Clinical Practice Guidelines for Quality Palliative Care
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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 http://www.nationalcoalitionhpc.org/ https://www.nationalcoalitionhpc.org/ncp 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. https://www. nationalcoalitionhpc.org/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 Table of Contents 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 In this document, serious status, and is aligned with patient-family preferences and goals . illness is defined as “a health Patients of all ages, living in all areas of the country, have unmet condition that carries a high care needs that cause a burden on families and the US health care risk of mortality and either system . negatively impacts a person’s daily function or quality of Providing “crisis-care” to individuals with a serious illness whose life or excessively strains their ongoing care needs are poorly managed has resulted in increased caregiver” (Kelley and Bollens- health care spending that does not necessarily improve quality of Lund, 2018). life . Care of individuals with serious illness is often “marked by 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