Clinical Practice Guidelines for Quality Palliative Care

Clinical Practice Guidelines for Quality Palliative Care

4th edition

Publisher: National Coalition for Hospice and Palliative Care Clinical Practice Guidelines for Quality Palliative Care, 4th edition

Copyright 2018 National Coalition for Hospice and Palliative Care

This publication is copyrighted. We are making such material available in our efforts to advance understanding of issues related to hospice and palliative care. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, mechanical, electronic, photocopying, recording or otherwise, without prior written permission of the publisher.

Disclaimer: The National Coalition for Hospice and Palliative Care assumes no responsibility or liability for any errors or omissions in the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care, 4th edition. The information contained is provided on an "as is" basis with no guarantees of completeness, accuracy, usefulness or timeliness and without any warranties of any kind whatsoever, express or implied. The information is intended for non-commercial use for the user who accepts full responsibility for its use. While the National Coalition for Hospice and Palliative Care has taken every precaution to ensure that the content is current and accurate, errors can occur.

Adherence to these guidelines will not ensure successful treatment in every situation. Furthermore, these guidelines should not be interpreted as setting a standard of care, considered to be medical advice, or be deemed inclusive of all proper methods of care nor exclusive of other methods of care reasonably directed to obtaining the same results. The ultimate judgment regarding the propriety of any specific therapy must be made by the physician and/or health care provider and the patient in light of all the circumstances presented by the individual patient, and the known variability and biological behavior of the disease. These guidelines reflect the best available data and information at the time the guidelines were prepared. The results of future studies may require revisions to the recommendations in these guidelines to reflect new data or information.

ISBN # 978-0-692-17943-7

For information, contact: National Coalition for Hospice and Palliative Care P.O. Box 29709 Richmond, VA 23242





Suggested Citation: National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 4th edition. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018. . ncp.

Table of Contents

Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . i Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . i History of the National Consensus Project's Guidelines . . . . . . . . . . . . . . . . . . . . . . iii NCP Guidelines, 4th edition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . v

Introduction to the 4th edition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vii Summary of Key Revisions in Each Domain . . . . . . . . . . . . . . . . . . . . . . . . . . . . viii Systematic Review of Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . ix Key Concepts / Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix Using the NCP Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .x

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xii

Domain 1: Structure and Processes of Care . . . . . . . . . . . . . . . . . . . . . . . . . 1 Guideline 1.1 Interdisciplinary Team . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1 Guideline 1.2 Comprehensive Palliative Care Assessment . . . . . . . . . . . . . . . . . . . 2 Guideline 1.3 Palliative Care Plan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3 Guideline 1.4 Continuity of Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Guideline 1.5 Care Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5 Guideline 1.6 Interdisciplinary Team Education . . . . . . . . . . . . . . . . . . . . . . . . .6 Guideline 1.7 Coordination of Care and Care Transitions . . . . . . . . . . . . . . . . . . . .7 Guideline 1.8 Emotional Support to the Interdisciplinary Team . . . . . . . . . . . . . . . . .7 Guideline 1.9 Continuous Quality Improvement . . . . . . . . . . . . . . . . . . . . . . . . 7 Guideline 1.10 Stability, Sustainability, and Growth . . . . . . . . . . . . . . . . . . . . . . . 8 Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . .9 Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9 Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Domain 2: Physical Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Guideline 2.1 Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Guideline 2.2 Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 Guideline 2.3 Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 Guideline 2.4 Ongoing Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 16 Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Table of Contents

Domain 3: Psychological and Psychiatric Aspects of Care . . . . . . . . . . . . . . . . . 20 Guideline 3.1 Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Guideline 3.2 Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Guideline 3.3 Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 Guideline 3.4 Ongoing Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 23 Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Domain 4: Social Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Guideline 4.1 Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Guideline 4.2 Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 Guideline 4.3 Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 Guideline 4.4 Ongoing Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29 Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 29 Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29 Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

Domain 5: Spiritual, Religious, and Existential Aspects of Care . . . . . . . . . . . . . . 32 Guideline 5.1 Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 Guideline 5.2 Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Guideline 5.3 Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34 Guideline 5.4 Ongoing Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34 Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 35 Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35

Domain 6: Cultural Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 Guideline 6.1 Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 Guideline 6.2 Communication and Language . . . . . . . . . . . . . . . . . . . . . . . . . 39 Guideline 6.3 Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 40 Guideline 6.4 Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41 Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42 Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 42 Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42 Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

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Domain 7: Care of the Patient Nearing the End of Life . . . . . . . . . . . . . . . . . . 45 Guideline 7.1 Interdisciplinary Team . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45 Guideline 7.2 Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 46 Guideline 7.3 Treatment Prior to Death . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47 Guideline 7.4 Treatment During the Dying Process and Immediately After Death . . . . . . 47 Guideline 7.5 Bereavement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48 Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49 Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 49 Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50 Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50

Domain 8: Ethical and Legal Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . 52 Guideline 8.1 Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52 Guideline 8.2 Legal Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53 Guideline 8.3 Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 55 Guideline 8.4 Treatment and Ongoing Decision-Making . . . . . . . . . . . . . . . . . . . 56 Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57 Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 57 Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57 Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

Appendix I: Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60

Appendix II: Tools and Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70 Domain 1: Structure and Processes of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70 Domain 2: Physical Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71 Domain 3: Psychological and Psychiatric Aspects of Care . . . . . . . . . . . . . . . . . . . . . 74 Domain 4: Social Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75 Domain 5: Spiritual, Religious, and Existential Aspects of Care . . . . . . . . . . . . . . . . . . 76 Domain 6: Cultural Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77 Domain 7: Care of the Patient Nearing the End of Life . . . . . . . . . . . . . . . . . . . . . . 78 Domain 8: Ethical and Legal Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . 79

Appendix III: Contributors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85

Table of Contents Appendix IV: Scoping Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87 Scoping Review Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87 Review and Inclusion Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90 Domain 1: Structure and Processes of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90 Domain 2: Physical Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113 Domain 3: Psychological and Psychiatric Aspects of Care . . . . . . . . . . . . . . . . . . . . 126 Domain 4: Social Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132 Domain 5: Spiritual, Religious, and Existential Aspects of Care . . . . . . . . . . . . . . . . . 136 Domain 6: Cultural Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142 Domain 7: Care of the Patient Nearing the End of Life . . . . . . . . . . . . . . . . . . . . . 152 Domain 8: Ethical and Legal Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . 158 Appendix V: Endorsing and Supporting Organizations . . . . . . . . . . . . . . . . . . 165

A systematic review of the evidence for the NCP Guidelines, 4th edition, was conducted by the RAND Evidence-based Practice Center. The complete findings are published online in the Journal of Pain and Symptom Management (doi: 10.1016/j.jpainsymman.2018.09.008).

Foreword

Individuals who are seriously ill need care that is seamless across settings, can rapidly respond to needs and changes in health status, and is aligned with patient-family preferences and goals. Patients of all ages, living in all areas of the country, have unmet care needs that cause a burden on families and the US health care system.

Providing "crisis-care" to individuals with a serious illness whose

In this document, serious illness is defined as "a health condition that carries a high risk of mortality and either negatively impacts a person's daily function or quality of life or excessively strains their

ongoing care needs are poorly managed has resulted in increased health care spending that does not necessarily improve quality of life. Care of individuals with serious illness is often "marked by

caregiver" (Kelley and BollensLund, 2018).

inadequate symptom control and low patient and family perceptions

of the quality of care; and potentially discordant with personal goals and preferences."1 Patients with

serious illness and their family caregivers are seldom able to have their care needs reliably met, leading

to symptom exacerbation crises and emergency department visits and/or repeated hospitalizations.2

Palliative Care

Palliative care focuses on expert assessment and management of pain and other symptoms, assessment and support of caregiver needs, and coordination of care. Palliative care attends to the physical, functional, psychological, practical, and spiritual consequences of a serious illness. It is a person- and family-centered approach to care, providing people living with serious illness relief from the symptoms and stress of an illness. Through early integration into the care plan for the seriously ill, palliative care improves quality of life for the patient and the family.

Palliative care is:

? Appropriate at any stage in a serious illness, and it is beneficial when provided along with treatments of curative or life-prolonging intent.

? Provided over time to patients based on their needs and not their prognosis.

? Offered in all care settings and by various organizations, such as physician practices, health systems, cancer centers, dialysis units, home health agencies, hospices, and long-term care providers.

? Focused on what is most important to the patient, family, and caregiver(s), assessing their goals and preferences and determining how best to achieve them.

? Interdisciplinary to attend to the holistic care needs of the patient and their identified family and caregivers.

Palliative care principles and practices can be delivered by any clinician caring for the seriously ill,

and in any setting. All clinicians are encouraged to acquire core skills and knowledge regarding palliative

care and refer to palliative care specialists as needed. Analogous to the management of hypertension

and heart disease by primary clinicians who may turn to cardiology

specialists and clinical practice guidelines for consultation or management of more complex cases, specialist level palliative

Note: Words bolded in red are defined in the Glossary.

Clinical Practice Guidelines for Quality Palliative Care, 4th edition

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Foreword

care is available for consultation, teaching, research, and care of the most complex patients living with a serious illness. Specialist level palliative care is delivered through an interdisciplinary team with the professional qualifications, training, and support needed to deliver optimal patient- and family-centered care.

Recognizing the changes to the practice of palliative care in all care settings, the National Consensus Project for Quality Palliative Care defines palliative care as follows:

Beneficial at any stage of a serious illness, palliative care is an interdisciplinary care delivery system designed to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering to optimize quality of life for patients, their families and caregivers. Palliative care can be delivered in any care setting through the collaboration of many types of care providers. Through early integration into the care plan of seriously ill people, palliative care improves quality of life for both the patient and the family.

In addition, specific definitions of palliative care are applicable depending on the audience and context within which the definition is used:

The 2015 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life report defines palliative care as, "Care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness and their families. Palliative care may begin early in the course of treatment for a serious illness and may be delivered in a number of ways across the continuum of health care settings, including in the home, nursing homes, long-term acute care facilities, acute care hospitals, and outpatient clinics."3 The report explicitly states that care outcomes are optimized when palliative care begins early after the diagnosis of a serious illness, is delivered at the same time as curative or disease-modifying treatments, and is available in all settings where patients and families need care.4

The Centers for Medicare and Medicaid Services defines palliative care as, "patient and family centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice."5

The Center to Advance Palliative Care and the American Cancer Society developed a definition of palliative care (based on public opinion research), "Palliative care is specialized medical care for people with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.

The Institute of Medicine (IOM) offers the following definitions (2015):

Specialty palliative care: "Palliative care that is delivered by health care professionals who are palliative care specialists, such as physicians who are board certified in this specialty; palliative-certified nurses; and palliative care-certified social workers, pharmacists, and chaplains."

Primary palliative care (also known as generalist palliative care): "Palliative care that is delivered by health care professionals who are not palliative care specialists, such as primary care clinicians; physicians who are diseaseoriented specialists (such as oncologists and cardiologists); and nurses, social workers, pharmacists, chaplains, and others who care for this population but are not certified in palliative care."

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Clinical Practice Guidelines for Quality Palliative Care, 4th edition

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