philosophy Student Department of Palliative Medicine College of Nursing Geisinger Medical Center University of Utah Danville, Pennsylvania Salt Lake City, Utah Jennifer McAdam, RN, PhD Nurse Practitioner Coastal Hospice and Palliative Care Assistant Professor of Nursing Berlin, Maryland Samuel Merritt University Oakland, California Patrick J. Coyne, MSN, APRN, FAAN, FPCN Clinical Director of the Thomas Palliative Care Unit Virginia Commonwealth University Massey Cancer Center Richmond, Virginia