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Oxford Textbook of Palliative Nursing

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 seriously 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 interdisciplinary 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

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

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

Dedication

This fifth edition of the Oxford Textbook of Palliative Nursing is dedicated to Nessa Coyle PhD, RN, co-editor of each of the previous four editions of this textbook. While Nessa is not an editor for this book, her career contributions are evident in every chapter and her wisdom is well reflected in her chapter in this edition, “Advocacy in Palliative Nursing.”

A textbook such as this is only possible once a field has evolved to the point of having both scholarly work and clinical experience to share. Nessa has been a pioneer in both of these worlds, a true clinician scholar who has lived the work of palliative nursing at the bedside while also contributing some of the most insightful scholarship that defines palliative nursing.

This year (2018) marks Nessa’s 60th year as a nurse. Her pioneering work in cancer pain management helped advance not only the pharmacologic approaches to care, but also the palliative care

rendered by the nurses at the bedside to ease the profound suffering of people living and dying in pain. Nessa was one of the first nurses to teach us about the existential aspects of palliative nursing and our role in supporting patients and families through grief, spiritual distress, and a search for meaning during serious illness. Her qualitative research provided insight for generations of nurses and other professionals as she shared the worlds of the real experts— patients—and the lessons they teach us about this field we know as palliative care.

We dedicate this 5th edition to Nessa. Every section and every chapter within it are a testament to her influence on nursing. Through her gentle yet profoundly strong voice, we have been guided to deliver the care described in these pages.

Betty Ferrell

Judy Paice

Preface xiii

Acknowledgments xv

Contributors xvii

SECTION I

General Principles

1. Introduction to Palliative Care 3

Betty Rolling Ferrell

2. National Consensus Project for Quality Palliative Care: Assuring Quality Palliative Care through Clinical Practice Guidelines 5

Constance M. Dahlin

3. Hospital-Based Palliative Care 13

Patricia Maani-Fogelman

4. Principles of Patient and Family Assessment 32

John D. Chovan

5. Communication in Palliative Care: An Essential Competency for Nurses 55

Constance M. Dahlin and Elaine Wittenberg

6. Advance Care Planning 79

Shigeko Izumi

SECTION II

Symptom Assessment and Management

7. Interdisciplinary Palliative Care Teams: Specialists in Delivering Palliative Care 89

Polly Mazanec, Rebekah Reimer, Jessica Bullington, Patrick J. Coyne, Herman Harris , II, Mary Catherine Dubois , Catherine Rogers , and Jennifer Aron

8. Pain Assessment 98

Regina M. Fink , Rose A. Gates , and Kate D. Jeffers

9. Pain Management 116

Judith A. Paice

10. Fatigue 132

Edith O’Neil-Page, Grace E. Dean, and Paula R. Anderson

11. Anorexia and Cachexia 140

Elizabeth E. Schack and Dorothy Wholihan

12. Nausea and Vomiting 149

David Collett and Kimberly Chow

13. Dysphagia, Hiccups, and Other Oral Symptoms 163

Rachel Klinedinst , Audrey Kurash Cohen, and Constance M. Dahlin

14. Bowel Management: Constipation, Obstruction, Diarrhea, and Ascites 186

Stefanie N. Mooney, Purvi Patel, and Sorin Buga

15. Medically Administered Nutrition and Hydration 206

Katy M. Lanz , Michelle S. Gabriel, and Jennifer A. Tschanz

16. Dyspnea, Cough, and Terminal Secretions 217

DorAnne Donesky

17. Bladder Management in Palliative Care 230

Naomi Farrington and Catherine Murphy

18. Lymphedema Management 238

Mei R. Fu, Bonnie B. Lasinski, Janet H. Van Cleave, and Charles P. Tilley

19. Palliative Wound, Ostomy, and Continence Care 251

Charles P. Tilley, Mei R. Fu, and Jana M. Lipson

20. Pruritus, Fever, and Sweats 285

Angel Smothers

21. Neurological Disorders 291

Margaret A. Schwartz

22. Anxiety and Depression 309

Jaroslava Salman, Emma Wolfe, and Sunita K. Patel

23. Delirium, Confusion, and Agitation 319

Wendy Goldberg, Greg Mahr, Amy M. Williams, and Michael Ryan

24. Insomnia 330

Karla Schroeder

25. Sexuality and Intimacy in Serious Illness and at the End of Life 337

Heather Shaw and Joshua Fronk

26. Urgent Syndromes at the End of Life 344

Quinten Robertson and Kelli Gershon

27. Sedation for Refractory Symptoms 356

Chandana Banerjee and Bonnie Freeman

28. Complementary and Integrative Therapies in Palliative Care 361

Mary-Anne Meyer and Melinda Ring

29. Withdrawal of Invasive Mechanical Ventilation 371

Margaret K. Campbell

SECTION III

Psychosocial and Spiritual Support

30. The Meaning of Hope in the Dying 379

Valerie T. Cotter and Anessa M. Foxwell

31. Bereavement 390

Inge B. Corless and Janice Bell Meisenhelder

32. Supporting Families and Family Caregivers in Palliative Care 405

Kelli I. Stajduhar and J. Nicholas Dionne-Odom

33. Planning for the Actual Death 420

Patricia Berry and Julie Griffie

34. Spiritual Screening, History, and Assessment 432

Elizabeth Johnston Taylor

35. Spiritual Care Intervention 447

William Rosa

36. Meaning in Illness 456

Tami Borneman and Katherine Brown-Saltzman

SECTION IV

Special Patient Populations

37. Cultural Considerations in Palliative Care 469

Carrie Cormack, Polly Mazanec, and Joan T. Panke

38. Older Adult Patients in the Community 483

Carol O. Long

39. Poor, Homeless and Underserved Populations 490

Caroline Olney, Sarah Stroe, and Anne Hughes

40. Palliative Care for Patients with Mental Illness 503

John D. Chovan and Betty D. Morgan

41. Palliative Care for People Living with HIV 513

Jacquelyn Slomka

42. Caring for the Patient with Substance Use Disorder at the End of Life 521

Peggy Compton, Yu-Ping Chang, and Salimah Meghani

43. Cancer Survivorship 530

Anne Reb and Denice Economou

44. Veterans 539

Deborah Grassman

45. Organ Donation 545

Lissi Hansen and Lauren F. Dunn

46. Pulmonary Palliative Care 552

Patricia A. Maani-Fogelman and Ruby A. Weller

47. Palliative Care in Heart Failure 559

J. Nicholas Dionne-Odom, Rachel Wells, and Keith M. Swetz

SECTION V

End-of-Life Care across Settings

48. Improving the Quality of Care across All Settings 573

Marilyn Bookbinder, Romina Arceo, and James T. McDaniel

49. Long-Term Care: Focus on Nursing Homes 606

Joan Carpenter and Mary Ersek

50. Palliative Care in the Community 615

Nancy Robertson and Barbara Sutton

51. The Intensive Care Unit 624

Jennifer K. McAdam and Céline Gélinas

52. Palliative Care Nursing in the Outpatient Setting 639

Pamela Stitzlein Davies and Kathleen Broglio

53. Palliative Care in the Emergency Department 652

Rebecca Wright and Benjamin Roberts

54. The Role of Nursing in Caring for Patients Receiving Palliative Surgery or Chemotherapy 660

Virginia Sun, Tami Tittelfitz, and Marjorie J. Hein

55. Rural Palliative Care 670

Richard A. Taylor, J. Nicholas Dionne-Odom, Erin R. Currie, Macy Stockdill, and Marie A. Bakitas

56. The Role of PT, OT, and Other Therapies in Palliative Care for Seriously Ill Patients 682

Dennis Lin, Megan Borjan, Seanell D. San Andres, and Christina Kelly

57. Value-Based Care 690

Finly Zachariah and William Dale

SECTION VI

Pediatric Palliative Care

58. Symptom Management in Pediatric Palliative Care 699

Joan “Jody” Chrastek and Camara van Breemen

59. Pediatric Hospice and Palliative Care 708

Vanessa Battista and Gwenn LaRagione

60. Pediatric Goals of Care: Leading through Uncertainty 727

Christina McDaniel and Jordan M. Desai

61. End-of-Life Decision-Making in Pediatric Oncology 736

Deborah A. Lafond and Katherine Patterson Kelly

62. Palliative Care in the Perinatal Setting: Neonatal Intensive Care Unit, Labor and Delivery Unit 749

Cheryl Ann Thaxton, Diana Jacobson, Heather Murphy, and Tracey Whitley

63. Grief and Bereavement in Perinatal and Pediatric Palliative Care 758

Rana Limbo, Kathie Kobler, and Betty Davies

64. Pediatric Pain: Knowing the Child Before You 773

Juliana H. O’Brien and Maggie C. Root

65. Supporting Adolescents with a Parent in Hospice 783

Denice Sheehan, Pamela Stephenson, M. Murray

Mayo, Diane Snyder Cowan, and Dana Hansen

66. Use of Social Media as a Communication Tool for People with Serious Illness and Their Families 791

Dana Hansen, Amy Petrinec, and Nidal Harb

67. Access to Pediatric Hospice and Palliative Care 800

Lisa C. Lindley and Jessica Keim-Malpass

SECTION VII

Special Issues for the Nurse in End-of-Life Care

68. The Advanced Practice Registered Nurse 809

Clareen Wiencek and Alexander Wolf

69. Self-Care 817

Kathy G. Kravits

70. Ethical Considerations in Palliative Care 824

Maryjo Prince-Paul and Barbara J. Daly

71. Palliative Care and Requests for Assistance in Dying 837

Carey T. Ramirez, Kathleen Fundalinski, Judy Knudson, and John Himberger

72. Nursing Education 844

Pam Malloy and Andra Davis

73. Nursing Research 855

Terrah Foster Akard, Karen Hyden, and Mary Jo Gilmer

74. Advocacy in Palliative Nursing: A Conceptual Model 861

Nessa Coyle and Timothy W. Kirk

75. Global Palliative Care 868

Virginia LeBaron and Annette Galassi

76. The Ethos of Palliative Nursing 877

Mark Lazenby and Michael Anthony Moore

Index 881

Preface

The first edition of this Textbook was published in 2001 with the primary intent of helping to define the field of Palliative Nursing as a very new specialty. There has been enormous progress over these years, far exceeding even our own expectations, and each of the subsequent editions of the book has reflected the progress of the field and the contributions of nursing as members of interdisciplinary teams dedicated to competent and compassionate care of the seriously ill.

This fifth edition of the Oxford Textbook of Palliative Nursing moves the field a very big step forward as our field is now recognized as a critical nursing specialty in healthcare but also vastly growing

in demand as essential to primary care practice in all settings of nursing. From the neonatal ICU to the long-term care setting for elders, palliative care provides attention to the physical, psychological, social, and spiritual needs of patients and families. The best definition of palliative care is that it is the kind of care we would want for our loved ones. It is the care that nurses have defined, imagined, and brought to life through expert clinical practice and scholarship. This edition reflects the broad terrain of our care, the ever-growing populations in need of palliative care and the solid evidence base for our practice.

Betty

Ferrell and Judith Paice

Acknowledgments

We are grateful for the authors of the 76 chapters in this textbook. Their writing and their careers have built the discipline of Palliative Nursing and each chapter is a labor of love and dedication to better care for seriously ill patients and families. We also thank Andrea Hayward and Ellen Friedmann whose editorial assistance on every chapter of this text helped to create this textbook to guide the practice of nurses around the world.

Contributors

Terrah Foster Akard, PhD, RN, CPNP, FAAN

Associate Professor of Nursing and Medicine Vanderbilt University School of Nursing Nashville, Tennessee

Paula R. Anderson, RN, MN, OCN Oncology Nurse Consultant Lawrence, Kansas

Romina Arceo, NP-BC, RN, MS Nurse Practitioner Department of Anesthesiology, Pain Management Mount Sinai, Beth Israel Medical Center New York, New York

Jennifer Aron, DO Former Fellow

Medical University of South Carolina Charleston, South Carolina

Marie A. Bakitas, DNSc, CRNP, NP-C, AOCN, ACHPN, FAAN

Professor and Marie L. O’Koren Endowed Chair

The University of Alabama at Birmingham School of Nursing Birmingham, Alabama

Chandana Banerjee, MD City of Hope National Research Center Duarte, California

Vanessa Battista, RN, MS, PCPNP-BC Pediatric Nurse Practitioner

The Children's Hospital of Philadelphia Pediatric Palliative Advanced Care Team (PACT) Philadelphia, Pennsylvania

Patricia Berry, PhD, RN, ACHPN, FPCN, FAAN Professor

Oregon Health and Science University School of Nursing Portland, Oregon

Marilyn Bookbinder, RN, PhD, FPCN Director of Quality and Performance Improvement

MJHS Institute for Innovation in Palliative Care

Assistant Professor, Department of Family and Social Medicine Albert Einstein College of Medicine New York, New York

Megan Borjan, PT, DPT Department of Rehabilitation City of Hope National Medical Center Duarte, California

Tami Borneman, RN MSN, CNS, FPCN City of Hope Duarte, California

Camara van Breemen, MN, CHPCN Nurse Practitioner (F) Canuck Place Children’s Hospice Vancouver, Canada

Kathleen Broglio, DNP, ANP-BC, ACHPN, CPE, FPCN Nurse Practitioner, Section Palliative Medicine Assistant Professor of Medicine Dartmouth Hitchcock Medical Center Lebanon, New Hampshire

Katherine Brown-Saltzman, MA, RN University of California, Los Angeles Los Angeles, California

Sorin Buga, MD

Associate Clinical Professor of Medicine Division of Supportive Medicine City of Hope Medical Center Duarte, California

Jessica Bullington, BSN, RN, CHPN Palliative Care Program Specialist Medical University of South Carolina Charleston, South Carolina

Margaret L. Campbell, PhD, RN, FPCN Wayne State University, College of Nursing Detroit, Michigan

Joan Carpenter, PhD, CRNP, ACHPN Post-doctoral Nurse Research Fellow Corporal Michael J. Crescenz Veterans Affairs Medical Center Philadelphia, Pennsylvania

Yu-Ping Chang, PhD, RN, FGSA Associate Professor School of Nursing State University of New York at Buffalo Buffalo, New York

John D. Chovan, PhD, DNP, RN, CNP, CNS, PMHNP- BC, PMHCNS-BC/Adult, ACHPN Department of Nursing

Otterbein University Mount Carmel Hospice & Palliative Care Services Westerville, Ohio

Kimberly Chow, MSN, ANP-BC, ACHPN Clinical Program Manager and Nurse Practitioner Coordinator Supportive Care Service

Memorial Sloan Kettering Cancer Center New York, New York

Joan “Jody” Chrastek, RN, CHPN, DNP, FPCN Pediatric Advanced Complex Care Team Coordinator Fairview Home Care and Hospice Minneapolis, Minnesota

Janet H. Van Cleave, PhD, RN, AOCNP Assistant Professor New York University Rory Meyers College of Nursing New York, New York

Audrey Kurash Cohen, MS, CCC-SLP Clinical Practice Specialist, Speech-Language Pathologist Department of Speech, Language and Swallowing Disorders Massachusetts General Hospital Boston, Massachusetts

David Collett, MSN, AGACNP-BC Nurse Practitioner Fellow Supportive Care Service

Memorial Sloan Kettering Cancer Center New York, New York

Peggy Compton, RN, PhD, FAAN Associate Professor Department of Family and Community Health University of Pennsylvania School of Nursing Philadelphia, Pennsylvania

Inge B. Corless, PhD, RN, FNAP, FAAN Professor MGH Institute of Health Professions Boston, Massachusetts

Carrie Cormack, DNP, APRN, CPNP Assistant Professor, College of Nursing

The Medical University of South Carolina Charleston, South Carolina

Valerie T. Cotter, DrNP, AGPCNP-BC, FAANP, FAAN Assistant Professor

Johns Hopkins School of Nursing Baltimore, Maryland

Diane Snyder Cowan, MA, MT-BC, CHPCA Hospice of the Western Reserve Cleveland, Ohio

Nessa Coyle, PhD, APRN, FAAN Consultant, Clinical Ethics Memorial Sloan Kettering Cancer Center New York, New York

Patrick J. Coyne, MSN, ACHPN, ACNS-BC, FAAN, FPCN Director of Palliative Care Medical University of South Carolina Charleston, South Carolina

Erin R. Currie, PhD, RN Assistant Professor Family, Community, and Health Systems Department The University of Alabama at Birmingham School of Nursing Birmingham, Alabama

Constance M. Dahlin, MSN, ANP-BC, ACHPN, FPCN, FAAN Director of Professional Practice Hospice and Palliative Nurses Association Director, Palliative Care APRN Externship Pittsburgh, Pennsylvania

Palliative Nurse Practitioner North Shore Medical Center Salem, Massachusetts

William Dale, MD, PhD Clinical Professor Arthur M. Coppola Family Chair Department of Supportive Care Medicine Deputy Director, Social Science, Center for Cancer & Aging City of Hope National Medical Center Duarte, California

Barbara J. Daly, PhD, RN, FAAN Gertrude Perkins Oliva Professor in Oncology Nursing Clinical Ethics Director University Hospitals of Cleveland Case Medical Center Cleveland, Ohio

Betty Davies, RN, PhD, CT, FAAN Professor and Senior Scholar School of Nursing University of Victoria Victoria, Canada

Pamela Stitzlein Davies, MS, ARNP, ACHPN, RN-BC Adult/Geriatric Nurse Practitioner Teaching Associate, Department of Neurology, University of Washington Affiliate Instructor, School of Nursing, University of Washington Adjunct Faculty, School of Health Sciences, Seattle Pacific University Seattle, Washington

Andra Davis, RN, MN, PhD Assistant Professor Washington State University College of Nursing Vancouver, Washington

Grace E. Dean, PhD, RN Nurse Scientist, Roswell Park Cancer Institute Associate Professor, School of Nursing SUNY University at Buffalo Buffalo, New York

Jordan M. Desai, MS, LISW-CP Director of Support Services Palladium Hospice and Palliative Care Columbia, South Carolina

J. Nicholas Dionne-Odom, PhD, RN, ACHPN Postdoctoral Fellow School of Nursing University of Alabama at Birmingham (UAB) Birmingham, Alabama

DorAnne Donesky, PhD, ANP-BC, ACHPN Department of Physiological Nursing University of California, San Francisco San Francisco, California

Mary Catherine Dubois, MSW, MHA, LISW-CP, CCM Palliative Care Social Worker Medical University of South Carolina Charleston, South Carolina

Lauren F. Dunn, BSN, RN, CPTC Pacific NW Transplant Bank Portland, Oregon

Denice Economou, RN, MN, CHPN Nursing Research and Education City of Hope Duarte, California

Mary Ersek, PhD, RN, FPCN Senior Scientist, National Veteran Experience Center (formerly, the PROMISE Center)

Corporal Michael J. Crescenz Veterans Affairs Medical Center Professor of Palliative Care University of Pennsylvania School of Nursing Philadelphia, Pennsylvania

Naomi Farrington, RN, BA (Hons), MA, PhD, PGDip Chemotherapy Staff Nurse and HEE NIHR Clinical Lecturer University Hospital Southampton NHSFT and University of Southampton Southampton, United Kingdom

Regina M. Fink, PhD, APRN, CHPN, AOCN, FAAN Associate Professor College of Nursing and School of Medicine University of Colorado Anschutz Medical Campus Aurora, Colorado

Anessa M. Foxwell, MSN, CRNP, ACHPN Nurse Practitioner, Palliative Care Program Hospital of the University of Pennsylvania Philadelphia, Pennsylvania

Bonnie Freeman, DNP, ANP, CT, ACHPN City of Hope National Research Center Duarte, California

Joshua Fronk, DO Clinical Assistant Professor Department of Palliative Medicine Division of Primary Care and Population Health Stanford University Stanford, California

Mei R. Fu, PhD, RN, FAAN Associate Professor with Tenure New York University Rory Meyers College of Nursing New York, New York

Kathleen Fundalinski, FNP-C, ACHPN Palliative Medicine Service UCHealth North Loveland, Colorado

Michelle S. Gabriel, RN, MSN Director of Performance Improvement El Camino Hospital Mountain View, California

Annette Galassi, RN, MA, OCN Oncology Nurse Consultant Armand Global Consulting Rockville, Maryland

Rose A. Gates, PhD, ANP, AOCN Hematology Oncology Nurse Practitioner University of Colorado Health Memorial Hospital Colorado Springs, Colorado

Celine Gelinas, RN, PhD Associate Professor Ingram School of Nursing McGill University Montreal, Canada

Kelli Gershon, FNP-BC, ACHPN Symptom Management Consultants Humble, Texas

Mary Jo Gilmer, PhD, MBA, RN-BC, FAAN Professor of Nursing and Medicine (Pediatrics) Co-Director, Pediatric Palliative Care Research Team Vanderbilt University School of Nursing Monroe Carell Jr. Children's Hospital at Vanderbilt Nashville, Tennessee

Wendy Goldberg, MSN, APRN, BC Nurse Practitioner and Consultant Henry Ford Cancer Institute Division of Psychosomatic Medicine Department of Behavioral Health Henry Ford Health System Detroit, Michigan

Deborah Grassman, MSN, APRN Founder, Opus Peace Director of Opus Peace Institute for Soul Injury St. Petersburg, Florida

Julie Griffie, MSN, RN, AOCN Clinical Nurse Specialist, Palliative Care Medical College of Wisconsin Waukesha, Wisconsin

Dana Hansen, PhD, APRN, ACHPN Assistant Professor Kent State University College of Nursing Kent, Ohio

Lissi Hansen, PhD, RN Professor, Graduate Programs Oregon Health & Science University School of Nursing Portland, Oregon

Nidal Harb, PhDc, RN

Kent State University College of Nursing Kent, Ohio

Herman Harris, II, MDiv

Palliative Care Chaplain

Medical University of South Carolina Charleston, South Carolina

Marjorie J. Hein, DNP, FNPc, NP Department of Medicine/Gastroenterology Division City of Hope Duarte, California

John Himberger, MSN, FNP-BC, ACHPN Director, Palliative Care

University of Colorado Health Southern Region Colorado Springs, Colorado

Anne Hughes, PhD, FNP-BC, ACHPN, FPCN, FAAN Consultant, Palliative, End-of-Life and Long-Term Care Montara, California

Karen Hyden, APN-BC, MSN, MEd, ACHPN PhD Student, University of Colorado Denver, Colorado

Palliative Care Nurse Practitioner, Compassus Brentwood, Tennessee Instructor, Institute for Palliative Care

The California State University San Marcos, California

Shigeko Izumi, PhD, RN, FPCN Assistant Professor

Oregon Health & Science University School of Nursing Portland, Oregon

Diana Jacobson, PhD, RN, PPCNP-BC, PMHS, FAANP Clinical Associate Professor Pediatric Specialty Coordinator DNP Program

Healthy Choices Intervention Program Research Arizona State University College of Nursing and Health Innovation Pheonix, Arizona

Kate D. Jeffers, PharmD, MHA, BCOP Ambulatory Oncology Clinical Pharmacy Specialist PGY1 Pharmacy Residency Program Director University of Colorado Health Memorial Hospital Colorado Springs, CO

Jessica Keim-Malpass, PhD, RN Assistant Professor

University of Virginia School of Nursing Charlottesville, Virginia

Christina Kelly, MA, CCC-SLP Department of Rehabilitation City of Hope National Medical Center Duarte, California

Katherine Patterson Kelly, PhD, APRN, PCNS-BC, CPON

Division of Nursing Quality and Research Children’s National Health System Washington, District of Columbia

Timothy W. Kirk, PhD

Associate Professor of Philosophy

City University of New York, York College

Ethics Consultant

MJHS Hospice and Palliative Care

New York, New York

Rachel Klinedinst, MSN, AGACNP-BC, CRNP, ACHPN Co-Director, Nurse Practitioner

Inpatient Palliative Care Program

Hospital of the University of Pennsylvania Philadelphia, Pennsylvania

Judy Knudson, MPAS, PA-C, BSN

Instructor Physician Assistant Medicine

University of Colorado Denver, Colorado

Kathie Kobler, PhD, APRN, PCNS-BC, CHPPN, FPCN

APN Coordinator, Center for Fetal Care

Perinatal Palliative Care

Advocate Children’s Hospital Park Ridge, Illinois

Kathy G. Kravits, MA, RN, HNB-BC, LPC, NCC, LMHC, ATR-BC

Senior Research Specialist

Division of Nursing Research and Education

City of Hope Comprehensive Cancer Center

City of Hope Duarte, California

Deborah A. Lafond, DNP, PPCNP-BC, CPON, CHPPN

PANDA Palliative Care Team

Children’s National Health System Washington, District of Columbia

Katy M. Lanz, DNP, RN, AGPCNP-BC, ACHPN, FPCN

Chief Clinical Officer

Aspire Healthcare Pittsburgh, Pennsylvania

Gwenn LaRagione, RN, BSN, CCM, CHPPN

Nurse Coordinator

Pediatric Advanced Care Team

The Children’s Hospital of Philadelphia Philadelphia, Pennsylvania

Bonnie B. Lasinski, MA, PT, CI-CS, CLT-LANA Clinical Director

Boris-Lasinski School, a Casley-Smith US Affiliate Pawleys Island, South Carolina

Mark Lazenby, PhD, APRN, FAAN

Associate Professor of Nursing

Yale University School of Nursing

Associate Professor of Religion and Health

Yale University Divinity School

New Haven, Connecticut

Virginia LeBaron, PhD, APRN, ACHPN, FAANP Assistant Professor University of Virginia School of Nursing Charlottesville, Virginia

Rana Limbo, PhD, RN, CPLC, FAAN

Senior Consultant and Associate Director

Resolve Through Sharing®

Gundersen Health System

La Crosse, Wisconsin

Dennis Lin, OTD, OTR/L Department of Rehabilitation City of Hope National Medical Center Duarte, California

Lisa C. Lindley, PhD, RN Assistant Professor College of Nursing University of Tennessee, Knoxville Knoxville, Tennessee

Jana M. Lipson, MS, AGPCNP-BC, ACHPN Palliative Care Nurse Practitioner Mount Sinai Hospital New York, New York

Carol O. Long, PhD, RN, FPCN, FAAN Principal, Capstone Healthcare Founder, Palliative Care Essentials Transcultural Nursing Scholar, Transcultural Nursing Society Adjunct Faculty, Arizona State University College of Nursing and Health Innovation Pheonix, Arizona

Patricia Maani-Fogelman, DNP Division of Pulmonary, Critical Care, and Sleep Medicine Geisinger Health System Danville, Pennsylvania

Greg Mahr, MD Senior Staff Psychiatrist Division Head, Psychosomatic Medicine Department of Behavioral Health Henry Ford Health System Assistant Professor, Wayne State University Detroit, Michigan

Pam Malloy, MN, RN, FPCN, FAAN Director and Co-Investigator of the ELNEC Project Special Advisor on Global Initiatives American Association of Colleges of Nursing (AACN) Washington, District of Columbia

M. Murray Mayo, PhD, APRN, ACHPN Ursuline College, The Breen School of Nursing Pepper Pike, Ohio

Polly Mazanec, PhD, ACNP-BC, AOCN, ACHPN, FPCN Research Associate Professor Case Western Reserve University FPB School of Nursing Cleveland, Ohio

Jennifer L. McAdam, RN, PhD Associate Professor School of Nursing

Samuel Merritt University Oakland, California

Christina McDaniel, RN, MSN, CHPPN Clinical Instructor MUSC College of Nursing Charleston, South Carolina

James T. McDaniel, DNP, MSN, RN-BC, CHPN Executive Director, Hospice and Palliative Care MJHS Hospice and Palliative Care New York, New York

Salimah Meghani, PhD, MBE, RN, FAAN Associate Professor Department of Biobehavioral Health Sciences University of Pennsylvania School of Nursing Philadelphia, Pennsylvania

Janice Bell Meisenhelder, DNSc, RN Professor Department of Nursing Emmanuel College Boston, Massachusetts

Mary-Anne Meyer APN/CNP Advance Practice Nurse, Integrative Primary Care Osher Center for Integrative Medicine Northwestern Medicine Master of Science in Nursing Rush University Chicago, Illinois

Stefanie N. Mooney, MD Assistant Clinical Professor of Medicine Division of Supportive Medicine City of Hope Medical Center Duarte, California

Michael Anthony Moore, BA, RN Yale University School of Nursing New Haven, Connecticut

Betty D. Morgan, PhD, PMHCNS-BC Department of Nursing (retired) University of Massachusetts, Lowell Lowell, Masschusetts

Catherine Murphy, RN, BSc (Hons), MSc, PhD, PGDip Senior Research Fellow University of Southampton Southampton, United Kingdom

Heather Murphy, MSN, RN, NP-C Palliative Care Coordinator – Neonatal Intensive Care Unit Children’s Hospital of the King’s Daughters Norfolk, Virginia

Juliana H, O’Brien, MSN, FNP-BC Division of Palliative and Supportive Care Nemours/Alfred I. DuPont Hospital for Children Wilmington, Delaware

Edith O’Neil-Page, RN, MSN, AOCNS Huntington, Vermont

Caroline Olney, BS, RN, MSN, NP, ACHPN Palliative Care Nurse Practitioner

University of California, San Francisco Supportive and Palliative Care Service Zuckerberg San Francisco General Hospital and Trauma Center San Francisco, California

Joan T. Panke, MA, BSN, ACHPN

Palliative Care Specialist/Palliative Care NP Washington, District of Columbia

Purvi Patel, MD, MBA

Assistant Clinical Professor of Medicine Division of Supportive Medicine City of Hope Medical Center Duarte, California

Sunita K. Patel, PhD

Associate Professor Department of Supportive Care Medicine City of Hope Duarte, California

Amy Petrinec, PhD, RN Assistant Professor

Kent State University College of Nursing Kent, Ohio

Maryjo Prince-Paul, PhD, RN, FPCN

Associate Professor Frances Payne Bolton School of Nursing Cleveland, Ohio

Carey T. Ramirez, ANP-C, ACHPN Palliative Medicine Service

UCHealth North Loveland, Colorado

Anne Reb, NP, PhD

Assistant Professor Nursing Research & Education City of Hope Medical Center Duarte, California

Rebekah Reimer, BSN, RN, CCRN Palliative Care Nurse

Providence Little Company of Mary, Torrance Torrance, California

Melinda Ring, MD, FACP, ABOIM Director, Osher Center for Integrative Medicine Northwestern Medicine

Drs. Pat and Carl Greer Distinguished Physician in Integrative Medicine

Clinical Associate Professor of Medicine and Medical Social Sciences

Northwestern University Feinberg School of Medicine Chicago, Illinois

Benjamin Roberts, MSN, RN

Registered Nurse

Johns Hopkins Hospital Baltimore, Maryland

Nancy Robertson, MSN, ANP-BC, ACHPN Palliative Care Nurse Practitioner

University of Colorado Masters of Palliative Care Faculty Anschutz Medical Campus Aurora, Colorado

Quinten Robertson, DNP, FNP-BC Healthcare at its Best Staffing (HCIBS), LLC Houston, Texas

Catherine Rogers, MSW Palliative Care Social Worker Medical University of South Carolina Charleston, South Carolina

Maggie C. Root, MSN, RN, CPNP-AC, CHPPN Integrated Pediatric Pain & Palliative Care UCSF Benioff Children’s Hospital San Francisco, California

William Rosa, MS, RN, LMT, AHN-BC, AGPCNP-BC, CCRN-CMC

Robert Wood Johnson Future of Nursing Scholar University of Pennsylvania School of Nursing Philadelphia, Pennsylvania

Michael Ryan, PsyD Senior Staff Psychologist Clinical Director, Supportive Oncology Services Henry Ford Cancer Institute Henry Ford Health System Detroit, Michigan

Jaroslava Salman, MD, FAPM Assistant Professor of Psychiatry Department of Supportive Care Medicine City of Hope Duarte, California

Seanell D. San Andres, CTRS Department of Rehabilitation City of Hope National Medical Center Duarte, California

Elizabeth E. Schack, GNP-BC, CNS, ACHPN Senior Palliative Care Nurse Practitioner Division of Geriatrics and Palliative Medicine New York Presbyterian Hospital/Weill Cornell Medical Center New York, New York

Karla Schroeder, DNP, RN, MHA, ANP-BC, NE-BC Director of Palliative Care and Geriatrics Stanford Medicine Stanford, California

Margaret A Schwartz, MSN, APRN, CNRN Northwestern Medicine Group Chicago, Illinois

Heather Shaw, RN, MS, GNP-BC Manager, Inpatient Palliative Medicine Stanford Health Care Stanford, California

Denice Sheehan, PhD, RN, FPCN Kent State University College of Nursing Kent, Ohio

Jacquelyn Slomka, PhD, RN Independent Scholar and Consultant Cleveland, Ohio

Angel Smothers, DNP, APRN, FNP-BC Certified Hospice and Palliative Care Nurse Certified Faith Community Nurse West Virginia University School of Nursing Clinical Assistant Professor Morgantown, West Virginia

Kelli I. Stajduhar, PhD, MSN, BSN, FCAHS

Professor and Associate Director, Research and Scholarship, School of Nursing

Research Affiliate, Institute on Aging and Lifelong Health University of Victoria Victoria, Canada

Pamela Stephenson, PhD, RN, OACNS

Kent State University College of Nursing Kent, Ohio

Macy Stockdill, BSN, RN PhD student

The University of Alabama at Birmingham School of Nursing Birmingham, Alabama

Sarah Stroe, BA, ASW, MSW

Palliative Care Social Worker

San Francisco Department of Public Health

Supportive and Palliative Care Service

Zuckerberg San Francisco General Hospital and Trauma Center

San Francisco, California

Virginia Sun, PhD, RN

Assistant Professor

Division of Nursing Research & Education

Department of Population Sciences City of Hope Duarte, California

Barbara Sutton, MSN, APN-BC, ACHPN

Palliative Care Nurse Practitioner

Amita Healthcare Elk Grove Village, Illinois

Keith M. Swetz, MD, MA, FACP, FAAHPM, HMDC

Section Chief/Medical Director, Palliative Care

Birmingham Veterans Affairs Medical Center University of Alabama, Birmingham Center for Palliative and Supportive Care

Associate Professor of Medicine University of Alabama, Birmingham School of Medicine Birmingham, Alabama

Elizabeth Johnston Taylor, PhD, RN Professor, School of Nursing Loma Linda University

Loma Linda, California

Richard A. Taylor, DNP, CRNP, APN-BC

Assistant Professor

Acute, Chronic and Continuing Care Department

The University of Alabama at Birmingham School of Nursing Birmingham, Alabama

Cheryl Ann Thaxton, MN, RN, CPNP-BC, FNP-BC, CHPPN

Adult and Pediatric Palliative Care Nurse Practitioner University of Texas Southwestern Medical Center Dallas, Texas

Charles P. Tilley, MS, ANP-BC, ACHPN, CWOCN

Assistant Director of Graduate Simulation

New York University Rory Meyers College of Nursing New York, New York

Tami Tittelfitz, DNP, NP-C Nurse Practitioner Division of Thoracic Surgery Department of Surgery City of Hope Duarte, California

Jennifer A. Tschanz, MSN, FNP, AOCNP Nurse Practitioner

Department of Hematology Oncology

Naval Medical Center San Diego, California

Ruby A. Weller, CRNP Division of Pulmonary, Critical Care, and Sleep Medicine Geisinger Medical Center Danville, Pennsylvania

Rachel Wells, MSN, RN, CNL Doctoral Candidate School of Nursing

University of Alabama at Birmingham (UAB) Birmingham, Alabama

Tracey Whitley, MSN, RNC-OB, C-EFM Clinical Practice Specialist Women and Children Services Women’s Health Clinical Education Winston-Salem, North Carolina

Dorothy Wholihan, DNP, AGPCNP-BC, ACHPN Director, Palliative Care Specialty Program New York University College of Nursing New York, New York

Clareen Wiencek, PhD, RN, ACHPN, ACNPC Associate Professor and Director of Advanced Practice University of Virginia School of Nursing Charlottesville, Virginia

Amy M. Williams, PhD, LP Senior Staff Psychologist Director, Psychology Practicum Program Department of Otolaryngology – Head & Neck Surgery Henry Ford Health System Clinical Assistant Professor Wayne State University School of Medicine Detroit, Michigan

Elaine Wittenberg, PhD Associate Professor Communication Studies California State University Los Angeles, California

Alexander Wolf, DNP, RN, ACNP, CNS Nurse Practitioner, Palliative Care Augusta Medical Group Fishersville, Virginia

Emma Wolfe, MPH, CHES Senior Health Education Specialist Patient, Family and Community Education Department of Supportive Care Medicine City of Hope Duarte, California

Rebecca Wright, PhD, BSc (Hons), RN

Assistant Professor

Johns Hopkins School of Nursing

Baltimore, Maryland

Finly Zachariah, MD, FAAFP Assistant Clinical Professor Department of Supportive Care Medicine

City of Hope National Medical Center

Duarte, California

SECTION I

General Principles

CHAPTER 1 Introduction to Palliative Care

Betty Rolling Ferrell

Key Points

◆ Palliative care is a vital and necessary tool for nurses caring for an aging population.

◆ Properly assessing and managing the symptoms of chronic and advanced disease ensures that patients have the best quality of life possible during their illness journey.

◆ Psychosocial support and spiritual care are a fundamental part of palliative care that supports patients and families and helps them find hope and meaning in illness and in death.

◆ Palliative care must be made available to special patient populations: the poor, the homeless, the elderly, the drug­addicted, veterans, and those patients affected with mental illness among others.

The Textbook as a Resource

This fifth edition of the Textbook of Palliative Nursing comes at a time when palliative care is at the center of a healthcare system in need of urgent solutions to overwhelming challenges. An aging population, an uncertain healthcare payment system, growing chronic illnesses, and escalating costs have created opportunities to extend palliative care into settings and populations which were not even thought of when the last edition of this Textbook appeared only a few years ago.

Since the first edition of the Textbook in 2001, our hope as editors has always been that it would serve as an evidence­based resource for nurses searching for practical applications at the bedside. I keep a copy at my desk, at arms­length. Over the years, my own quality measure of the book has been to reach for it often to see if I can find useful information as I address daily questions in my professional life as a nurse and researcher. Almost always, I find the Textbook to, indeed, be a resource to answer real questions from real clinicians about real patients and families.

The Patient

The true test of the Textbook occurs at the bedside. Does this book really tell the story of the people we serve? As you read its pages, can you see the face of the patient?

As I prepared to edit this fifth edition, I had the opportunity to be involved in the care of an 85­year­old woman, Grace, who had chronic obstructive pulmonary disease (COPD). I had known

Grace for approximately 5 years and witnessed her pulmonary disease progress from a well­managed chronic illness to become a life­altering disease that tried hard to squelch her radiant spirit and succeeded only in the last days of her life.

Grace was born and lived in Europe for the first 20 years of her life. She was a tall, beautiful, spirited woman whose last job before coming to America was as a flamenco dancer in a cabaret—quite a colorful job for a woman in 1950. She came to the United States for further adventure and began a long career as a “Girl Friday” in the movie studios of Hollywood. The next decades were filled with what she recalled as a wonderful life, filled with travel, interesting friends, constant stimulation, and glamour. Grace herself was a picture of glamour—she was tall and graceful, always impeccably dressed, and never without her French perfume.

At the age of 60, Grace was diagnosed with uterine cancer, and her fast­paced life came to an abrupt halt as she endured surgery and chemotherapy. She recovered completely but never returned to work. She did continue to enjoy her Hollywood friends, lunches, and travel to her family home in Europe.

Her zest for life was matched by a very deep religious faith, born from a devout Anglican religious upbringing from childhood. She was a person whose life was full of friends, family, cherished memories of her career, and a desperate desire to maintain her independence and her dignity.

Grace’s pulmonary disease, which she attributed to the Hollywood days of women smoking, slowly took over her life. Her frequent respiratory infections limited her outings, and she eventually became oxygen­dependent. Although her body began to decline, her spirit persisted, and I watched over the course of the last 5 years of her life as the COPD took its toll on this beautiful woman and threatened her survival.

Grace insisted on living alone and refused assistance in her home. She had one short stay in assisted living after a hospitalization but then left the facility against all advice. She was determined to have her privacy at home. Fortunately, she was part of a healthcare system that seemed perfectly in step with Grace’s needs. She received home care services and then later progressed to home­based palliative care. The palliative care team was astute in recognizing her decline over her last year of life but was also respectful of her intense need for independence.

Her COPD then seemed to advance over the course of a couple of months with several bouts of pneumonia and resultant challenges with dyspnea, insomnia, fatigue, and anorexia. She gave in and

finally accepted the help of nursing assistants in her home, largely motivated by her desire to be well­dressed and to maintain her appearance despite the obvious decline in her body. One of her last outings was to attend a book signing by a Hollywood celebrity she had admired for years, a man who had just published his memoirs. This 85­year­old dyspneic, cachectic woman was transformed back into a young ingénue, totally enamored by a leading man.

A few months before Grace died, while visiting her at home, I noticed that she had recently framed a photograph of herself with a man, a picture that was probably taken of her in her late 20s. When I asked about the photo, she became very uncharacteristically quiet and serious and then she said, “I have loved three men in my life.” I sat silently, recognizing that the person before me was reflecting deeply on her life. What followed was a lovely conversation as I listened intently and she told me about each of her three loves. As the stories were shared, I listened to this elegant woman tell her life story of loves, losses, betrayals, of good choices and bad; I heard this woman grieve for children she had never had, of her life that was both full and vibrant, but at times a life that was lonely and unfulfilled.

Just a few weeks before Grace died, the home­based palliative care program advanced her care into the hospice program. She remained in her home after finally accepting 24­hour care: her symptoms were well­controlled, and she insisted on getting all her affairs in order, advance directives completed, and everything wellorganized—the perfect “Girl Friday” to the end.

My last visit with Grace was 6 days before she died. I had visited her over the years in my role as a volunteer and Eucharistic visitor through our shared faith community. We talked about her declining health, I shared communion with her, and we ended the visit by her telling me about her days as a flamenco dancer. It was the perfect last visit. Her death was peaceful, calm, and “Graceful.”

The Textbook

Grace is in so many ways the model case example of the palliative care patients that we serve at the time of publication of this 5th edition of the Textbook. She represents an aging population, a person who has survived serious illnesses but has lived long enough to develop other serious illnesses with a prolonged trajectory of care.

How can this Textbook guide nurses to care for the “Graces” in our service? I think of Grace as I look over the contents of this book. Section I of the book presents General Principles, including chapters on national palliative care guidelines, hospital­based palliative care, principles of patient and family assessment, communication, and advance care planning. This section includes a chapter on palliative care team effectiveness, which is very reflective of the care Grace received. Her final months of life could have been quite different as a person with COPD, living alone, and at great risk of dying hospitalized and with severe uncontrolled symptoms.

Section II of the Textbook is on symptom assessment and management. Grace, like so many of our patients, at some point in her illness probably had almost every symptom listed across the

23 chapters in Section II. As these chapters illustrate, her care was dependent on competent symptom assessment, the best of pharmacologic and nonpharmacologic treatments, and attention to side effects such as pain, fatigue, anorexia, cachexia, dyspnea, and a whole host of other debilitating medical sequelae.

Section III of the Textbook introduces psychosocial and spiritual support, areas also critical to the whole­person care Grace needed and the care that all patients deserve. The chapters focus on spiritual care assessments and interventions, concepts of hope and meaning at the end of life, supporting families through the dying process and bereavement, and planning for actual death.

Section IV addresses the unique needs of Special Patient Populations. This part includes chapters addressing issues such as culture; older adults in the community; the poor, homeless, and underserved; veterans; and other populations in special need of palliative care, such as patients with mental illness or personality disorders, drug­addicted patients, AIDS patients, and pulmonary/ critical care and heart failure patients. This section also includes chapters on organ donation and cancer survivorship, so important today to many receiving palliative care.

The fifth section reviews palliative care across settings. Grace— not at all distinct from most patients living with serious illness—was cared for across many settings, including home care, home­based palliative care, hospice, the intensive care unit, the emergency department, and the outpatient setting. This Textbook is dedicated to providing excellent care for patients across all settings of care and recognizes that nurses are the constant in each setting. This unit also addresses palliative care in rural communities; improving the quality of care across all settings; the role of the nurse caring for patients receiving palliative surgery or chemotherapy; and the role of PT, OT, and other palliative care therapies. This edition includes a new chapter on value­based care. Grace’s care was not only highquality care that met her needs but also delivered by a coordinated system that undoubtedly avoided costly admissions, futile care, and truly reflected her values and goals.

Section VII, Special Issues for the Nurse in End­of­Life Care, recognizes that nurses, as the ever­present support for end­of­life patients, encounter ethical considerations unique to this type of care and that they serve as advocates for this very vulnerable population. The chapters in this section address the need for nurses to practice self­ care, the importance of nursing education and research, the role of the advanced practice nurse, the concept of caring in palliative nursing, and palliative care on the global scale of today’s world.

Summary

As this fifth edition of the Textbook is published, I will again apply the “arm’s­length” test of quality. As with earlier editions of the Textbook, this edition will be within easy reach in my office as I address the daily questions of nursing and research that arise in my professional life. I am confident that this book reflects the care that patients like Grace need and deserve and that it will serve as a valuable tool for the palliative care nurse at the bedside.

National Consensus Project for Quality Palliative Care

Assuring Quality Palliative Care through Clinical Practice Guidelines

Constance M. Dahlin

Key Points

◆ The National Consensus Project for Quality Palliative Care (NCP)’s Clinical Practice Guidelines promote access to and the development of comprehensive quality palliative care through the delineation of eight key domains of care.

◆ The NCP’s Clinical Practice Guidelines are the basis of specialty palliative care certification for hospitals, hospices, and home health agencies as well as professional certifications.

◆ The NCP’s Clinical Practice Guidelines are the foundation of specialty palliative care education.

The National Consensus Project Initiative

The poor status of care at end of life and dying in America was the backdrop for the development of the National Consensus Project for Quality Palliative Care (NCP). Shortly after the Institute of Medicine (IOM)’s two separate reports on dying in America for adults in late 1997 and children in early 2000, national discussion began about how to improve care.1,2 With hospice care already codified within the Medicare Hospice Benefit, a strategy to create guidelines for people ineligible for hospice, but palliative care–appropriate, was essential. In 2001, hospice and palliative care leaders convened in New York City to discuss standards in palliative care to guide the growth and expansion of palliative care in the United States. This meeting laid the foundation for the creation of the NCP (Box 2.1).

The first edition of the Clinical Practice Guidelines for Palliative Care was published in 2004. In 2005, the structure of the NCP moved to one of collaborative governance under the National Coalition of Hospice and Palliative Care. In 2006, the National Quality Forum (NQF) used the Clinical Practice Guidelines as a basis of its document A National Framework and Preferred Practices for Palliative and Hospice Care Quality: A Consensus Report 3

With a mission to “improve American healthcare through the endorsement of the consensus­based national standards for measurement and public reporting of healthcare performance data,”3 this adoption by NQF was significant in its support of hospice palliative care standards and preferred practices, with implications for

reimbursement, internal and external quality measurement, regulation, and accreditation.3

In 2009, just 5 years after the initial release of the NCP Clinical Practice Guidelines, the landscape of palliative care had changed. The number of palliative care and hospice programs had substantially

Box 2.1 History of the National Consensus Project for Quality Palliative Care Clinical Practice Guidelines

2001 Meeting in New York City of national palliative care leaders.

2002 Development of the clinical guidelines.

2003 Initial Review by advisory committee.

2003 Release of the first edition of the Clinical Practice Guidelines for Quality Palliative Care in March at the Annual Assembly received official endorsement by 40 organizations and associations.

2005 Disseminated to 90 organizations and associations.

2006 Served as the basis of NQF’s document A National Framework and Preferred Practices for Palliative and Hospice Care Quality: A Consensus Report.

2009 Release of the second edition of the Clinical Practice Guidelines for Quality Palliative Care at the Annual Assembly of the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA). Aspects of palliative care featured in review of healthcare reform under the Obama administration.

2011 The Clinical Practice Guidelines for Quality Palliative Care used as underlying principles for the Joint Commission Advanced Palliative Care Certification.

2013 Release of the third edition at the Annual Assembly of the AAHPM and HPNA endorsed by 54 organizations and associations.

2017 Funding for the creation of community­based palliative care guidelines specific to care in the home, skilled facility, assisted­living facility, group homes, shelters, prisons, etc.

2018 Expected completion of new guidelines with specific attention to palliative care in the community.