Handbook of Palliative Care E-Book

Christina Faull

• Herausgeber: John Wiley & Sons
• Kategorie: Fachliteratur
• Sprache: Englisch

Seitenzahl: 1133

Veröffentlichungsjahr: 2012

Beschreibung

This handbook offers a practical, thorough approach to the clinical practice of palliative care. Adding North American authors to its roster of UK contributors, the third edition of this award-winning book addresses important changes in the evidence base of palliative care, as well as an emphasis on end-of-life community-based care. It features new chapters on dementia and advance care planning, a simplified lymphoedema discussion, and an ongoing commitment to providing essential guidance for physicians, nurses, and all primary care providers involved in palliative care in hospital, hospice, and community settings.

Leseprobe

Contents

Cover

Dedication

Title Page

Copyright

List of Contributors

Foreword

Preface to the Third Edition

Acknowledgements

Acknowledgement: Cover illustration

List of Abbreviations

Chapter 1: The Context and Principles of Palliative Care

Introduction

What are hospice, palliative care, and end-of-life care?

Issues in palliative care worldwide

Enabling people to be at home

The principles of palliative care

Attaining quality in palliative care

References

Chapter 2: Palliative Care in the Community

Introduction

Palliative care and the general practitioner

Training in palliative care for GPs

District nurses

Community matrons and case mangers

Specialist palliative care services in the community

Palliative care and the primary care team

Gold standards framework for palliative care

Gold standards framework and the multidisciplinary team

Palliative and end-of-life care in care homes or residential facilities

Out-of-hours palliative care in the community in the United Kingdom

The future: planning and commissioning future palliative care

Conclusion

References

Chapter 3: Public and Patient Involvement in Palliative Care

Introduction

Part 1: Examples from end-of-life care

Part 2: Why public and patient involvement?

Discussion

Conclusions

References

Chapter 4: Palliative Care: Choice, Equality, and Diversity

Introduction

The environment that breeds inequalities

The current context of care: the model in the United Kingdom

Understanding inequalities

International dimensions and global disparities

Conclusions: Building choice, equality, diversity, and responsiveness into comprehensive supportive and palliative care service

References

Chapter 5: Ethical Issues in Palliative Care

Introduction

Ethics in the context of palliative care

Principles of ethical decision making

Ethical issues in practice

Summary

Legal references and standard abbreviations

References

Useful resources

Chapter 6: Communication Skills in Palliative Care

Introduction

Barriers to effective communication

Facilitative skills

Structuring an assessment

Strategies for specific challenging scenarios

Future care planning: initiating end-of-life care discussions (see also Chapter 8, Advance Care Planning)

Dealing with denial or unrealistic expectations

When language is not shared

Conclusion

References

Chapter 7: Adapting to Death, Dying, and Bereavement

Introduction

Fear of death in society

Holistic needs assessment and identification of emotional distress

Personal spirituality

Adapting to the stark reality of dying

Adapting to bereavement

Summary

References

Chapter 8: Advance Care Planning

Introduction

Terminology and definitions

The rationale and evidence for ACP

Content of an ACP discussion

Undertaking ACP discussions

Recording the advance care plan

Appointing health-care proxies

What to do when individuals lack capacity for discussions

“Do not resuscitate” discussions

Concerns with ACP

Conclusions

References

Chapter 9: Pain and Its Management

Introduction

The problem of pain in palliative care

Definition of pain and the concept of “total pain”

Terminology

The biology of pain: neuroanatomy and neurophysiology of nociception and analgesia

Pain types and syndromes

Spiritual and cultural aspects of pain

Assessment of pain

Management of pain

Nondrug interventions

Conclusion

References

Further reading

Chapter 10: The Management of Gastrointestinal Symptoms and Advanced Liver Disease

Introduction

Cachexia, anorexia, and nutrition

Mouth care

Oesophageal problems

Nausea and vomiting

Malignant bowel obstruction

Hiccup

Endoluminal stents

Liver disease

Constipation

Rectal problems of advanced cancer

Stoma care

References

Further reading

Chapter 11: The Management of Respiratory Symptoms and Advanced COPD

Dyspnoea introduction

Dyspnoea pathophysiology

Dyspnoea aetiology

Dyspnoea assessment

Management of dyspnoea

Cough in palliative care

Assessment of cough

Management of cough

Suggested approach to cough

Pleural effusions in palliative care

Haemoptysis

Approach to advanced chronic obstructive pulmonary disease

References

Chapter 12: Managing Complications of Cancer

Introduction

Spinal cord compression

Superior vena cava obstruction (SVCO)

Bone metastases

Pathological fracture

Brain metastases

Surgical and interventional management of other sites of metastatic disease

Hypercalcaemia

Obstructive nephropathy

Haemorrhage

Itch

Fever and sweating

Side effects of palliative oncology treatments

Lymphoedema

Airway patency and care of the patient with a tracheostomy or laryngectomy

References

Chapter 13: Palliative Care for People with Progressive Neurological Disorders

Introduction

Background

Symptom management

Holistic care for patients with neurological conditions

End-of-life care

Conclusions

Supportive organisations in the United Kingdom

References

Chapter 14: Palliative Care for People with HIV Infection and AIDS

Introduction

Global epidemiology

HIV and AIDS in the United Kingdom

HIV and AIDS in the Americas

What exactly is palliative care in the context of HIV/AIDS?

Gold standards in palliative care

A new paradigm?

Issues relating to palliative care

Management of common physical symptoms

Issues relating to medication and HIV/AIDS in palliative care

The end of life

Conclusion

References

Further reading

Appendix A

Precautionary measures at home [12]

Chapter 15: Palliative Care for Children

Introduction

What kinds of children receive palliative care? Is it just children with cancer?

When is the right time for the clinician to consider palliative care for a child?

Does palliative care in children allow “curative” treatments to be continued?

What symptoms are children likely to have?

How do I deal with developmental differences in assessing symptoms?

Are there any tools to help with symptom assessment?

General principles for symptom management in children

Symptom patterns

Notes about some specific symptoms

What medications can I use in children and what doses?

How do I make a reliable prognostication for a child?

Does the primary care provider have a role in caring for children with complex conditions?

What is the best way to work with families of children in palliative care?

How do I advise parents to talk to their children about the illness?

Should families try to continue their routines, or is it better to focus on the ill child?

Is it helpful to tell siblings everything that is happening?

The final stages

The bereaved family

What kinds of professionals provide PPC?

Where is PPC provided (and what difference does it make)?

Conclusions

References

Chapter 16: Palliative Care for Adolescents and Young Adults

Introduction

The challenge of providing palliative care for young people

The psychology of adolescence and young adulthood

From health to illness

Quality of life

Toward the end of life

Conclusions

References

Chapter 17: Palliative Care for People with Advanced Dementia

Introduction

Types of dementia

Epidemiology

How is palliative care in advanced dementia different?

Communication issues

Advance care planning

Caring for the carers

Spirituality in dementia

Common physical symptoms in people with advanced dementia

Terminal care

Admiral nurses

Conclusions

References

Further reading

Useful resources

Chapter 18: Palliative Care in Advanced Heart Disease

Introduction

Heart failure

Prognosis and prognostic models

Interventional aspects of care

Barriers/challenges in extending palliative care to patients with HF

Palliative care delivery in HF

Symptom management

Dyspnoea

Pain

Fatigue

Anaemia

Oedema/ascites

Psychological/psychosocial

Discontinuing medical therapies

End-of-life care

Conclusion

References

Chapter 19: Palliative Care in Advanced Renal Disease

Introduction

ESRD management

Conservative management

Renal replacement therapy

Symptom management in ESRD

Pain

End of life

Conclusions

References

Chapter 20: Pressure Ulcer Care and the Management of Malignant Wounds

Introduction

Pressure ulcers

Malignant wounds

Conclusion

References

Further reading

Chapter 21: Terminal Care and Dying

Introduction

Helping people to achieve the preferred place for their death

When is a patient terminally ill?

How to assess the needs of a terminally ill patient

Clinical care at the end of life

Therapeutics at the end of life

Special needs of family and lay carers during the last days of life

Care after death

Conclusions

References

Appendices1

Appendix 1: Management of Pain with Fentanyl Transdermal Patches at End of Life

Appendix 2: Management of Pain at the End of Life

Appendix 3: Management of Breathlessness at the End of Life

Appendix 4: Management of Nausea and Vomiting at the End of Life

Appendix 5: Management of Respiratory Secretions at the End of Life

Appendix 6: Management of Restlessness and Agitation/Delirium at the End of Life

Appendix 7: Management Diabetes in the Last Days of Life: A Pragmatic Approach2

Appendix 8: Management of Bleeding at the End of Life

Chapter 22: The Syringe Driver and Medicines Management in Palliative Care

Introduction

Pharmacist in palliative care: a key team member

Use of drugs beyond licence

Medication compliance aids

Use of the “syringe driver” for continuous infusion in palliative care

Obtaining the drugs for the palliative care patient—seamless care at the hospital/hospice/community interface

Prescribing and dispensing of controlled drugs

Unwanted medicines or disposal of CDs after a death at home

Pharmacy and palliative care: the future

References

Further reading

Chapter 23: Complementary Approaches to Palliative Cancer Care

Introduction

Similarities between complementary therapies and holistic palliative care

Acupuncture

Dietary interventions

Healing

Herbalism

Homoeopathy

Massage, aromatherapy, and reflexology

Mind–body techniques: hypnosis, meditation, relaxation, and visualisation

Potential problems with CT approaches in palliative care settings

Supervision and responsibility

Interprofessional issues

Conclusions

References

Further reading

Chapter 24: Spirituality in Palliative Care

Introduction

Spirituality and the need for spiritual care

Who provides the spiritual care?

Impact of providing spiritual care on members of the professional care team

Strategies for addressing the spiritual aspect of palliative care

Spirituality and liminal time

Teamwork

Conclusion

References

Further reading

Index

Yvonne Carter has been very much in our minds throughout the preparation of the third edition of the Handbook of Palliative Care. Sadly, she was not part of the team on this occasion. After many years living with cancer, she died in 2009 but her voice has been heard loudly by us, giving encouragement and direction throughout the process. We dedicate this edition to her.

Copyright © 2012 by John Wiley & Sons, Inc. All rights reserved

Published by John Wiley & Sons, Inc., Hoboken, New Jersey

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Library of Congress Cataloging-in-Publication Data:

Handbook of palliative care / edited by Christina Faull … [et al.]. – 3rd ed. p. ; cm. Includes bibliographical references and index. ISBN 978-1-118-06559-4 (pbk. : alk. paper) I. Faull, Christina. [DNLM: 1. Palliative Care–Handbooks. WB 39] 616′.029–dc23 2012014815

Cover Image: © The Map Foundation Cover Design: Michael Rutkowski

List of Contributors

Debbie Allanson, RGN, HND

Lymphoedema Clinical Nurse Specialist

The Queen's Centre for Oncology and Haematology

Hull, UK

Megory Anderson, MA

Director

Sacred Dying Foundation

San Francisco, USA

Rachael Barton, MA MSc DM MRCP FRCR

Consultant Clinical Oncologist and Honorary Senior Lecturer

The Queen's Centre for Oncology and Haematology

Hull, UK

Fraser Black, MD, CCFP, FCFP

Medical Director and Palliative Care Physician, Victoria Hospice, Canada InspireHealth, Integrative Cancer Center, Victoria, Canada

Clinical Professor, University of British Columbia, Canada International Network for Cancer Treatment and Research (Belgium/Canada)

Deb Braithwaite, MD, CCFP, FCFP

Community Lead and Palliative Care Physician Victoria Hospice

Victoria, Canada

Camara van Breemen, MN, CHPCN(c)

Nurse Practitioner (F)

Canuck Place Children's

Hospice, Vancouver, Canada

Sharon de Caestecker RN, BN, MA

Director of Education and Training

LOROS, The Leicestershire and Rutland Hospice

Leicester, UK

Rodger Charlton, MD, FRCGP

Associate Clinical Professor, Division of Primary Care, Nottingham Medical School

Honorary Professor

College of Medicine

Swansea University

Swansea, UK

Andrew Chilton, MBBS, FRCP

Consultant and Honorary Senior Lecturer

Gastroenterologist and Hepatologist

Kettering General Hospital Foundation Trust

Kettering, UK

Monica Compton, BS, AAS

Nutrition Team Dietitian and Lead Dietetic Prescribing Advisor

Kettering General Hospital

NHS Foundation Trust

Kettering, UK

Rachael E. Dixon, MBBS, BSc, MRCP

Consultant in Palliative Medicine

Dove House Hospice

Hull, UK

Joanna Dunn, MBBS, MRCP, MA

Specialist Registrar in Palliative Medicine

UCLH,

Camden and Islington Palliative Care Team

London, UK

Jacqueline Edwards, RGN, RSCN, MSc, BSc (Hons)

Head Nurse, Children, Quality and Governance Heart of England NHS Foundation Trust Bordesley Green East Birmingham, UK

Christina Faull, BMedSci, MBBS, MD, FRCP, PGCert Med Ed, Dip Clin Hypnosis

Consultant in Palliative Medicine

University Hospitals of Leicester and LOROS

The Leicestershire and Rutland Hospice

Leicester, UK

Liz Grant, PhD

Deputy Director

Global Health Academy

University of Edinburgh

Edinburgh, UK

Jo Griffiths, MBChB, MRCPCH, Dip Pall Med (Paeds)

Consultant in Paediatric Palliative Medicine & Community Child Health Abertawe Bro Morgannwg Health Board, Swansea, Wales, UK

Christine Hirsch, BPharm, PhD

Lecturer in Clinical Pharmacy

Medical School

University of Birmingham, Birmingham, UK

Christine Jones, MD, CCFP, FCFP

Palliative Medicine Physician

Victoria Hospice Society

Vancouver Island Health Authority

Victoria, Canada

Daniel Kelly, PhD, MSc, BSc, RN, PGCE, FRSA

Royal College of Nursing Chair of Nursing Research

School of Nursing & Midwifery Studies

Cardiff University

Wales, UK

Victoria Lidstone, BM, FRCP

Consultant in Palliative Medicine & All Wales Clinical Lead for transition in Palliative Care

Department of Paediatric Palliative Care

University Hospital of Wales

Cardiff, UK

Ryan Liebscher, MD, CCFP

Palliative Care Physician

Victoria Hospice

Victoria, Canada

Maria McKenna, MBBS, MRCP

Newcastle upon Tyne Hospitals NHS Foundation Trust, UK

Daniel Munday, MBBS, FFARCSI, DRCOG, MRCGP, Dip Pall Med, PhD, FRCP

Associate Clinical Professor/Honorary Consultant in Palliative Medicine

Division of Health Sciences, Warwick Medical School

Coventry, UK

Alex Nicholson, MBBS, FRCP

Consultant in Palliative Medicine, South Tees Hospitals NHS Foundation Trust, Visiting Fellow, University of Teesside School of Health and Social Care,

Middlesbrough, UK

David Oliver, BSc, FRCP, FRCGP

Consultant in Palliative Medicine

Wisdom Hospice

Rochester, UK

And

Honorary Reader

Centre for Professional Practice

University of Kent

Kent, UK

Wendy Prentice, MBBS, FRCP, MA

Consultant/Honorary Senior Lecturer in Palliative Medicine

King's College Hospital NHS Foundation Trust

Cicely Saunders Institute

London, UK

Aziz Sheikh, BSc, MBBS, MSc, MD, DRCOG, DCH, FRCGP, FRCP

Professor of Primary Care Research & Development

Director of Research Centre for Population Health Sciences

University of Edinburgh

Edinburgh, UK

Harold Siden, MD, MHSc, FRCPC

Medical Director

Canuck Place Children's Hospice

Clinical Associate Professor, Pediatrics

University of British Columbia

Vancover, Canada

Surinder Singh, BM, MSc, FRCGP

Senior Clinical Lecturer in General Practice

Research Department of Primary Care & Population Health

UCL Medical School

London, UK

Neil Small, BSc (Econ), MSW, Phd.

Professor of Health Research

School of Health Studies

University of Bradford

Bradford, UK

Sue Taplin, BA (Joint Hons), MA/PgDipSw, DSW

Education Facilitator, LOROS The Leicestershire and Rutland Hospice

Leicester, UK

Nick Theobald, MA, MSc, MBBS

Clinical Lecturer and Associate Specialist

St Stephen's Centre

Chelsea and Westminster Hospital

London, UK

Elizabeth Thompson, DMOxon, MBBS, MRCP, FFHom

Lead Clinician/Consultant Homeopathic Physician and

Honorary Senior Lecturer in Palliative Medicine

University Hospitals Bristol NHS Foundation Trust

Bristol Homeopathic Hospital

Bristol, UK

Mary Walding, RGN, BSc (Hons), PGDip

Clinical Nurse Specialist Palliative Care

Katharine House Hospice

Banbury, UK

Richard K.M. Wong, MA, MD, FRCP

Consultant Geriatrician

University Hospital of Leicester NHS Trust

Leicester, UK

Catherine Zollman, BA(Oxon), MBBS, MRCP, MRCGP

GP

Bristol and Lead Doctor

Penny Brohn Cancer Care

Bristol, UK

Foreword

Every minute over 100 people die in the world but far too many people still do not get the palliative and end-of-life care they need or want. Even patients in countries with well-developed health-care systems such as Europe, Australasia, and North America, who could benefit from the full range of palliative care support and services, never have that opportunity. The consequence is that many die with the distress of uncontrolled symptoms and with relatives and carers who are unsupportive. A difficult time may be made worse because no one has established the wishes of the patient, and they die in a place they would not have chosen and are perhaps subject to inappropriate and futile interventions, such as resuscitation, that they would have declined. Furthermore, it is still unfortunately true that access to palliative care services varies according to age, diagnosis, gender, and geography, and the basic levels of palliative care that are available are of inconsistent quality. The time has come to change this and to change it for good.

My vision is for a “good death” to be the norm. We only get one chance to get it right for people living in the late stages of incurable illness and those who are dying. I believe the Handbook of Palliative Care will undoubtedly contribute to achieving this vision by providing evidence-based knowledge for doctors and nurses, and for other members of the multiprofessional team. This new edition is highly impressive and should be required reading for all those involved in delivering palliative care at any level wherever they work in the world. As a practicing general practitioner, I know on a daily basis how a clinician can be faced with complex clinical and ethical dilemmas in patient management. I would find a resource like this book very reassuring, providing as it does a wide range of trusted knowledge, experience, and expertise.

An ageing population with complex health and social care needs requires a new caring approach and a new deal for the dying. All health-care systems need to effect a change in clinical practice to recognise the dying patient earlier and improve access for these patients to the palliative care and hospice approach—for example, through use of supportive and palliative care registers—particularly for patients with conditions other than cancer. The development of better generalists is a must, as is implementing comprehensive evidence-based guidelines for palliative care. Key to grasping this opportunity is development of the workforce.

And we need to achieve fundamental changes in public and professional attitudes. A society that is more comfortable with talking about death, dying, and bereavement is much needed. I am therefore delighted that the handbook includes a chapter on communication skills. I also welcome the new chapter on spirituality in this edition. Spirituality is often the missing piece in palliative care plans, even though meeting the individual spiritual needs of a patient is an important part of that person's journey at the end of life.

In 2008, readers of the British Medical Journal voted “palliative care beyond cancer” as the area of health care in which doctors could make the most improvement. This is an outstanding book that is to be thoroughly commended for its broad range of clinical issues and particularly for its focus on noncancer palliative care. All clinicians will recognise that the noncancer patient presents challenges when we are trying to determine the starting point for the last few months of life, but this is critical if we are to identify those patients who need palliative attention and for whom we should be starting advance care planning discussions. I am glad to see practical guidance on this area of practice.

We know that there is still considerable room for improvement in palliative care. Although maybe 70% of people would prefer to die at home, more than half currently die in hospital in the United Kingdom. This is replicated in many countries in the developed world. The realities of living and dying well are at the heart of palliative care, an important clinical area that deserves to be more widely understood.

I restate my ambition to reduce the fear of dying and make a “good death” the norm. The authors of this book share their expertise, experience, and wisdom in guiding us towards these goals. I am confident that good progress will be made and I invite readers ofThe Handbook of Palliative Care to join me in making good end-of-life care not only a priority but also a reality.

Prof. Mayur Lakhani, CBE, FRCGP, FRCP (Edin), FRCPPracticing GP and Chairman of theNational Council for Palliative Care and theDying Matters Coalition (www.ncpc.org.uk andwww.dyingmatters.org)Past Chairman, Royal College of General PractitionersNational Council for Palliative CareLondon, UK

Preface to the Third Edition

In preparing the third edition of the Handbook of Palliative Care, we are encouraged and grateful that the previous editions have been so well received. However, both the specialty of palliative care and the place it occupies in modern health and increasingly social care continues to evolve. The third edition seeks not only to retain the strengths of the previous editions but also to prove responsive to feedback and to have been adapted with additional content and chapters reflecting relevant developments in palliative care practice and scope.

Our main aim has been to provide a handbook that is informative and practical, thereby supporting the care professional delivering palliative care in any setting and enhancing the quality of both everyday and unusual clinical practice. Thus, the content on assessment and symptom management, communication skills, and ethics remains key and emphasises the essential nature of a holistic, patient-centred approach to care. We have also included sections that allow more expansion into some philosophical and historical background in order to provide breadth and balance in a handbook about a type of care that is wide-ranging and deeply rooted. For example, the chapters User Voices, Palliative Primary Care, and Spirituality in Palliative Care support this ambition. These dual approaches are intended to improve the understanding of what really “makes palliative care work” as well as increasing the confidence and skills of those working to support patients and their families. As in previous editions, emphasis is placed throughout on the importance of teamwork and highlighting the multidisciplinary nature of palliative care. Never forgetting that “the team” must include the patient and those who are important to them.

Taking a global perspective, the need for palliative care remains great. Estimates suggest that more than 100 million people worldwide would benefit from palliative care provision every year, yet only a small fraction of those individuals in need actually receive the necessary support. Worldwide we know that close to three-quarters of people diagnosed with cancer and other life-limiting illnesses present late with incurable disease and that this is accompanied by a burden of significant symptoms and suffering that is both physical and nonphysical.

There continues to be an expanding knowledge and recognition of how palliative care can benefit not only patients with cancer but also those with noncancer illnesses, and the updated chapters include significant new content in the areas of heart failure, renal failure, advanced respiratory diseases, and HIV and AIDS. We have also added a new chapter Palliative Care for People with Advanced Dementia, arguably the biggest issue on the horizon. The chapter Palliative Care for Adolescents and Young Adults now includes the important issue of transition from children's to adult palliative care for the growing number of young people with life-limiting diseases surviving to their early adult years.

Advance care planning is another area that is recognised increasingly to be fundamental to sound holistic patient-centred palliative care provision, and a new chapter gives the reader a sure grounding in key considerations.

Table P.1 Drug names used in Handbook of Palliative Care.

Recommended International Non-proprietary Name (rINN) (European market)British Approved Name (now replaced by rINN)United States Adopted Name (used in USA in preference to rINN)AspirinOften known as aspirin but also Acetyl salicylic acidNo UK equivalentBenzonatateCalcitoninSalcatoninCalcitoninChlorphenamineChlorpheniramineChlorpheniramineColestyramineCholestyramineNot marketed in UKDesipramineFurosemideFrusemideFurosemideGlitazonesThiozolidinedionesGuaiphenesinGuaifenesinNot marketed in UKHydrocodoneHyoscineScopolamineNo UK equivalentLevodropropizineLevomepromazineMethotrimeprazineLevothyroxineThyroxineNo UK equivalentMiltefosine (hexadecylphosphocholine)ParacetamolAcetaminophenPethidineMeperidinePhenobarbitalPhenobarbitoneRifampicinRifampinRiluzoleRisperidoneSSennaSertralineSilver sulphadiazineSodium citrateSodium cromoglicateSodium cromoglycateCromolyn sodium and Sodium cromoglycateThis table lists drugs which may be known by different names in Europe and North America. Names shown in bold appear in the text.

In this third edition, a decision was made to expand the remit of the text beyond the perspectives of the United Kingdom, and the result has been a book that has been authored and edited by a team drawn from the United Kingdom and North America. Contributing to this edition are new authors from two longstanding hospice palliative care programmes in Canada. Victoria Hospice was among the early hospice palliative care programmes established in Canada, and Canuck Place Children's Hospice in Vancouver was the first free-standing children's hospice in North America.

There is so much to learn from one another in making progress to address the need for increased access to palliative care worldwide, and we hope that this collaboration has added a richness and variety to the handbook's content that will appeal to all readers. Naturally, there are some differences in terminology and language and we have tried to accommodate these as far as possible while leaving the content intelligible to all. We recognise that drug names vary in different countries—sometimes subtly, sometimes significantly—and have included a list of drugs used in the handbook to aid the reader to align their European and North American names (see Table P.1). For important drugs that are mentioned often in the text, both names are used. Spellings have followed the British tradition. Where terminology varies, we have tried to explain this within the text of the relevant chapter. An interpretation of abbreviations also appears in the front of the book (page xvi).

It is our hope that this third edition will succeed in its aims of keeping prominent those parts of hospice and palliative care that we know make a difference to patients and families while also incorporating new knowledge and approaches that will help improve the provision of palliative care to patients and families worldwide. Thank you for your efforts in this regard by using this handbook and by providing the care that you do to patients, families, and communities around the world.

Acknowledgements

This book has only been made possible by the hard work of many contributing colleagues and we hope that this edition does justice to the efforts of all the individuals who have given so much of their time over and above their normal duties and responsibilities. We are aware of how much personal complexity some of the writing team have been dealing with and we should like to pay tribute not only to their determination in fulfilling their commitment to this book but also to their efforts in trying to ensure that high-quality palliative care is available to those who need it. We would particularly like to acknowledge Richard Woof who contributed so much to the first edition and whose legacy lasts in this third edition.

Acknowledgement: Cover illustration

A water-colour titled Between Night and Day (1995) reproduced with kind permission of the artist Michele Angelo Petrone who sadly died in 2007. It is reproduced with kind permission of the MAP Foundation, an arts in health organization founded by Mr. Petrone to promote expression, communication, and understanding for people affected by life-threatening illness. Michele painted and wrote of his experience during treatment for Hodgkin's disease:

‘As time goes by, night follows day and day follows night- a natural cycle without beginning, without end and without gaps. Life's cycle continues without interruption, or at least it should do. Suddenly illness arrives, uninvited, unexplained. I found myself caught between life and death, light and dark, banished to an unknown place- between night and day. The illness forced itself into my life where there was no place for it. The arrival of the illness stole a place and time that should have been destined for better things.’

List of Abbreviations

AIDSacquired immune deficiency syndromeADLActivities of Daily LivingACPadvance care planningADRTadvance decision to refuse treatmentADadvance directiveADAAfter Death AnalysisANDallow natural deathALSamyotrophic lateral sclerosisBPIBrief Pain InventoryCPRcardiopulmonary resuscitationCVDcardiovascular diseaseCPcare professionalCKDchronic kidney diseaseCOPDchronic obstructive pulmonary diseaseCNSsclinical nurse specialistsCHFcongestive heart failureCDscontrolled drugsDNACPRdo not attempt cardiopulmonary resuscitationDNAR/PNDdo not attempt resuscitation/permit natural deathEoLCSend-of-life care strategyESRDend-stage renal diseaseEAPCEuropean association for palliative careGIgastrointestinalGMCGeneral Medical CouncilGPgeneral practitionerGFRglomerular filtration rateGSFGold Standards FrameworkHF heart failureHIVhuman immunodeficiency virusHDHuntington's diseaseIVintravenousLPAlasting power of attorneyLANSSLeeds assessment of neuropathic symptoms and signsLLCslife-limiting conditionsLCPLiverpool Care PathwayMSCCmalignant spinal cord compressionMLDmanual lymphatic drainageMCAMental Capacity ActMRmodified releaseMNDmotor neuron diseaseMNDAMotor Neurone Disease AssociationMDTmultidisciplinary teamMSmultiple sclerosisMSAmultiple system atrophyMDmuscular dystrophiesNGnasogastricNHSNational Health ServiceNICENational Institute for Health and Clinical ExcellenceNPSANational Patient Safety AgencyNMDAN-methyl-D-aspartateNIPPVnoninvasive positive pressure ventilationNIVnoninvasive ventilationNSAIDnonsteroidal antiinflammatory drugNRnormal releaseOToccupational therapyPOoralPDParkinson's diseasePCTprimary care trustPEGpercutaneous endoscopic gastrostomyPPIproton pump inhibitorRFAradiofrequency ablationSSRIselective serotonin reuptake inhibitorSNRIserotonin noradrenaline reuptake inhibitorsSLDsimple lymphatic drainageSCsubcutaneousSVCsuperior vena cavaTENStranscutaneous electrical nerve stimulationTCAtricyclic antidepressantWHOWorld Health Organization

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The Context and Principles of Palliative Care