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Oxford Textbook of Palliative Medicine

Oxford Textbook of  Palliative Medicine

SIXTH EDITION

EDITED BY

Nathan I. Cherny

Cancer Pain and Palliative Medicine Service, Department of Oncology, Shaare Zedek Medical Center, Jerusalem, Israel

Marie T. Fallon

St Columba’s Hospice Chair of Palliative Medicine, University of Edinburgh, Edinburgh, UK

Stein Kaasa

European Palliative Care Research Center (PRC), Department of Oncology, Oslo University Hospital; and Institute of Clinical Medicine, University of Oslo, Oslo, Norway

Russell K. Portenoy

MJHS Institute for Innovation in Palliative Care, New York; and Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, NY, USA

David C. Currow

Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia

Great Clarendon Street, Oxford, OX2 6DP, United Kingdom

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 in certain other countries

© Oxford University Press 2021

The moral rights of the authors have been asserted

First Edition published in 1993

Second Edition published in 1998

Third Edition published in 2004

Fourth Edition published in 2010

Fifth Edition published in 2015

Sixth Edition published in 2021

Impression: 1

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 licence or under terms agreed with the appropriate reprographics rights organization. Enquiries 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

Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016, United States of America

British Library Cataloguing in Publication Data

Data available

Library of Congress Control Number: 2020945301

ISBN 978–0–19–882132–8

DOI: 10.1093/med/9780198821328.001.0001

Printed in Great Britain by Bell & Bain Ltd., Glasgow

Oxford University Press makes no representation, express or implied, that the drug dosages in this book are correct. Readers must therefore always check the product information and clinical procedures with the most up-to-date published product information and data sheets provided by the manufacturers and the most recent codes of conduct and safety regulations. The authors and the publishers do not accept responsibility or legal liability for any errors in the text or for the misuse or misapplication of material in this work. Except where otherwise stated, drug dosages and recommendations are for the non-pregnant adult who is not breast-feeding.

Links to third party websites are provided by Oxford in good faith and for information only. Oxford disclaims any responsibility for the materials contained in any third party website referenced in this work.

Preface

This sixth edition of the Oxford Textbook of Palliative Medicine takes us now into the third decade for this textbook. It appears at a time when palliative medicine is able to celebrate substantial progress but also faces substantial ongoing and new challenges.

The past decade has seen major developments in the increasingly widespread acceptance of palliative medicine as a cardinal public health need. This is increasingly reflected in policies, programme development, and resource allocation. The needs of suffering patients have been given voice and an international leadership has developed, facilitating the further expansion of palliative care services in countries, cities, and hospitals that have hitherto not adequately addressed the needs of the many patients with life-limiting illnesses.

Increasingly, palliative medicine is being recognized as an important specialty, worthy of accredited specialist training programmes for physicians and nurses. Despite the challenges of clinical research in vulnerable populations with serious illnesses and often short life expectancy, there is more clinical research in palliative care than ever before. This research is critical for the development of better and more effective evidence-based treatments needed to improve the functions and well-being of patients suffering from a myriad of physical and psychological symptoms that otherwise continue to compromise severely their quality of life.

The complexities of human physiology, psychology, and social interactions, and the diverse ways in which illnesses impact these interacting systems, necessitate a multidisciplinary approach to the provision of palliative medicine. The breadth of this challenge has many implications. Patients with high levels of distress requiring effective relief are to be found in all parts of medicine, in almost every hospital department and community care. Consequently, all healthcare providers need to have a fundamental understanding and familiarity with the principles of palliative care, and have core skills in the evaluation of distress, in the basic management of common symptoms, and in patient communication. All clinicians need to be familiar with the concept that suffering is multidimensional and that approaches to relieve suffering must address physical, psychological, and social dimensions. There is now widespread recognition that patients with more complex problems or clusters of difficult-to-control physical and/or psychological issues, often require the care of clinicians with a higher level of palliative care skills. Palliative care specialists have an important role in the organization, planning, and supervision of care for this group of patients and their families—in teaching and role modelling palliative care skills, as researchers and advocates.

Our field is not without its controversies. Indeed, the purview and scope of palliative care continues to be in a state of flux, as reflected in the ongoing debates and discussions regarding the scope of services provided, particularly in hospices and inpatient palliative care facilities. It is increasingly clear that fulfilling the

commitment to individualized, goal-focused, patient-centred care may be compromised by service structures with limited diagnostic and therapeutic capacities. Indeed, interventions once considered an anathema to palliative care, such as artificial nutrition supports, interventional radiology, ventilatory assistive devices, and vigorous approaches to rehabilitation are now, justifiably, an increasing part of the therapeutic repertoire.

The purview of palliative care is also challenged by the increasingly widespread legalization of regulated assistance in dying in North America, Europe, and, most recently, Australia. This has been a challenge for palliative medicine practitioners. On the one hand, palliative medicine clinicians have a major role in the evaluation of patients with refractory distress, while on the other hand, many palliative care clinicians adhere to the opinion that elective ending of life, through either assisted suicide or euthanasia, is outside the scope of practice. This opinion, however, is not universally held and, in a small number of centres, elective death has become a part of the therapeutic repertoire of palliative care services. Irrespective, the issue is now very much out of the box. Increasingly, palliative care clinicians already find themselves confronted by patients and family members considering this option and seeking skilled professional counsel.

The crisis of opioid-related deaths, particularly in high-income countries, and the increased awareness of potential harms derived from addiction and misuse of opioids has reignited widespread concern that has resulted in new levels of precautions. In some instances, these precautions and regulatory reforms risk compromising access to opioid therapy even for patients for whom long-term opioid therapy could yield benefits that outweigh harms. While there continues to be strong support for the use of opioids to treat severe cancer pain in patients with active illness, and to manage patients with other advanced diseases in the context of end of life care, there is now a new circumspection in the guidelines for the management of pain in long-term cancer survivors and other patients with indolent chronic illness due to an increasing fear of long-term toxicities and addiction.

Palliative care specialists may be increasingly called upon to manage pain and determine the appropriateness of opioid therapy in populations with life-limiting illness and indeterminate life expectancy. This may lead to a gradual change in the core practices for many in this field, a change that should be anticipated and addressed through education, collaborative practice, and advocacy for treatment informed by an individual assessment of risk and benefit.

In our planning of this sixth edition of the Oxford Textbook of Palliative Medicine, we have aimed to rigorously update the text, highlighting the best current evidence-based practices and collective wisdom from more than 160 experts around the world. This edition has been widely reorganized and restructured incorporating many new chapters and new authors.

Finally, it is with the heaviest of hearts we dedicate this sixth edition of the Oxford Textbook of Palliative Medicine to the late Professor Kenneth Fearon. Ken, who was the husband of Professor Marie Fallon, was a surgeon who became a world leader in the research and management of anorexia and cachexia. He embodied

characteristics of care, compassion, curiosity, and rigor in his research. He modelled work–life balance that is so critical in our field, with devotion to both his patients and his beloved wife and children, while still enjoying his passions for golf and good wine. He remains an inspiration to all who knew him.

Professor Kenneth Fearon and family. Reproduced courtesy of Marie Fallon and family.
Nathan I. Cherny
Marie T. Fallon
Stein Kassa
Russell K. Portenoy
David C. Currow

Abbreviations xiii

Contributors xvii

SECTION 1

The worldwide status of palliative care

1.1 International progress in the development of palliative medicine 3

Carlos Centeno, Sheila Payne, and Eduardo Garralda

1.2 Essential medicines for palliative care 13

Lukas Radbruch and Liliana De Lima

1.3 Human rights issues 19

Frank Brennan and Liz Gwyther

1.4 Policy in palliative care 26

Stephen R. Connor

SECTION 2

The challenge of palliative medicine

2.1 Building definitional consensus in palliative care 35

Russell K. Portenoy

2.2 Core concepts in palliative care 44

Nathan I. Cherny and Russell K. Portenoy

2.3 The epidemiology of death and symptoms: planning for population-based palliative care 55

Davinia Seah, David Marco, Jennifer Philip, and Megan B. Sands

2.4 Barriers to the delivery of palliative care 69

Barry Laird, Erna Haraldsdottir, and Charlie Hall

2.5 Ethnic and cultural aspects of palliative and end of life care 76

Jonathan Koffman and Natalia Calanzani

2.6 Health economics for palliative care 93

Peter S. Hall, Katharina Diernberger, and Liz Grant

SECTION 3

Service delivery issues in palliative care

3.1 Specialist palliative care along the trajectory of illness: issues in the early integration of palliative care 103

Breffni Hannon, Stein Kaasa, and Camilla Zimmermann

3.2 Palliative care delivery models 111

Irene J. Higginson

3.3 Palliative medicine in the intensive care unit 121

Sharon Einav, Nathan I. Cherny, and J. Randall Curtis

3.4 Palliative care in the emergency department 133

Naomi George and Corita Grudzen

3.5 Palliative care in the nursing home 143

Jane Phillips and Annmarie Hosie

SECTION 4

Healthcare professionals in palliative care

4.1 The core team and the extended team 159

Dagny Faksvåg Haugen, Friedemann Nauck, and Deborah Witt Sherman

4.2 Burnout, compassion fatigue, and moral distress in palliative care 166

Nathan I. Cherny, Batsheva Ziff-Werman, and Michael Kearney

4.3 Nursing education in palliative care 181

Betty R. Ferrell, Polly Mazanec, Pam Malloy, and Rose Virani

4.4 Social work in palliative care 191

Terry Altilio, Bridget Sumser, and Nina Laing

4.5 The role of the chaplain in palliative care 198

George Handzo and Christina Puchalski

4.6 Occupational therapy in palliative care 206

Maria Denise Pessoa Silva, Fiona Rolls, Lynne White, Tamsin Longley, Jane Murphy, and Jill Cooper

4.7 The role of the creative arts in palliative care 213

Nigel Hartley

4.8 The role of the dietitian in palliative care 219

Samantha Cushen and Aoife Ryan

4.9 Physiotherapy in palliative care 225

Lucy Fettes and Matthew Maddocks

4.10 Speech and language therapy in palliative care 231

Tim Luckett and Katherine L. P. Reid

4.11 Clinical psychology in palliative care 241

E. Alessandra Strada

4.12 The contribution of the clinical pharmacist in palliative care 248

Ebtesam Ahmed

4.13 Medical rehabilitation and the palliative care patient 255

Andrew M Cole

SECTION 5

Communication and palliative medicine

5.1 Communication with the patient and family 267

Thomas W LeBlanc and James Tulsky

5.2 Practical considerations including difficult conversations 277

Susan D. Block

5.3 Advance care planning 286

Judith Rietjens, Ida Korfage, and Jane Seymour

SECTION 6

Family and caregiver issues

6.1 Family dynamics in the context of serious illness 295

Carrie Lethborg and David W Kissane

6.2 Caregiver burden and distress 303

Rinat Nissim, Sarah Hales, and Gary Rodin

SECTION 7

Pain

7.1 Definition and assessment of chronic pain in advanced disease 313

Lucy N. Wyld, Clare Rayment, and Mike I. Bennett

7.2 Pathophysiology of pain in cancer and other terminal illnesses 321

Anthony H. Dickenson and Richard Gordon-Williams

7.3 Acute cancer pain syndromes 333

Nathan I. Cherny

7.4 Chronic cancer pain syndromes 345

Nathan I. Cherny

7.5 Principles of drug therapy 364

Ruth Miles, Steven Wanklyn, and Joy Ross

7.6 Opioid therapy: optimizing analgesic outcomes 372

Nathan I. Cherny and Marie T. Fallon

7.7 Opioid therapy: managing risks of abuse, addiction, and diversion 416

Joseph V. Pergolizzi, Jr, Jo Ann LeQuang, Flaminia Coluzzi, Dean Mariano, Andrew Nicolaou, and Christopher Gharibo

7.8 Non-opioid analgesics 424

Per Sjøgren, Frank Elsner, and Stein Kaasa

7.9 Adjuvant analgesics: principles of use 433

Russell K. Portenoy, Ebtesam Ahmed, and Mona Patel

7.10 Interventional approaches for chronic pain 443

Robert A. Swarm, Menelaos Karanikolas, Lesley K. Rao, and Rajiv K. Shah

7.11 Neurostimulation in pain management 454

Helena Knotkova

7.12 Behavioural and psychosocial interventions for pain management 461

Joseph G. Winger, Carolyn E Keeler, and Francis J. Keefe

7.13 Integrative medicine therapies in pain management 471

Noah Samuels and Eran Ben-Arye

7.14 Management issues in bone pain 478

Peter Hoskin

7.15 Management issues in neuropathic pain 485

Lise Ventzel and Nanna Brix Finnerup

7.16 Management issues in visceral pain 491

Victor T. Chang

7.17 Management issues in chronic pain following cancer therapy 499

Judith A. Paice

7.18 Paediatric pain control 506

Renee McCulloch

SECTION 8

Gastrointestinal symptoms and disorders

8.1 Dysphagia, dyspepsia, and hiccups 525

Katherine Clark

8.2 Nausea and vomiting 534

Saskie Dorman

8.3 Constipation and diarrhoea 545

Philip J. Larkin

8.4 Jaundice, ascites, and encephalopathy 556

Alexandra Shingina and Anne M. Larson

8.5 Aetiology, classification, assessment, and treatment of the anorexia-cachexia syndrome 567

Vickie Baracos and Sharon M. Watanabe

8.6 Parenteral nutrition 579

Jann Arends and Florian Strasser

SECTION 9

Cardiorespiratory symptoms and disorders

9.1 Breathlessness and other respiratory symptoms in palliative care 589

Miriam J. Johnson and David C. Currow

9.2 Cough and other pulmonary symptoms 604

Doris Tse and Kin-Sang Chan

SECTION 10

Skin and oral symptoms and disorders

10.1 Skin problems in palliative care 613

Sebastian Probst and Georgina Gethin

10.2 Palliative wound and ostomy care 622

Charles P. Tilley, Mei R. Fu, Janet H. Van Cleave, Allison R. Most, and Christopher Comfort

10.3 Lymphoedema and oedema of advanced disease 648

Vaughan Keeley

10.4 Oral care 656

Andrew N. Davies

SECTION 11

Genitourinary symptoms and disorders

11.1 Dysuria, frequency, and bladder spasm 673

Jennifer G. Rothschild, Noah E. Canvasser, Frederick J. Meyers, and Christopher P. Evans

11.2 Obstructive urinary disorders 677

Noah E. Canvasser, Jennifer G. Rothschild, Frederick J. Meyers, and Christopher P. Evans

SECTION 12

Constitutional symptoms and related disorders

12.1 Fatigue 685

Sriram Yennurajalingam and Eduardo Bruera

12.2 Sexuality in palliative care: discussing patient sexuality and intimacy in palliative care 698

Lauren Kadwell, Jane Ussher, Emilee Gilbert, Janette Perz, and Amanda Hordern

12.3 Sleep disorders 708

Kyriaki Mystakidou, Efi Parpa, and Eleni Tsilika

12.4 Assessment and management of thrombotic complications 717

Simon Noble, Nicola Pease, and Nicolas Chinn-Yee

12.5 Assessment and management of bleeding complications in the medically ill 727

Bill Hulme, Sarah Wilcox, Paul Ashwood, Laura Deacon, Hazel Gilkes, and Victoria Montgomery

SECTION 13

Psychiatric and psychological symptoms and disorders

13.1 Coping and resilience in palliative medicine 739

Tzeela Cohen and Simon Wein

13.2 Depression, demoralization, and suicidality 747

David W Kissane

13.3 Fear, anxiety, and adjustment disorder in palliative care 756

Kerry A. Sherman and Christopher J. Kilby

13.4 Delirium 764

Meera Agar, Yesne Alici, Augusto Caraceni, and William Breitbart

13.5 Bereavement 773

David W. Kissane

SECTION 14

Palliative care in cancer

14.1 The oncologist’s role in delivering palliative care 787

Nathan I. Cherny and Stein Kaasa

14.2 Disease-modifying therapies in advanced cancer: medical treatment 800

Olav Dajani and Karin Jordan

14.3 Radiotherapy in symptom management 808

Peter Hoskin

14.4 The role of general surgery in the palliative care of patients with cancer 829

Robert Krouse and Brian Badgwell

14.5 Orthopaedic surgery in the palliation of cancer 839

Mohamed Yakoub and John Healey

14.6 Integrative oncology in palliative medicine 849

Eran Ben-Arye and Noah Samuels

14.7 Interventional radiology in the palliation of cancer 861

Tarun Sabharwal, Nicos I. Fotiadis, and Andy Adam

14.8 Neurological problems in advanced cancer 872

Augusto Caraceni, Fabio Simonetti, and Cinzia Martini

14.9 Endocrine and metabolic complications of advanced cancer 890

Richella Ryan and Ruth Casey

14.10 Malignant bowel obstruction 904

Jason W. Boland and Elaine G. Boland

14.11 Palliative care issues in head and neck cancers 918

Catriona R. Mayland and Simon N. Rogers

14.12 Palliative care issues in populations with haematological malignancies 927

Thomas W. LeBlanc and Areej El-Jawahri

14.13 Anaemia, cytopenias, and thrombosis in palliative medicine 937

Nancy Zhu and Cynthia Wu

SECTION 15

Issues in populations with non-cancer illnesses

15.1 HIV/AIDS 949

Meera Pahuja and Peter Selwyn

15.2 Advanced diseases of the lung 964

Natasha Smallwood and Nicole Goh

15.3 Advanced heart disease 976

Steven Pantilat, Patricia Davidson, and Mitchell Psotka

15.4 Dementia 987

Eric Widera, Shaida Talebreza, and Rachelle E Bernacki

15.5 Neurological disorders other than dementia 996

Raymond Voltz and Stefan Lorenzl

15.6 Palliative care and end-stage liver disease 1004

Arpan Patel and Anne Walling

15.7 End-stage kidney disease 1010

Fliss E. M. Murtagh

15.8 Palliative care in catastrophic disasters and humanitarian crises 1020

Anne Wilkinson and Marianne Matzo

SECTION 16

Issues of the very young and the very old

16.1 Involving children and families when someone important is dying or has died 1029

Erna Haraldsdottir and Sally Paul

16.2 Care of children with advanced illness 1035

Myra Bluebond-Langner, Richard W. Langner, and Ignasi Clemente

16.3 Palliative medicine and care of the elderly 1046

Meera Agar and Jane Phillips

SECTION 17

Spiritual issues in palliative medicine

17.1 Spiritual issues in palliative medicine 1063

Susan McClement, Genevieve Thompson, and Jamie Penner

17.2 Integration of spiritual care into palliative care service delivery models 1072

Yvan Beaussant, Alexandra Nichipor, and Tracy A Balboni

SECTION 18

The terminal phase

18.1 Predicting survival in patients with advanced disease 1083

Christian T. Sinclair

18.2 Physiology of dying 1094

David Hui and Masanori Mori

18.3 Management of the actively dying patient 1104

Judith Lacey and Nathan I. Cherny

SECTION 19

Ethical issues

19.1 Practical bioethics in the care of patients with advanced illness 1121

Robert C. Macauley

19.2 Requests for futile or inappropriate interventions near the end of life 1132

Alexander A. Kon

19.3 Autonomy and shared decision-making in a multicultural world 1139

Nathan I. Cherny

19.4 Truth telling and consent 1147

Linda Emanuel, Rebecca Johnson, and Lara Boyken

19.5 Ethics in paediatric palliative care 1155

Richard D. W. Hain

19.6 Ethical issues in physician aid-in-dying 1161

Lars Johan Materstvedt

19.7 Withholding and withdrawing life-sustaining treatment (including artificial nutrition and hydration) 1170

Danielle Ko, Hannah Evans-Barns, and Craig Blinderman

19.8 Medical and ethical considerations in palliative sedation at the end of life 1180

Eric L. Krakauer

SECTION 20

Assessment tools and informatics

20.1 Palliative care needs assessment tools 1191

Afaf Girgis, Amy Waller, and Breanne Hobden

20.2 Informatics and literature search 1209

Jennifer Tieman and David C. Currow

20.3 Validated assessment tools for psychological, spiritual, and family issues 1216

Madeline Li, Tracy A. Balboni, Rinat Nissim, and Gary Rodin

SECTION 21

Teaching and training in palliative medicine

21.1 Physicians 1233

Karen Forbes and Jane Gibbins

21.2 Nurses 1242

Geana Paula Kurita and Philip J. Larkin

21.3 Teaching and training in palliative social work, chaplaincy, and pharmacy 1252

Myra Glajchen, George Handzo, and Ebtesam Ahmed

SECTION 22

Research in palliative medicine

22.1 Research in palliative care 1261

Marianne J. Hjermstad and Stein Kaasa

22.2 The principles of evidence-based medicine 1268

Miriam J. Johnson and David C. Currow

22.3 Understanding clinical trials in palliative care research 1279

Pål Klepstad and Stein Kaasa

22.4 Qualitative research 1289

Kate Flemming

22.5 Research into psychosocial issues 1295

David W Kissane, Christopher H Grossman, and Clare O’Callaghan

22.6 Ethical issues in palliative care research 1312

Tyler Tate and David Casarett

22.7 Quality of life and patient-reported outcome measures 1318

Jon Håvard Loge and Stein Kaasa

22.8 Health services research in palliative and end of life care 1328

Tinne Smets and Luc Deliens

22.9 Clinical audit, quality improvement, and safety in palliative medicine 1335

Irene J. Higginson and Mevhibe B. Hocaoglu

Index 1351

Abbreviations

5FU fluorouracil

5-HT 5-hydroxytryptamine (serotonin)

AACN American Association of Colleges of Nursing

ACC adrenocortical carcinoma

ACD anaemia of chronic disease

ACEI angiotensin-converting enzyme inhibitor

ACP advance care planning

ACT acceptance and commitment therapy

ACTH adrenocorticotropic hormone

AD advance directive

ADEPT Advanced Dementia Prognostic Tool

ADF abuse-deterrent formulation

AIDS acquired immune deficiency syndrome

AMA American Medical Association

AML acute myeloid leukaemia

ANA American Nurses Association

ANC absolute neutrophil count

ANH artificial nutrition and hydration

APD atypical parkinsonian disorders

APRN advanced practice registered nurse

ARB angiotensin receptor blocker

ARNI angiotensin receptor–neprilysin inhibitor

ART antiretroviral therapy

ASA acetylsalicylic acid

ASCO American Society of Clinical Oncology

ASHP American Society of Health-System Pharmacists

ASIC acid-sensing ion channel

ATS American Thoracic Society

BIS bispectral index

BMI body mass index

BPI Brief Pain Inventory

CALM Managing Cancer and Living Meaningfully

CAM complementary and alternative medicine

CAT cancer-associated thrombosis

CBT cognitive behavioural therapy

CBT-I cognitive behavioural therapy for insomnia

CES cranial electrical stimulation

CESCR Committee on Economic, Social and Cultural Rights

CGRP calcitonin gene-related peptide

CHF chronic heart failure

CI confidence interval

CIC clean intermittent catheterization

CIM complementary and integrative medicine

CINV chemotherapy-induced nausea and vomiting

CIPN chemotherapy-induced peripheral neuropathy

CKD chronic kidney disease

CLL chronic lymphoid leukaemia

CML chronic myeloid leukaemia

CNS clinical nurse specialist or central nervous system

COMT catecholamine-O-methyl-transferase

COPD chronic obstructive pulmonary disease

COX cyclooxygenase

CPE clinical pastoral education

CPP cerebral perfusion pressure

CPR cardiopulmonary resuscitation

CPS clinician prediction of survival

CRC Convention on the Rights of the Child

CRF cancer-related fatigue

CRP C-reactive protein

CRT cardiac resynchronization therapy

CSF cerebrospinal fluid

CT computed tomography

CYP cytochrome P450 or children and young persons

DBS deep brain stimulation

DHA docosahexaenoic acid

DIC disseminated intravascular coagulation

DILI drug-induced liver injury

DLB dementia with Lewy bodies

DMC decision-making capacity

DNI do not intubate

DNP Doctor of Nursing Practice

DNR do not resuscitate

DOAC direct acting oral anticoagulant

DOR delta opioid receptor

DPS deep palliative sedation

DRE digital rectal examination

DSM-5 Diagnostic and Statistical Manual of Mental Disorders, fifth edition

DVT deep vein thrombosis

EAPC European Association for Palliative Care

EAS ectopic adrenocorticotropic hormone secretion

EBM evidence-based medicine

EBP evidence-based practice

ECOG Eastern Cooperative Oncology Group

ED emergency department

EGF epidermal growth factor

ELNEC End-of-Life Nursing Education Consortium

EM emergency medicine

EML essential medicines list

EORTC European Organisation for Research and Treatment of Cancer

QLQ-C30 Quality of Life Questionnaire Core 30

EPA eicosapentaenoic acid or entrustable professional activity

EPC early palliative care

EPR electronic patient record

ERCP endoscopic retrograde cholangiopancreatography

ESA erythropoietin-stimulating agent

ESAS Edmonton Symptom Assessment Scale

ESLD end-stage liver disease

ESMO European Society of Medical Oncology

FAST Functional Assessment Staging

FFGT family-focused grief therapy

FIM Functional Independence Measure

fMRI functional magnetic resonance imaging

GABA gamma-aminobutyric acid

G-CSF granulocyte colony-stimulating factor

GI gastrointestinal

GMC General Medical Council

GOLD Global Initiative for Chronic Obstructive Lung Disease

GP general practitioner

HAART highly active antiretroviral therapy

HCC hepatocellular carcinoma

HCP healthcare professional

HCV hepatitis C virus

HE hepatic encephalopathy

HF heart failure

HFpEF heart failure with preserved ejection fraction

HFrEF heart failure with reduced ejection fraction

HIT health information technology

HIV human immunodeficiency virus

HL Hodgkin lymphoma

HM haematological malignancies

HPA hypothalamic–pituitary–adrenal

HPNA Hospice and Palliative Nurses Association

HPV human papillomavirus

HRQL health-related quality of life

HRQoL health-related quality of life

IAHPC International Association for Hospice and Palliative Care

IASP International Association for the Study of Pain

ICD implantable cardioverter defibrillator

ICD-11 International Statistical Classification of Diseases and Related Health Problems, eleventh edition

ICER incremental cost-effectiveness ratio

ICP intracranial pressure

IDT interdisciplinary team

IL interleukin

ILD interstitial lung disease

IM intramuscular

INCB International Narcotics Control Board

INR international normalized ratio

IO integrative oncology

IOM Institute of Medicine

IP integrative physician

IPC integrated palliative care

IPF idiopathic pulmonary fibrosis

ISTH International Society of Thrombosis and Hemostasis

IV intravenous

IVC inferior vena cava

KOR kappa opioid receptor

KPS Karnofsky Performance Status

KTU Kennedy terminal ulcer

LMICs low- and middle-income countries

LMWH low-molecular-weight heparin

LP lumbar puncture

LST life-sustaining treatment

LVAD left ventricular assist device

M3G morphine-3-glucuronide

M6G morphine-6-glucuronide

MA megestrol acetate

MAC Mycobacterium avium complex

MAOI monoamine oxidase inhibitor

MARSI medical adhesive-related skin injury

MASD moisture-associated skin damage

MBSR mindfulness-based stress reduction

MCS motor cortex stimulation or minimally conscious state

MDT multidisciplinary team

MELD Model for End-Stage Liver Disease

MLD manual lymphatic drainage

MM multiple myeloma

MMSE Mini-Mental State Examination

MoCA Montreal Cognitive Assessment

MOR mu opioid receptor

MORECare Methods of Researching End of Life Care

MRCP magnetic resonance cholangiopancreatography

MRI magnetic resonance imaging

MS multiple sclerosis

MSA multiple system atrophy

mTOR mammalian target of rapamycin

MUST Malnutrition Universal Screening Tool

NAP national action plan

NASH non-alcoholic steatohepatitis

NCC National Consensus Conference

NCP National Consensus Project

NCPB neurolytic coeliac plexus block

NCSBN National Council of State Boards of Nursing

NG nasogastric

NGF nerve growth factor

NHL non-Hodgkin lymphoma

NHPCO National Hospice and Palliative Care Organization

NIPPV non-invasive positive pressure ventilation

NK neurokinin

NLSB neurolytic lumbar sympathetic block

NMDA N-methyl-D-aspartate

NNH number needed to harm

NNT number needed to treat

NP neuropathic pain

NPUAP National Pressure Ulcer Advisory Panel

NREM non-rapid eye movement

NRS numerical rating scale

NRTI nucleoside reverse transcriptase inhibitor

NSAID non-steroidal anti-inflammatory drug

NTS nucleus tractus solitarius

NYHA New York Heart Association

OAB overactive bladder

OIC opioid-induced constipation

ONS oral nutritional supplement

OUD opioid use disorder

PAD physician aid-in-dying

PAMORA peripherally acting mu-opioid receptor antagonist

PaP Palliative Prognostic

PAS physician-assisted suicide

PC palliative care

P-CaRES Palliative Care and Rapid Emergency Screening

PD Parkinson’s disease

PDE principle of double effect

PDMP prescription drug monitoring programme

PE pulmonary embolism

PET positron emission tomography

PG prostaglandin

PG-SGA Patient-Generated Subjective Global Assessment

PGY1 postgraduate year 1

PGY2 postgraduate year 2

PJP Pneumocystis jirovecii pneumonia

PN parenteral nutrition

PNS peripheral nerve stimulation

POS Palliative care Outcome Scale

PPI proton pump inhibitor

PPS Palliative Performance Scale

PRES posterior reversible encephalopathy syndrome

PRN pro re nata (as needed)

PRO patient-reported outcome

PROM patient-reported outcome measure

PSP progressive supranuclear palsy

PTH parathyroid hormone

PTHrP parathyroid hormone-related protein

PTSD post-traumatic stress disorder

PVS persistent vegetative state

QALY quality-adjusted life year

QES qualitative evidence synthesis

QoL quality of life

RANK receptor activator of nuclear factor kappa B

RANKL receptor activator of nuclear factor kappa B ligand

RCT randomized controlled trial

REM rapid eye movement

RF radiofrequency

RFA radiofrequency ablation

RLS restless legs syndrome

ROSC return of spontaneous circulation

rTMS repetitive transcranial magnetic stimulation

SC subcutaneous

SCCM Society of Critical Care Medicine

SCS spinal cord stimulation

SD standard deviation

SE status epilepticus

SEMS self-expandable metal stent

SF-36 36-Item Short Form Survey

SGD salivary gland dysfunction

SHS serious health-related suffering

SIAD syndrome of inappropriate antidiuresis

SIO Society for Integrative Oncology

SLT speech and language therapy/therapist

SNRI serotonin–norepinephrine reuptake inhibitor

SPCU specialist palliative care unit

SPEED Screen for Palliative and End of Life Care Needs in the Emergency Department

SPT suprapubic tube

SSRI selective serotonin reuptake inhibitor

SUPPORT Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments

SVCO superior vena cava obstruction

SWS slow-wave sleep

t½ half-life

TACE transarterial chemoembolization

TB-TTI Trombley–Brennan terminal tissue injury

TCA tricyclic antidepressant

TCM traditional Chinese medicine

tDCS transcranial direct current stimulation

TENS transcutaneous electrical nerve stimulation

THC delta-9-tetrahydrocannabinol

TIPS transjugular intrahepatic portosystemic shunt

TRPV transient receptor potential voltage-gated

tVNS transcutaneous vagus nerve stimulation

TXA tranexamic acid

UHC universal health coverage

UN United Nations

UNCRC United Nations Convention on the Rights of the Child

UTI urinary tract infection

VAS visual analogue scale

Vd volume of distribution

VEGF vascular endothelial growth factor

VGCC voltage-gated calcium channel

VTE venous thromboembolism

WBP wound bed preparation

WDR wide dynamic range

WHA World Health Assembly

WHO World Health Organization

WMA World Medical Association

WOCN Wound, Ostomy, and Continence Nurses Society

Contributors

Andy Adam Guy’s and St Thomas’ NHS Foundation Trust, London, UK

Meera Agar Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney; and Department of Palliative Care, South West Sydney Local Health District, Sydney, NSW, Australia

Ebtesam Ahmed St John’s University College of Pharmacy and Health Sciences, Director of Pharmacy Internship, MJHS Institute for Innovation in Palliative Care, New York, NY, USA

Yesne Alici Memorial Sloan Kettering Cancer Center, New York, NY, USA

Terry Altilio Mount Sinai Health System, Division of Palliative Care, Mount Sinai Beth Israel; and Palliative Social Work Consultant, Mt. Kisco, NY, USA

Jann Arends Department of Internal Medicine, Hematology, Oncology, and Stem Cell Transplantation, University of Freiburg, Freiburg, Germany

Paul Ashwood Department of Palliative Medicine, Leeds Teaching Hospital NHS Foundation Trust, Leeds, UK

Brian Badgwell Department of Surgical Oncology, M.D. Anderson Cancer Center, Houston, TX, USA

Tracy A. Balboni Supportive and Palliative Radiation Oncology Service, Dana-Farber/ Brigham and Women’s Cancer Center, Boston, MA, USA

Vickie Baracos Department of Oncology, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB, Canada

Yvan Beaussant Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, MA, USA

Eran Ben-Arye Integrative Oncology Program, Lin, Carmel, and Zebulun Medical Centers, Clalit Health Services; and Rappaport Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel

Mike I. Bennett Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK

Rachelle E. Bernacki Department of Psychosocial Oncology and Palliative Care, Dana- Farber Cancer Institute, Boston, MA, USA

Craig Blinderman Palliative Care Service, Department of Medicine, Columbia University Irving Medical Center/New York-Presbyterian Hospital, New York, NY, USA

Susan D. Block Founding Chair Emerita, Department of Psychosocial Oncology and Palliative Care, Dana- Farber Cancer Institute and Brigham and Women’s Hospital; and Professor of Psychiatry and Medicine, Harvard Medical School, Boston, MA, USA

Myra Bluebond-Langner Louis Dundas Centre for Children’s Palliative Care, UCL Great Ormond Street Institute of Child Health, London, UK; and Rutgers University, Camden, NJ, USA

Elaine G. Boland Department of Palliative Medicine, Hull University Teaching Hospitals NHS Trust, Hull, UK

Jason W. Boland Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK

Lara Boyken Department of Preventive Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

William Breitbart Department of Psychiatry and Behavioural Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA

Frank Brennan Department of Palliative Care, St George and Calvary Hospitals, Sydney, NSW, Australia

Eduardo Bruera Department of Palliative Care, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

Natalia Calanzani The Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK

Noah E. Canvasser Department of Urologic Surgery, University of California, Davis, Sacramento, CA, USA

Augusto Caraceni Department of Palliative Care, Pain Therapy and Rehailitation, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy

David Casarett Duke University School of Medicine, Durham, NC, USA

Ruth Casey Department of Medical Genetics, University of Cambridge, Cambridge, UK

Carlos Centeno ATLANTES Global Palliative Care Observatory, Institute for Culture and Society, University of Navarra, Pamplona, Spain

Kin-Sang Chan Haven of Hope Hospital, Kowloon, Hong Kong

Victor T. Chang Section Hematology Oncology, VA New Jersey Health Care System, East Orange; and Rutgers New Jersey Medical School, Newark, NJ, USA

Nathan I. Cherny Cancer Pain and Palliative Medicine Service, Department of Oncology, Shaare Zedek Medical Center, Jerusalem, Israel

Nicolas Chin-Yee Saint Michael’s Hospital, University of Toronto, ON, Canada

Katherine Clark Northern Sydney Local Health District Supportive and Palliative Care Network, Sydney; and Northern Clinical School, The University of Sydney, Sydney, NSW, Australia

Ignasi Clemente Department of Anthropology, Hunter College, The City University of New York, New York, NY, USA; and Louis Dundas Centre for Children’s Palliative Care, UCL Great Ormond Street Institute of Child Health, London, UK

Tzeela Cohen Department of Palliative Medicine, Davidoff Cancer Center, Beilinson Hospital, Petach Tikva, Israel

Andrew M. Cole Cancer Rehabilitation Services, HammondCare, Greenwich Hospital, Greenwich; and Hammond University Clinics, University of New South Wales, Sydney, NSW, Australia

Flaminia Coluzzi Department of Medical and Surgical Sciences and Biotechnologies, Sapienza University of Rome; and Unit of Anaesthesia, Intensive Care, and Pain Medicine, Sant’Andrea University Hospital, Rome, Italy

Christopher Comfort Calvary Hospital and Hospice, Bronx, NY, USA

Stephen R. Connor The Worldwide Hospice Palliative Care Alliance, London, UK

Jill Cooper Occupational Therapy Department, The Royal Marsden NHS Foundation Trust, London, UK

David C. Currow Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia

J. Randall Curtis Division of Pulmonary Critical Care and Sleep Medicine, Harborview Medical Center, Seattle, WA, USA

Samantha Cushen School of Food and Nutritional Sciences, University College Cork, National University of Ireland, Cork, Ireland

Olav Dajani Department of Oncology, Oslo University Hospital, Oslo, Norway

Patricia Davidson School of Nursing, John Hopkins University, Baltimore, MA, USA

Andrew N. Davies Professor of Palliative Medicine, Trinity College Dublin; University College Dublin; and Our Lady’s Hospice, Dublin, Ireland

Liliana De Lima International Association for Hospice and Palliative Care, Houston, TX, USA

Laura Deacon Palliative Medicine, St Gemma’s Hospice, Leeds, UK

Luc Deliens End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB); and Ghent University, Brussels, Belgium

Anthony H. Dickenson Division of Biosciences, University College London, London, UK

Katharina Diernberger Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK

Saskie Dorman Consultant in Palliative Medicine, Forest Holme Hospice, University Hospitals Dorset NHS Foundation Trust, Dorset, UK

Sharon Einav Intensive Care Unit, Shaare Zedek Medical Center, Jerusalem, Israel

Areej El-Jawahri Massachusetts General Hospital Cancer Center, Boston, MA, USA

Frank Elsner Department of Palliative Medicine, Medical Faculty, RWTH Aachen University, Cologne, Germany

Linda Emanuel Department of Internal Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

Christopher P. Evans Department of Urologic Surgery, University of California, Davis, Sacramento CA, USA

Hannah Evans-Barns Department of Paediatric Surgery, The Royal Children’s Hospital; and Surgical Research Group, Murdoch Children’s Research Institute, Melbourne, VIC, Australia

Marie T. Fallon St Columba’s Hospice Chair of Palliative Medicine, University of Edinburgh, Edinburgh, UK

Betty R. Ferrell Division of Nursing Research and Education, City of Hope Comprehensive Cancer Center, Duarte, CA, USA

Lucy Fettes Cicely Saunders Institute of Palliative Care, Policy, and Rehabilitation, King’s College London, London, UK

Nanna Brix Finnerup Department of Clinical Medicine, Aarhus University, Aarhus, Denmark

Kate Flemming Professor of Hospice Practice and Evidence Synthesis, Department of Health Sciences, University of York; and Head of Research and Clinical Innovation, Hospice UK, London, UK

Karen Forbes Bristol Medical School, Faculty of Health Sciences, University of Bristol, Bristol, UK

Nicos I. Fotiadis Department of Interventional Radiology, The Royal Marsden NHS Foundation Trust, London, UK

Mei R. Fu William F. Connell School of Nursing, Boston College, Boston, MA, USA

Eduardo Garralda ATLANTES Global Palliative Care Observatory, Institute for Culture and Society, University of Navarra, Pamplona, Spain

Naomi George Department of Emergency Medicine, Brigham and Women’s Hospital, Boston, MA, USA

Georgina Gethin School of Nursing and Midwifery, National University of Ireland; and Alliance for Research and Innovation in Wounds, National University of Ireland, Galway, Ireland

Christopher Gharibo Professor of Anesthesiology and Orthopedics, Medical Director of Pain Medicine, NYU Langone Health, New York, NY, USA

Jane Gibbins Department of Palliative Medicine, Royal Cornwall Hospitals NHS Trust, Truro, Cornwall, UK

Emilee Gilbert School of Psychology, Western Sydney University, NSW, Australia

Hazel Gilkes Palliative Medicine, Sue Ryder Manorlands Hospice, Oxenhope, UK

Afaf Girgis Psycho-oncology Research Group, Centre for Oncology Education and Research Translation (CONCERT), Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, University of New South Wales, Sydney; and Conjoint Professor, University of Western Sydney, University of Queensland, and Griffith University, Australia

Myra Glajchen Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx; and Director of Medical Education, MJHS Institute for Innovation in Palliative Care, New York, NY, USA

Nicole Goh Department of Respiratory and Sleep Medicine, Austin Hospital, Melbourne; Institute for Breathing and Sleep, Melbourne; and Faculty of Medicine, Dentistry and Health, The University of Melbourne, Melbourne, VIC, Australia

Richard Gordon-Williams Division of Surgery and Interventional Science, University College London Medical School, London, UK

Liz Grant Global Health Academy, University of Edinburgh, Edinburgh, UK

Christopher H. Grossman Calvary Health Care Bethlehem, VIC, Australia

Corita Grudzen Department of Emergency Medicine, NYU Langone Health, New York, NY, USA

Liz Gwyther Division of Family Medicine and Interdisciplinary Palliative Care and Medicine, University of Cape Town, South Africa

Richard D. W. Hain All-Wales Paediatric Palliative Care Network, Noah’s Ark Children’s Hospital for Wales, Cardiff, UK

Sarah Hales Princess Margaret Hospital Cancer Centre, Toronto, ON, Canada

Charlie Hall Institute of Genetics and Molecular Medicine, University of Edinburgh; and St Columba’s Hospice, Edinburgh, UK

Peter S. Hall Edinburgh Cancer Research Centre, University of Edinburgh, Edinburgh, UK

George Handzo HealthCare Chaplaincy Network—Research, New York, NY, USA

Breffni Hannon Department of Supportive Care, Princess Margaret Cancer Centre, Toronto, ON, Canada

Erna Haraldsdottir Education and Research, St Columba’s Hospice, Edinburgh; and Department of Nursing, Queen Margaret University, Musselburgh, UK

Nigel Hartley Mountbatten Hospice Group, London, UK

Dagny Faksvåg Haugen Department of Clinical Medicine K1, University of Bergen, Bergen, Norway

John Healey Orthopaedic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York; and Department of Surgery, Weill Cornell Medical College, New York, NY, USA

Irene J. Higginson Cicely Saunders Institute of Palliative Care and Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, London, UK

Marianne Jensen Hjermstad Regional Advisory Unit for Palliative Care, Department of Oncology, Oslo University Hospital, Oslo, Norway

Breanne Hobden University of Newcastle, Callaghan, NSW, Australia

Mevhibe B. Hocaoglu Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King’s College London, London, UK.

Amanda Hordern Bayside Healthy Living, Melbourne, VIC, Australia

Annmarie Hosie Palliative Care Nursing, School of Nursing Sydney, The University of Notre Dame; and St Vincent’s Health Network Sydney, NSW, Australia

Peter Hoskin Mount Vernon Cancer Centre, Middlesex; and University of Manchester Cancer Research Centre, Manchester, UK

David Hui Department of Palliative Care, MD Anderson Cancer Center, Houston, TX, USA

Bill Hulme St Leonards Hospice, York; and Department of Palliative Medicine, York Teaching Hospital NHS Foundation Trust, York, UK

Miriam J. Johnson Wolfson Palliative Care Research Centre, University of Hull, Hull, UK

Rebecca Johnson Independent Researcher, Formerly Center for Community Health and Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

Karin Jordan Department of Haematology, Oncology and Rheumatology, University of Heidelberg, Heidelberg, Germany

Stein Kaasa European Palliative Care Research Center (PRC), Department of Oncology, Oslo University Hospital; and University of Oslo, Institute of Clinical Medicine, Oslo, Norway

Lauren Kadwell Translational Health Research Institute, School of Medicine, Western Sydney University, NSW, Australia

Menelaos Karanikolas Division of Pain Management, Department of Anesthesiology, Washington University School of Medicine, Saint Louis, MO, USA

Michael Kearney Palliative Care Consultants of Santa Barbara, Santa Barbara, CA, USA

Francis Keefe Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, NC, USA

Carolyn E. Keeler Department of Neurosurgery, Duke University Medical Center, Durham, NC, USA

Vaughan Keeley Lymphoedema Clinic, University Hospitals of Derby and Burton NHS Trust, Derby; and University of Nottingham Medical School, Nottingham, UK

Christopher J. Kilby Centre for Emotional Health, Department of Psychology, Macquarie University, Sydney; and School of Counselling, Psychology, and Psychotherapy, The Cairnmillar Institute, Hawthorn East, VIC, Australia

David W. Kissane Melbourne Clinical School, Notre Dame University, Werribee; and Department of Psychiatry, Monash Medical Centre, Monash University, Clayton, VIC, Australia

Pål Klepstad Department of Intensive Care Medicine, St Olavs University Hospital, Trondheim; and Department of Circulation and Medical Imaging, Norwegian University of Science and Technology, Trondheim, Norway

Helena Knotkova MJHS Institute for Innovation in Palliative Care, New York; and Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, New York, USA

Danielle Ko Palliative Care Service, Clinical Ethics Unit, Austin Health, Heidelberg, VIC, Australia

Jonathan Koffman Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, London, UK

Alexander A. Kon School of Medicine, Department of Pediatrics, University of California San Diego, La Jolla, California; and School of Medicine, Departments of Pediatrics and Bioethics, University of Washington, Seattle, WA, USA

Ida Korfage Department of Public Health, Erasmus MC, Rotterdam, The Netherlands

Eric L. Krakauer Division of Palliative Care and Geriatrics, Massachusetts General, Department of Global Health and Social Medicine, Harvard Medical School, Boston, MA, USA; and Department of Palliative Care, Ho Chi Minh City University of Medicine and Pharmacy, Ho Chi Minh City, Vietnam

Robert Krouse Surgical Services, Corporal Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia; and Department of Surgery, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA

Geana Paula Kurita Department of Oncology and Multidisciplinary Pain Centre, Rigshospitalet Copenhagen University Hospital, Copenhagen, Denmark

Judith Lacey Supportive Care Department, Chris O’Brien Lifehouse Comprehensive Cancer Centre, Camperdown, Sydney; and Sydney Medical School, University of Sydney, NSW, Australia

Nina Laing Department of Palliative Care, Medstar Washington Hospital Center, Washington, DC, USA

Barry Laird Institute of Genetics and Molecular Medicine, University of Edinburgh, Edinburgh; and St Columba’s Hospice, Edinburgh, UK

Richard W. Langner Louis Dundas Centre for Children’s Palliative Care, UCL Great Ormond Street Institute of Child Health, London, UK

Philip J. Larkin Palliative and Supportive Care Service, University of Lausanne, Lausanne, Switzerland

Anne M. Larson Departments of Gastroenterology and Hepatology, University of Washington, Seattle, WA, USA

Thomas W. LeBlanc Department of Medicine, Duke University School of Medicine; and Duke Cancer Institute, Durham, NC, USA

Jo Ann LeQuang Scientific Communications, NEMA Research Inc., Naples, FL, USA

Carrie Lethborg Department of Social Work, St Vincent’s Hospital, Melbourne, VIC, Australia

Madeline Li Department of Supportive Care, Princess Margaret Hospital Cancer Centre, Toronto, ON, Canada

Jon Håvard Loge Department of Behavioural Medicine, University of Oslo, Oslo, Norway

Tamsin Longley Occupational Therapy Department, The Royal Marsden NHS Foundation Trust, London, UK

Stefan Lorenzl Department of Palliative Care, Paracelsus Medical University, Salzburg, Austria

Tim Luckett Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia

Robert C. Macauley Department of Pediatrics, Oregon Health and Science University, Portland, OR, USA

Matthew Maddocks Cicely Saunders Institute of Palliative Care, Policy, and Rehabilitation, King’s College London, London, UK

Pam Malloy American Association of Colleges of Nursing, Washington, DC, USA

David Marco Centre for Palliative Care, St Vincent’s Hospital Melbourne, Fitzroy, VIC, Australia

Dean Mariano Clinical Medical Faculty, Frank H. Netter, MD School of Medicine, Quinnipiac University, North Haven, CT, USA

Cinzia Martini Department of Palliative Care, Pain Therapy and Rehailitation, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy

Lars Johan Materstvedt Department of Philosophy and Religious Studies, Norwegian University of Science and Technology (NTNU), Trondheim, Norway

Marianne Matzo Research, Hospice and Palliative Nurses Association, Pittsburgh, PA, USA

Catriona R. Mayland Department of Oncology and Metabolism, The University of Sheffield; Sheffield; and Palliative Care Institute, University of Liverpool, Cancer Research Centre, Liverpool, UK

Polly Mazanec Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH, USA

Susan McClement College of Nursing, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada

Renee McCulloch The Louis Dundas Centre for Palliative Care, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK

Frederick J. Meyers Division of Hematology Oncology, Department of Internal Medicine, and Comprehensive Cancer Center, University of California, Davis, Sacramento, CA, USA

Ruth Miles Consultant in Palliative Medicine, Greenwich and Bexley Community Hospice, London, UK

Victoria Montgomery Department of Palliative Medicine, Leeds Teaching Hospital NHS Foundation Trust, Leeds, UK

Masanori Mori Palliative and Supportive Care Division, Seirei Mikatahara General Hospital, Hamamatsu City, Japan

Allison R. Most Department of Otolaryngology— Head and Neck Surgery, Laura and Isaac Perlmutter Cancer Center at NYU Langone Health, New York, NY, USA

Jane Murphy Occupational Therapy Department, The Royal Marsden NHS Foundation Trust, London, UK

Fliss E. M. Murtagh Wolfson Palliative Care Research Centre, University of Hull, Hull, UK

Kyriaki Mystakidou Pain Relief and Palliative Care Unit, Department of Radiology, National and Kapodistrian University of Athens School of Medicine, Athens, Greece

Friedemann Nauck Department of Palliative Medicine, University Medical Center Göttingen, Göttingen, Germany

Alexandra Nichipor Department of Psychosocial Oncology and Palliative Care, Simmons University (MSW Candidate), Dana Farber Cancer Institute, Boston, MA, USA

Andrew Nicolaou Department of Pain Medicine and Anaesthesia, St Georges Hospital, London, UK

Rinat Nissim Princess Margaret Hospital Cancer Centre, Toronto, ON, Canada

Simon Noble Marie Curie Palliative Research Centre, Cardiff University, Cardiff, UK

Clare O’Callaghan Palliative Care Research, Cabrini Institute, Melbourne, VIC, Australia

Meera Pahuja Virginia Commonwealth University, Richmond, VA, USA

Judith A. Paice Division of Hematology-Oncology, Northwestern University, Chicago, IL, USA

Steven Pantilat Division of Palliative Medicine, Department of Medicine, University of California San Francisco, San Francisco, CA, USA

Efi Parpa Pain Relief and Palliative Care Unit, Department of Radiology, National and Kapodistrian University of Athens School of Medicine, Athens, Greece

Arpan Patel Division of Digestive Diseases, University of California, Los Angeles, CA, USA

Mona Patel MJHS Institute for Innovation in Palliative Care, New York, NY, USA

Sally Paul School of Social Work and Social Policy, University of Strathclyde, Glasgow, UK

Sheila Payne Faculty of Health and Medicine, Lancaster University, Lancaster, UK

Nicola Pease Velindre Cancer Centre, Cardiff, UK

Jamie Penner College of Nursing, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada

Joseph V. Pergolizzi, Jr Clinical Research, NEMA Research Inc., Naples, FL, USA

Janette Perz Translational Health Research Institute, School of Medicine, Western Sydney University, NSW, Australia

Maria Denise Pessoa Silva Occupational Therapy Department, The Royal Marsden NHS Foundation Trust, London, UK

Jennifer Philip Department of Medicine, St Vincent’s Hospital, The University of Melbourne, Fitzroy, VIC, Australia

Jane Phillips Head School of Nursing, Queensland University of Technology, Queensland; and Emeritus Professor Palliative Nursing, Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, NSW, Australia

Russell K. Portenoy MJHS Institute for Innovation in Palliative Care, New York; and Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, NY, USA

Sebastian Probst HES-SO University of Applied Sciences and Arts Western Switzerland, Geneva; and University Hospital Geneva, Geneva, Switzerland

Mitchell Psotka Inova Heart and Vascular Institute, Falls Church, VA, USA

Christina Puchalski Medicine and Health Sciences, The George Washington University School of Medicine and Health Sciences, Washington, DC, USA

Lukas Radbruch Department of Palliative Medicine, University of Bonn, Bonn, Germany

Lesley K. Rao Division of Pain Management, Department of Anesthesiology, Washington University School of Medicine, Saint Louis, MO, USA

Clare Rayment Bradford Teaching Hospitals NHS Trust, Bradford, UK

Katherine L. P. Reid NSW Ministry of Health, Centre for Population Health, Liverpool, NSW, Australia

Judith Rietjens Department of Public Health, Erasmus MC, Rotterdam, The Netherlands

Gary Rodin Princess Margaret Hospital Cancer Centre, Toronto, ON, Canada

Simon N. Rogers Regional Maxillofacial Unit, Aintree University Hospitals NHS Foundation Trust, Liverpool; and Faculty of Health and Social Care, Edge Hill University, Lancashire, UK

Fiona Rolls Occupational Therapy Department, The Royal Marsden NHS Foundation Trust, London, UK

Joy Ross St Christopher’s Hospice, London, UK

Jennifer G. Rothschild Department of Urologic Surgery, University of California, Davis, Sacramento CA, USA

Aoife Ryan School of Food and Nutritional Sciences, University College Cork, National University of Ireland, Cork, Ireland

Richella Ryan Arthur Rank Hospice Charity, Cambridge, UK

Tarun Sabharwal Guy’s and St Thomas’ NHS Foundation Trust, London, UK

Noah Samuels Center for Integrative Complementary Medicine, Shaare Zedek Medical Center, Jerusalem, Israel

Megan B. Sands Faculty of Medicine, Prince of Wales Clinical School, University of New South Wales, Sydney, NSW, Australia

Davinia Seah Sacred Heart Health Service, St Vincent’s Hospital Clinical School, Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia

Peter Selwyn Albert Einstein College of Medicine, Yeshiva University, Bronx, NY, USA

Jane Seymour Health Sciences School, The University of Sheffield, Sheffield, UK

Rajiv K. Shah Division of Pain Management, Department of Anesthesiology, Washington University School of Medicine, Saint Louis, MO, USA

Kerry A. Sherman Centre for Emotional Health, Department of Psychology, Macquarie University, Sydney, NSW, Australia

Alexandra Shingina Departments of Gastroenterology, Hepatology and Nutrition, Vanderbilt University, Nashville, TN, USA

Fabio Simonetti Department of Palliative Care, Pain Therapy and Rehailitation, Fondazione IRCCS

Istituto Nazionale dei Tumori, Milan, Italy

Christian T. Sinclair Division of Palliative Medicine, University of Kansas Medical Center, Kansas City, KS, USA

Per Sjøgren Section of Palliative Medicine, Department of Oncology, Rigshospitalet, Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark

Natasha Smallwood Respiratory and Sleep Medicine Department, Royal Melbourne Hospital, Melbourne; and Faculty of Medicine, Dentistry and Health, The University of Melbourne, Melbourne, VIC, Australia

Tinne Smets End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium

E. Alessandra Strada Adjunct Faculty, Psychopharmacology Program, Alliant International University, San Francisco, CA, USA

Florian Strasser Cancer Fatigue and Survivorship Clinic, St. Gallen Cantonal Hospital, St. Gallen, Switzerland

Bridget Sumser Division of Palliative Medicine, University of California San Francisco Medical Center, San Francisco, CA, USA

Robert A. Swarm Division of Pain Management, Department of Anesthesiology, Washington University School of Medicine, Saint Louis, MO, USA

Shaida Talebreza Division of Geriatrics, University of Utah, Salt Lake City, UT, USA

Tyler Tate Department of Pediatrics, Oregon Health and Science University, Portland, OR, USA

Genevieve Thompson College of Nursing, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada

Jennifer Tieman Research Centre for Palliative Care, Death and Dying, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia

Charles P. Tilley Rory Meyers College of Nursing, New York University, New York City, NY, USA

Doris Tse Palliative Care Unit, Department of Medicine and Geriatrics, Caritas Medical Centre, Hong Kong

Eleni Tsilika Department of Radiology, Pain Relief and Palliative Care Unit, National and Kapodistrian University of Athens School of Medicine, Athens, Greece

James Tulsky Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA

Jane Ussher Translational Health Research Institute, School of Medicine, Western Sydney University, NSW, Australia

Janet H. Van Cleave New York University Rory Meyers College of Nursing, New York City, NY, USA

Lise Ventzel Department of Clinical Medicine, Aarhus University, Aarhus, Denmark

Rose Virani City of Hope Comprehensive Cancer Center, Duarte, CA, USA

Raymond Voltz Department of Palliative Medicine, University Hospital Cologne, Cologne, Germany

Amy Waller University of Newcastle, Callaghan, NSW, Australia

Anne Walling Division of General Internal Medicine and Health Services Research, University of California, Los Angeles, CA, USA

Steven Wanklyn Guy’s and St Thomas’ NHS Foundation Trust, London, UK

Sharon M. Watanabe Division of Palliative Care Medicine, Department of Oncology, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB, Canada

Simon Wein Department of Palliative Medicine, Davidoff Cancer Center, Beilinson Hospital, Petach Tikva, Israel

Batsheva Ziff-Werman Internal Medicine and Palliative Care, Shaare Zedek Medical Center, Jerusalem, Israel

Lynne White Occupational Therapy Department, The Royal Marsden NHS Foundation Trust, London, UK

Eric Widera Division of Geriatrics, University of California, San Francisco, CA, USA

Sarah Wilcox Pain Relief and Palliative Care Unit, St Leonards Hospice, York, UK

Anne Wilkinson School of Nursing and Midwifery, Edith Cowan University, Joondalup, WA, Australia

Joseph Winger Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, NC, USA

Deborah Witt Sherman Nicole Wertheim College of Nursing and Health Sciences, Florida International University, Miami, FL, USA

Cynthia Wu Department of Medicine, Division of Hematology, University of Alberta, Edmonton, AB, Canada

Lucy N. Wyld Consultant in Palliative Care, Department of Palliative Care, Leeds Teaching Hospitals Trust, Leeds, GB

Mohamed Yakoub Orthopaedic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY, USA

Sriram Yennurajalingam Department of Palliative Care, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

Nancy Zhu Department of Medicine, Division of Hematology, University of Alberta, Edmonton, AB, Canada

Camilla Zimmermann Department of Supportive Care, Princess Margaret Cancer Centre, Toronto, ON, Canada

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SECTION 1

The worldwide status of palliative care

1.1 International progress in the development of palliative medicine 3

Carlos Centeno, Sheila Payne, and Eduardo Garralda

1.2 Essential medicines for palliative care 13

Lukas Radbruch and Liliana De Lima

1.3 Human rights issues 19

Frank Brennan and Liz Gwyther

1.4 Policy in palliative care 26

Stephen R. Connor

1.1 International progress in the development of palliative medicine

Introduction

This chapter highlights the importance of the development of palliative medicine to contemporary global healthcare systems. We trace the development of international initiatives and services, focusing on achievements and limitations in current mapping and comparative methodologies. We offer evidence on the progress of educational initiatives, both within medicine and for other members of the multidisciplinary team, at undergraduate and postgraduate level. It is beyond the scope of this chapter to review the training needs of volunteers or family carers.

The development of palliative care, concepts, and definitions

Definitions of palliative care have changed from a focus on end-stage cancer to include the trajectory of all life-limiting conditions (Box 1.1.1). They remain both contested and poorly understood by healthcare professionals and, more importantly, by patients and the public (McIlfatrick et al., 2013). The World Health Organization’s (WHO’s) first definition was published in 1990 and updated in 2002 (Box 1.1.2). The International Association for Hospice and Palliative Care (IAHPC) extended the WHO definition to be more globally appropriate, broader, and included recommendations for governments (IAHPC, 2019).

The Lancet Commission included palliative care and pain relief as essential elements of universal health coverage which had been largely ignored (Horton, 2017). For the Commission, the lack of global access to pain relief and palliative care throughout the life cycle constitutes a global crisis, and action to reduce the divide between rich and poor is a moral, health, and ethical imperative. The Commission developed a new conceptual framework for measuring the global burden of serious health-related suffering. Palliative care should be focused on relieving the serious health-related suffering that is associated with end-stage conditions (Knaul et al., 2018).

Concept of the WHO public health approach to developing palliative care

‘Development of palliative care’ refers to the processes, structures, policies, and resources that support the delivery of palliative care (Centeno et al., 2013). There is often an assumption of a linear upward trajectory in the provision of palliative care, the professional capacity and expertise, and concomitant resources; however, this is unlikely.

The WHO advocated a four-component model for international public health approaches to palliative care, comprising (1) availability of essential medicines, especially opioids; (2) education and training in core palliative care principles and skills for health professionals; (3) national health policies and strategic plans that incorporate palliative care and earmark resources; and (4) implementation of a range of services (Stjernswärd et al., 2007). A public health approach should include participation of civil society in palliative care advocacy and public debate. The World Health Assembly (2014) Resolution 67.19 urged national governments to embed palliative care within healthcare systems across the lifespan; however, globally, access to sufficient palliative care remains inadequate (Knaul et al., 2018).

The need for palliative care

The Lancet Commission identified 20 health conditions in its analysis of palliative care needs, which account for 84% of adult deaths and 60% of deaths in children. It argues that globally there is inadequate access to palliative care and major inequity across countries in distribution of sufficient opioids for pain relief (Knaul et al., 2018). Global projections indicate that between 40 and 80 million patients with advanced disease need access to palliative care, with 78–95% of them living in low- and middle-income countries (Connor and Bermedo, 2014; Knaul et al., 2018). An analysis of 12 countries indicates that highest need is associated with females and older age, and highest prevalence of need is located at home and in nursing homes (Morin et al., 2017).

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