Clinical Practice Guidelines For Quality Palliative Care

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Clinical PracticeGuidelinesforQualityPalliative Care4th edition

Publisher:National Coalition for Hospice and Palliative CareClinical Practice Guidelines for Quality Palliative Care, 4th editionCopyright 2018 National Coalition for Hospice and Palliative CareThis publication is copyrighted. We are making such material available in our efforts to advanceunderstanding of issues related to hospice and palliative care. No part of this publication may bereproduced, 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 liabilityfor any errors or omissions in the National Consensus Project’s Clinical Practice Guidelines for QualityPalliative Care, 4th edition. The information contained is provided on an “as is” basis with no guaranteesof 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 fullresponsibility for its use. While the National Coalition for Hospice and Palliative Care has taken everyprecaution 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 medicaladvice, or be deemed inclusive of all proper methods of care nor exclusive of other methods of carereasonably directed to obtaining the same results. The ultimate judgment regarding the propriety ofany specific therapy must be made by the physician and/or health care provider and the patient in lightof all the circumstances presented by the individual patient, and the known variability and biologicalbehavior of the disease. These guidelines reflect the best available data and information at the time theguidelines were prepared. The results of future studies may require revisions to the recommendationsin these guidelines to reflect new data or information.ISBN # 978-0-692-17943-7For information, contact:National Coalition for Hospice and Palliative CareP.O. Box 29709Richmond, VA ww.nationalcoalitionhpc.org/ncpSuggested Citation:National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality PalliativeCare, 4th edition. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018. https://www.nationalcoalitionhpc.org/ncp.

Table of ContentsForeword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iPalliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iHistory of the National Consensus Project’s Guidelines . . . . . . . . . . . . . . . . . . . . . . iiiNCP Guidelines, 4th edition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vIntroduction to the 4th edition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . viiSummary of Key Revisions in Each Domain . . . . . . . . . . . . . . . . . . . . . . . . . . . . viiiSystematic Review of Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . ixKey Concepts / Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ixUsing the NCP Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .xConclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiAcknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiiDomain 1: Structure and Processes of Care . . . . . . . . . . . . . . . . . . . . . . . . . 1Guideline 1.1Interdisciplinary Team . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1Guideline 1.2Comprehensive Palliative Care Assessment . . . . . . . . . . . . . . . . . . . 2Guideline 1.3Palliative Care Plan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3Guideline 1.4Continuity of Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . 5Guideline 1.5Care Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5Guideline 1.6Interdisciplinary Team Education . . . . . . . . . . . . . . . . . . . . . . . . .6Guideline 1.7Coordination of Care and Care Transitions . . . . . . . . . . . . . . . . . . . .7Guideline 1.8Emotional Support to the Interdisciplinary Team . . . . . . . . . . . . . . . . .7Guideline 1.9Continuous Quality Improvement . . . . . . . . . . . . . . . . . . . . . . . . 7Guideline 1.10Stability, Sustainability, and Growth . . . . . . . . . . . . . . . . . . . . . . . 8Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . .9Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9Domain 2: Physical Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . .Guideline 2.1Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13Guideline 2.2Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 14Guideline 2.3Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14Guideline 2.4Ongoing Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 16Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1713

Table of ContentsDomain 3: Psychological and Psychiatric Aspects of Care . . . . . . . . . . . . . . . . . 20Guideline 3.1Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20Guideline 3.2Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 21Guideline 3.3Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22Guideline 3.4Ongoing Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 23Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24Domain 4: Social Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26Guideline 4.1Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26Guideline 4.2Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 27Guideline 4.3Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28Guideline 4.4Ongoing Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 29Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30Domain 5: Spiritual, Religious, and Existential Aspects of Care . . . . . . . . . . . . . .Guideline 5.1Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32Guideline 5.2Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 33Guideline 5.3Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34Guideline 5.4Ongoing Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3432Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 35Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35Domain 6: Cultural Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . .Guideline 6.1Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38Guideline 6.2Communication and Language . . . . . . . . . . . . . . . . . . . . . . . . . 39Guideline 6.3Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 40Guideline 6.4Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 42Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4338

Table of ContentsDomain 7: Care of the Patient Nearing the End of Life . . . . . . . . . . . . . . . . . .Guideline 7.1Interdisciplinary Team . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45Guideline 7.2Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 46Guideline 7.3Treatment Prior to Death . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47Guideline 7.4Treatment During the Dying Process and Immediately After Death . . . . . . 47Guideline 7.5Bereavement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4845Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 49Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50Domain 8: Ethical and Legal Aspects of Care . . . . . . . . . . . . . . . . . . . . . . .Guideline 8.1Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52Guideline 8.2Legal Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53Guideline 8.3Screening and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . 55Guideline 8.4Treatment and Ongoing Decision-Making . . . . . . . . . . . . . . . . . . . 5652Clinical and Operational Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57Essential Palliative Care Skills Needed by All Clinicians . . . . . . . . . . . . . . . . . . . . . . 57Key Research Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57Practice Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57Appendix I: Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60Appendix II: Tools and Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . .70Domain 1: Structure and Processes of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70Domain 2: Physical Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71Domain 3: Psychological and Psychiatric Aspects of Care . . . . . . . . . . . . . . . . . . . . . 74Domain 4: Social Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75Domain 5: Spiritual, Religious, and Existential Aspects of Care . . . . . . . . . . . . . . . . . . 76Domain 6: Cultural Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77Domain 7: Care of the Patient Nearing the End of Life . . . . . . . . . . . . . . . . . . . . . . 78Domain 8: Ethical and Legal Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . 79Appendix III: Contributors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85

Table of ContentsAppendix IV: Scoping Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .87Scoping Review Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87Review and Inclusion Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90Domain 1: Structure and Processes of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90Domain 2: Physical Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113Domain 3: Psychological and Psychiatric Aspects of Care . . . . . . . . . . . . . . . . . . . . 126Domain 4: Social Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132Domain 5: Spiritual, Religious, and Existential Aspects of Care . . . . . . . . . . . . . . . . . 136Domain 6: Cultural Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142Domain 7: Care of the Patient Nearing the End of Life . . . . . . . . . . . . . . . . . . . . . 152Domain 8: Ethical and Legal Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . 158Appendix V: Endorsing and Supporting Organizations . . . . . . . . . . . . . . . . . . 165A systematic review of the evidence for the NCP Guidelines, 4th edition, was conducted by theRAND Evidence-based Practice Center. The complete findings are published online in the Journalof Pain and Symptom Management (doi: 10.1016/j.jpainsymman.2018.09.008).

ForewordIndividuals who are seriously ill need care that is seamless acrosssettings, can rapidly respond to needs and changes in healthstatus, and is aligned with patient-family preferences and goals.Patients of all ages, living in all areas of the country, have unmetcare needs that cause a burden on families and the US health caresystem.In this document, seriousillness is defined as “a healthcondition that carries a highrisk of mortality and eithernegatively impacts a person’sdaily function or quality oflife or excessively strains theircaregiver” (Kelley and BollensLund, 2018).Providing “crisis-care” to individuals with a serious illness whoseongoing care needs are poorly managed has resulted in increasedhealth care spending that does not necessarily improve quality oflife. Care of individuals with serious illness is often “marked byinadequate symptom control and low patient and family perceptionsof the quality of care; and potentially discordant with personal goals and preferences.”1 Patients withserious illness and their family caregivers are seldom able to have their care needs reliably met, leadingto symptom exacerbation crises and emergency department visits and/or repeated hospitalizations.2Palliative CarePalliative care focuses on expert assessment and management of pain and other symptoms, assessmentand 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-centeredapproach to care, providing people living with serious illness relief from the symptoms and stress of anillness. Through early integration into the care plan for the seriously ill, palliative care improves quality oflife 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 treatmentsof 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 andpreferences and determining how best to achieve them. I

Clinical Practice Guidelines for Quality Palliative Care, 4th edition i Foreword Individuals who are seriously ill need care that is seamless across settings, can rapidly respond to needs and changes in health

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