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Palliative Care Nursing at a Glance



Edited by

Christine Ingleton

Professor of Palliative Care Nursing
School of Nursing and Midwifery
The University of Sheffield
Sheffield, UK

Philip J. Larkin

Professor of Clinical Nursing [Palliative Care]
Head of Discipline, Children's Nursing
Director of Clinical Academic Partnership
University College Dublin School of Nursing,
Midwifery and Health Systems
and Our Lady's Hospice and Care Services
University College Dublin
Dublin, Ireland



Series Editor: Ian Peate









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Contributors

Liz Bryan
Director of Education and Training
St Christopher's Hospice
and Lecturer in Palliative Care Nursing King's College London
London, UK

Amanda Clarke
Professor of Nursing and Head of the Department of Healthcare
Northumbria University
Newcastle-upon-Tyne, UK

Mark Cobb
Clinical Director and Senior Chaplain
Sheffield Teaching Hospitals NHS Foundation Trust
Sheffield, UK

Michael Connolly
Lecturer
University College Dublin School of Nursing
Midwifery and Health System
Dublin, Ireland
and Head of Education
All Ireland Institute of Hospice and Palliative Care

Liz Darlison
Consultant Nurse and Mesothelioma UK Director of
Services
University Hospitals of Leicester NHS Trust and
Mesothelioma UK

Joanna De Souza
Lecturer in Nursing
King's College London
London, UK

Pam Firth
Independent Consultant in Psychosocial Palliative Care
International Palliative Care Social Work Expert
Co-chair of the EAPC Social Work Task Force
St Albans, UK

Niamh Finucane
Co-ordinator of Social Work and Bereavement Services
St. Francis Hospice
Dublin, Ireland

Martyn Geary
Senior Lecturer
De Montfort University
Leicester, UK

Deborah Hayden
Nurse Tutor and Lecturer in Palliative Care
Our Lady's Hospice and Care Services
Dublin, Ireland

Jo Hockley
Honorary Fellow
University of Edinburgh
Edinburgh, UK

Gill Horne
Director of Patient Care
Rowcroft Hospice
Torquay, UK

Sarah Human
Consultant in Palliative Medicine
Rowcroft Hospice
Torquay, UK

Christine Ingleton
Professor of Palliative Care Nursing
School of Nursing and Midwifery
The University of Sheffield
Sheffield, UK

Philip J. Larkin
Professor of Clinical Nursing [Palliative Care]
Head of Discipline, Children's Nursing
Director of Clinical Academic Partnership
University College Dublin School of Nursing, Midwifery
and Health Systems
and Our Lady's Hospice and Care Services
University College Dublin
Dublin, Ireland

Peter Lawlor
Associate Professor
Division of Palliative Care
University of Ottawa
Ontario, Canada

Rachel Lewis
Advanced Nurse Practitioner
Central Manchester Foundation Trust
Manchester, UK

Mari Lloyd-Williams
Professor of Medicine
Academic Palliative and Supportive Care Studies Group
(APSCSG)
University of Liverpool
Liverpool, UK

Lorna Malcolm
Senior Physiotherapist
St Christopher's Hospice
London, UK

Katie Marchington
Palliative Care Physician
Department of Psychosocial Oncology & Palliative Care
University Health Network and Clinician Teacher
Department of Family and Community Medicine
University of Toronto
Ontario, Canada

Dorry McLaughlin
Lecturer in Palliative Care and Chronic Illness
Queen's University
Belfast, UK

Clare McVeigh
Lecturer in Palliative Care
Northern Ireland Hospice
Belfast, Northern Ireland

Bill Noble
Medical Director
Marie Curie, UK

Helen Noble
Lecturer, Health Services Research
and Visiting Honorary Research Fellow
City University
London, UK

Brian Nyatanga
Senior Lecturer and Lead for the Centre for Palliative Care
University of Worcester
Worcester, UK

David Oliver
Consultant in Palliative Medicine
Wisdom Hospice, Rochester
and Honorary Reader
University of Kent
Canterbury, UK

Cathy Payne
Palliative Care Educator
Our Lady's Hospice and Care Services
Dublin, Ireland

Marian Peacock
Senior Research Associate
International Observatory on End of Life Care
Lancaster University
Lancaster, UK

Alison Pilsworth
Education Facilitator in Palliative Care
LOROS Hospice
and Honorary Senior Lecturer
De Montfort University
Leicester, UK

Jackie Robinson
Palliative Care Nurse Practitioner
University of Auckland
Auckland, New Zealand

Deirdre Rowe
Occupational Therapist Manager / Deputy Head of
Clinical Services
Our Lady's Hospice and Care Services
Dublin, Ireland

Tony Ryan
Senior Lecturer
The University of Sheffield
Sheffield, UK

Pat Schofield
Professor of Nursing and Director for the Centre for
Positive Ageing
University of Greenwich
London, UK

Ann Sheridan
Lecturer and Researcher in Mental Health
University College Dublin
Dublin, Ireland

Paula Smith
Senior Lecturer
Department of Psychology
University of Bath
Bath, UK

Helena Talbot-Rice
Senior Physiotherapist and AHP Lead
St Christopher's Hospice
London, UK

Geraldine Tracey
Palliative Care Advanced Nurse Practitioner
Our Lady's Hospice and Care Services
Dublin, Ireland

Mary Turner
Research Fellow
International Observatory on End of Life Care
Lancaster University
Lancaster, UK

Pauline Ui Dhuibhir
Research Nurse in Palliative Medicine
Our Lady's Hospice and Care Services
Dublin, Ireland

Clare Warnock
Practice Development Sister
Weston Park Hospital, Specialist Cancer Services
Sheffield Teaching Hospitals NHS Foundation Trust
Sheffield, UK

Preface

An edited work is always a team effort, and we appreciate the help and co-operation of many contributors. We have been very fortunate in obtaining chapters from some of the leading experts in palliative care. We have selected authors who represent a range of expertise and are drawn from different professional and academic backgrounds, including academics, clinicians, educators and managers. We believe that the diversity of backgrounds and perspectives enhance the depth of coverage.

However, it does mean that the writing styles vary, and whilst editorial work has been undertaken we are keen that the chapters reflect the views and perspectives of our authors rather than conform to our stances.

As with other volumes in the ‘At a Glance’ series, it is based around a two-page spread for each main topic, with figures and texts illustrating the main points at a glance. Although primarily designed as an introduction to palliative and end-of-life care, it should be a useful undergraduate revision aid, together with a companion website featuring interactive multiple choice questions and case studies. Such a brief text cannot provide a complete guide to palliative care practice; however, the additional references accompanying each chapter will aid a deeper understanding of the key subject areas. Errors and omissions may have occurred, and these are entirely our responsibility.

We are grateful to the reviewers (educators and students) who provided helpful comments which we attempted to incorporate and to Kate Chadwick (The University of Sheffield), who provided excellent administrative support throughout the process. Finally, thanks to staff at Wiley Blackwell, including Karen Moore, Madeleine Hurd and James Watson, and also Amit Malik at Aptara, for their prompt and helpful assistance.

Christine Ingleton
Philip J. Larkin

Abbreviations

A&EAccident & Emergency
ACEAngiotensin-Converting Enzyme
ACPAdvance Care Planning
ADRTAdvance Decisions to Refuse Treatment
AHDAdvance Healthcare Directive
ALSAmyotrophic Lateral Sclerosis
ACBAmber Care Bundle
ANPAdvanced Nurse Practitioner
AusTOMs-OTAustralian Therapy Outcome Measures for Occupational Therapy
AVAtrioventricular
BEDSBrief Edinburgh Depression Scale
BMABritish Medical Association
BPBlood Pressure
BScBachelor of Science
CAMConfusion Assessment Method
CKDChronic Kidney Disease
CKMConservative Kidney Management
CNSClinical Nurse Specialist
C9ORF72Chromosome 9 Open Reading Frame 72
CO2Carbon Dioxide
COPDChronic Obstructive Pulmonary Disease
COPMCanadian Occupational Performance Measure
CPRCardiopulmonary Resuscitation
CSCIContinuous Subcutaneous Infusion
CTScan Computed Tomography Scan
CTZChemoreceptor Trigger Zone
CVACerebrovascular Accident
DisDATDisability Distress Assessment Tool
dLDecilitre
DNDistrict Nurse
DNADeoxyribonucleic Acid
DNACPRDo Not Attempt Cardiopulmonary Resuscitation
DNRDo Not Resuscitate
DSMDiagnostic and Statistical Manual of Mental Disorders
eGFREstimated Glomerular Filtration Rate
EMGElectromyography
EOLEnd of Life
EPAEuropean Pathway Association
ESASEdmonton Symptom Assessment Scale
FEVForced Expiratory Volume
FUFollow Up
FUSFused in Sarcoma
GFRGlomerular Filtration Rate
GIGastrointestinal
GMCGeneral Medical Council
GPGeneral Practitioner
GSFGold Standards Framework
HVHealth Visitors
ICDInternal Cardiac Defibrillators
ICD10The International Classification of Diseases, Tenth Revision
ICPIntegrated Care Pathway
IMIntramuscular
IQIntelligence Quotient
IVIntravenous
LACDPLeadership Alliance for the Care of Dying People
LCPLiverpool Care Pathway
LPALasting Power of Attorney
MDTMulti-disciplinary Team
mgMilligram
MLBMulti-layer Bandaging
MLDManual Lymph Drainage
mLMillilitre
mmol/LMillimole per Litre
MNDMotor Neurone Disease
MPQMcGill Pain Questionnaire
MRCMedical Research Council
MRIScan Magnetic Resonance Imaging Scan
MSCCMalignant Spinal Cord Compression
N&VNausea and Vomiting
NHSNational Health Service
NICENational Institute for Health and Care Excellence
NMCNursing and Midwifery Council
NSAIDNon-steroidal Anti-inflammatory Drug
NTRNationally Transferable Role
NYHANew York Heart Association
ONSOffice for National Statistics
OPGOffice of the Public Guardian
OTOccupational Therapy
PASPhysician Assisted Suicide
PCTPrimary Care Trust
PEGPercutaneous Endoscopic Gastrostomy
PhDDoctor of Philosophy
PHQPatient Health Questionnaire
PIGPrognostic Indicator Guide
PIPPatient Information Point
POBy Mouth
PRPer Rectum
PRNAs Required
PTHParathyroid Hormone
QoLQuality of Life
RCRoyal College
RCNRoyal College of Nursing
RGNRegistered General Nurse
RMNRegistered Mental Nurse
RNRegistered Nurse
RRRRapid Response Reports
SCSubcutaneous
SCMState Certified Midwife
SDLSimple Lymph Drainage
SOD1Superoxide Dismutase 1
SPSupporting People
SPCSpecialist Palliative Care
SPICTSupportive and Palliative Care Indicators Tool
SPMISevere and Persistent Mental Illness Stat Immediately
SVCOSuperior Vena Cava Obstruction
TDP43TDP TAR DNA-Binding Protein
TIATransient Ischaemic Attack
TKIsTyrosine Kinase Inhibitors
t-PATissue Plasminogen Activator
U&EUrea and Electrolytes
UKUnited Kingdom
USAUnited States of America
WHOWorld Health Organization

About the companion website



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Introduction

Setting the scene

Introduction

The aim of this book is to provide an overview of current issues in supporting dying patients and their families in the community (patient’s own home, nursing/residential setting), hospice or in an acute hospital setting. This introduction to palliative care is about the care of people facing death, both those who will die and those who accompany them – families, friends, community workers, volunteer workers and healthcare and social care workers. It is estimated that every year more than 20 million patients need palliative care at the end of life.

What is palliative care?

The use of specialist palliative care services is based on an assumption that people share a common understanding of the terminology and purpose of palliative care. Definitions and terminology are poorly understood and not agreed. Some of the terms used to describe palliative care are shown in Figure 1.1.

There is now a drive in many developed countries, including the United Kingdom, to introduce palliative or supportive care much earlier in the course of an illness or the so-called ‘illness trajectory’. One definition of palliative care is:

‘Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’ (WHO, 2014)

Palliative care:

It is helpful to differentiate between ‘specialist’ and ‘generalist’ palliative care. The National Council for Hospice and Specialist Palliative Care Services (2002) differentiates between general palliative care, which ‘is provided by the usual professional carers of the patient and family with low to moderate complexity of palliative care need’, and specialist palliative care services, which ‘are provided for patients and their families with moderate to high complexity of palliative care need. They are defined in terms of their core service components, their functions and the composition of the multi-professional teams that are required to deliver them.’

Who receives palliative care?

Access to palliative care typically relates to the availability of services, the funding models of healthcare and the nature of disease. In the United Kingdom, despite repeated calls to widen access to patients, whatever their diagnosis, who are nearing the end of life, approximately 95% of those referred to hospices have cancer.

Where is palliative care delivered?

Palliative care is a ‘philosophy of care’; therefore, it can be delivered in a variety of settings, including institutions such as hospitals, in-patient hospices and care homes for older people as well as in people’s own homes. Most patients with advanced illness are in the care of the primary healthcare team, consisting of general practitioners, community nurses and associated healthcare and social care professionals. Care is therefore delivered in patients’ homes, where they spend the majority of their time during the final year of life.

Home is overwhelmingly the preferred place of care for the majority of people (Gomes and Higginson, 2011). General practitioners and community nurses may make referrals to specialist palliative care providers. Specialist palliative care services themselves offer a range of provision, from a single specialist nurse to a comprehensive multi-disciplinary team. Specialist palliative care services have developed an array of different types of provision and include the following:

Who provides palliative care?

There is a risk that in providing a list of who provides palliative care some people may be overlooked. With this in mind, Figure 1.2 offers a broad overview of the types of individuals and agencies that may be engaged in providing both paid and unpaid palliative care.

References

  1. Gomes B and Higginson I (2011) International trends in circumstances of death and dying amongst older people. In Gott M and Ingleton C (eds). Living with Ageing and Dying: Palliative Care for Older People. Oxford: Oxford University Press. pp. 3–19.
  2. National Council for Hospice and Specialist Palliative Care Services (2002) Definitions of Supportive and Palliative Care. London: NCHSPCS.
  3. WHO (2014) http://www.who.int/mediacentre/news/releases/2014/palliative-care-20140128/en (accessed 1st July 2015).