Palliative Care Nursing at a Glance E-Book

• Herausgeber: John Wiley & Sons
• Kategorie: Fachliteratur
• Serie: Wiley Series on Cognitive Dynamic Systems
• Sprache: Englisch

Seitenzahl: 291

Veröffentlichungsjahr: 2015

Beschreibung

Palliative Care Nursing at a Glance is the perfect companion for nursing students, health and social care practitioners, and all those involved in palliative care delivery, both in the clinical and home setting.  Written by an expert team of academics, nurses, educators and researchers it provides a concise and easy-to-read overview of all the concepts and clinical decision-making skills necessary for the provision of good-quality palliative and end-of-life care.

Divided into six sections, the book includes coverage of all key clinical applications, principles of symptom management, palliative care approaches for a range of conditions and patient groups, exploration of the roles of the multi-professional team, as well as ethical challenges.

• Superbly illustrated, with full colour illustrations throughout
• Provides information on delivery of care in a range of settings
• Broad coverage makes it ideal reading for anyone involved in palliative care delivery
• User-friendly and accessible resource for those working in both specialist and non-specialist adult settings

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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

This edition first published 2015 © 2015 by John Wiley & Sons Ltd.

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Library of Congress Cataloging-in-Publication Data

Palliative care nursing at a glance / edited by Christine Ingleton, Philip Larkin.      p. ; cm. - (At a glance series)    Includes bibliographical references and index.    ISBN 978-1-118-75921-9 (paper)   I. Ingleton, Christine, editor. II. Larkin, Philip (Philip Joseph), editor. III. Series: At a glance series (Oxford, England).    [DNLM: 1. Hospice and Palliative Care Nursing-Handbooks. WY 49]   R726.8   616.02'9-dc23

2015024796

A catalogue record for this book is available from the British Library.

Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books.

Cover image: iStock image: 8849432Large_03-16-09 © Chris-Schmidt

CONTENTS

Contributors

Preface

Abbreviations

About the companion website

Part 1: Introduction

1: Setting the scene

Introduction

What is palliative care?

Who receives palliative care?

Where is palliative care delivered?

Who provides palliative care?

References

2: Managing the needs of family caregivers

Introduction

What is a family caregiver?

Key assessment issues for family caregiving

The consequences of caregiving

Critical points for reflection

Reference

3: Principles of effective communication

Effective communication

Difficult conversations

Looking ahead

References

4: Advance care planning

What is advance care planning?

Key principles of ACP

Putting ACP into practice

Aims in clinical consultation

Summary

References

5: Delivering palliative approaches in different care contexts

At home

Nursing and residential care homes

Acute hospitals

Hospices

Day care, out-patient and drop-in clinics

References

6: Integrated care pathways

What is an integrated care pathway?

ICPs used in palliative care

Variances

Summary

References

Part 2: Clinical applications

7: Principles of symptom management

Introduction

Always offer a holistic assessment and evaluation

Treating symptoms and goals of care

The importance of anticipation

Focus on the individual

Reassess and evaluate

Provide clear explanation and information

Reference

8: Best practice in pain management

Best practice in pain management

Acute and chronic pain

Management of pain

The pain history

References

9: Managing pain

Managing pain

Pain assessment

Opioid analgesic therapy

References

10: Complex pain problems and treatment challenges

Bone pain

Radiotherapy and chemotherapy

Nerve blocks

Opioid side effects and toxicity

Nursing role

References

11: Managing nausea and vomiting

Introduction

Prevalence

Common causes

Assessment

Management

Medications

Evaluation

References

12: Managing constipation

Introduction

Assessment

Constipation and opioids

Management: fact and fiction

Treatment

Evaluation

Management at the end of life

References

13: Understanding depression

Assessment

Screening for depression

Pharmacological and non-pharmacological methods of treatment

References

14: Understanding delirium and confusion

Definition and descriptors

Assessment

Management

References

15: Managing myoclonus, tremors and muscle spasms

Introduction

Causes

Assessment

Management

Medications

Nursing care

References

16: Managing lymphoedema

Introduction

What is lymphoedema?

Assessment

Management

References

17: Managing hypercalcaemia of malignancy

Introduction

Definition

Calcium regulation in the body

Pathophysiology

Symptoms and signs

Management

Other measures

References

18: Assessing and managing oral hygiene

Introduction

Assessment

Best practice principles for oral care

Clinical treatment

Evaluation

Management at the end of life

References

19: Caring for people with dysphagia

Introduction

Assessment

Addressing treatment and goals of care

The role of ‘tube’ feeding

Management at the end of life

Reference

20: Managing breathlessness

Introduction

Causes

Assessment

Management

Pharmacological interventions in breathlessness

Non-pharmacological interventions in breathlessness

References

21: Cough and haemoptysis

Introduction

Prevalence

Causes

Assessment

Management and nursing care

Major haemoptysis

Summary

References

22: Explaining and exploring cachexia, anorexia and fatigue

Definitions

Causes

Management

Exercise as a palliative intervention

References

23: Continual subcutaneous infusion: using a syringe pump

What is continuous subcutaneous infusion?

What is the best type of CSCI equipment to use and why?

Indications for use

Key considerations in set-up of a CSCI

Advantages of the CSCI

Disadvantages of the CSCI

Drug conversion and drug compatibility

Specific consideration in relation to diluent

Reference

24: Emergencies: superior vena cava obstruction

Palliative care emergencies

Causes

References

25: Emergencies: haemorrhage

Haemorrhage

Causes

Signs and symptoms

Reflect

Plan: minor bleeding

Plan: haemorrhage

References

26: Emergencies: malignant spinal cord compression

Causes

Signs and Symptoms

Reflect

Plan

Nursing care concerns

References

27: Chemotherapy

Chemotherapy

Reference

28: Radiotherapy

Principles of radiotherapy

Reference

Part 3: Palliative care for all

29: Palliative care approaches in heart failure

Definitions and descriptions

Palliative care approaches to symptom management

End-of-life care

References

30: Palliative care approaches to chronic obstructive pulmonary disease

Definitions and descriptors

Clinical presentation

Palliative approaches to symptom management

End-of-life care

References

31: Palliative care approaches in motor neurone disease

Aetiology of motor neurone disease

Diagnosis

Treatment

Prognosis

Care and management of symptoms

Multi-disciplinary care

References

32: Palliative care approaches for people receiving dialysis

Context

Cause for concern register

Withdrawal of dialysis

Patients who wish to stop dialysis

Trajectory of decline following withdrawal of dialysis

Symptom management

Care coordination

Psychosocial and spiritual support

References

33: Palliative care approaches for people with progressive kidney disease: a non-dialytic pathway

Context

The stages of renal disease

Why people choose not to start dialysis

Shared decision-making

Supporting individualised end-of-life care

Caring for carers

Terminal phase

References

34: Care of the patient following a stroke

What is a stroke?

What happens following a stroke?

Typical stroke care

Rehabilitation after stroke

Social and psychological aspects of stroke

Transient ischaemic attack

Family caregiving in stroke

Palliative and supportive care

Reference

35: Principles of palliative care for older people

Goal setting in older person care

The challenge of co-morbidity in older people with palliative care needs

Managing discussion on place of care

Caregiver burden

References

36: Care of the person with dementia

Context

What is dementia?

Social and psychological perspectives

Family caregiving in dementia

Relationship-centred care and dementia

Palliative and supportive care in dementia

References

37: Care for people with mental illness

Introduction

Serious and persistent mental illness and palliative care

Challenges for practice

Communication

References

38: Care for people with learning disabilities

People with learning disabilities

Causes of death in people with learning disabilities

Challenges in nursing people with learning disabilities at the end of their life

Key points for holistic, end-of-life assessment, care planning and delivery

References

39: Care for the homeless person

Introduction

Life expectancy

What is known about palliative care for homeless people?

Challenges for palliative care practitioners

Ways forward in terms of care and care planning

Conclusion

References

40: Care for people in prison

An increasing need for palliative care

Dying in prison

Transfer to hospital or hospice

Compassionate release

Summary

References

Part 4: Professional roles in palliative care

41: Understanding rehabilitation in palliative care

Principles of rehabilitation applied to palliative care

Assessment principles to determine rehabilitation options

Multi-disciplinary team approaches to rehabilitation

Re-evaluating rehabilitation goals towards the end of life

References

42: The social worker

Introduction

Counselling support

Family support and communication

Children and vulnerable adults

Practical supports

Care planning

Bereavement

Reference

43: The occupational therapist

Introduction

Referral to an OT

Role of the OT and the OT process in palliative care

Core interventions provided by the OT in palliative care

References

44: The physiotherapist

Location

Psychological benefits

Mobility

Exercise

Group work

Falls

Respiratory

Neurological and orthopaedic problems

Hydrotherapy

Early referral to physiotherapy

Reference

45: Complementary and supportive therapy

Introduction

Acupuncture

Music and art therapy

Mind–body techniques

Massage therapy

Regulation

Conclusions

References

46: The clinical nurse specialist

Introduction

History of the development of the role of CNS in palliative care

What the palliative care CNS does

Preparation for the role of palliative care CNS

Skills and competences

The future challenges

References

47: The advanced nurse practitioner

Introduction

The palliative care advanced nurse practitioner role

References

48: The nurse consultant

Nurse consultant

Qualifications for the job

Aspects of the job

Issues with the nurse consultant role

References

49: The chaplain

What is a chaplain?

What do chaplains do?

Professional standards

Making effective use of a chaplain

Reference

50: The medical consultant

The role and function of the medical consultant in palliative care

References

Part 5: Ethical challenges in palliative care practice

51: Stress in palliative care nursing

Introduction

Sources of stress in nursing

Reducing stress in palliative care

Strategies for managing stress and preventing burnout

Summary

References

52: Responses to euthanasia and physician-assisted suicide

Main principles

The Nursing and Midwifery Council (NMC) requirements

Reflect

How do these types of requests make you feel?

How should you respond?

References

53: Withholding and withdrawing life-sustaining care

Decision-making conflicts

Withdrawing and withholding life-sustaining care

Goals of care

Assessment

Legal position

Advance decisions to refuse treatment

Advance statements

Withholding treatments

Withdrawing life-sustaining treatment

References

54: Recognising and planning for the terminal phase of life

Diagnosing dying

Communication with patient and family

Documentation of care planning

Decisions around CPR

Reference

Part 6: Managing end-of-life care

55: Changing goals of care at the end of life

Introduction

What is end-of-life care?

Explaining the dying process to families

Reviewing medicines and choices

Excellence in nursing care involves

Syringe pumps for symptom management

56: Managing respiratory secretions at the end of life

Introduction

Definition

Cause

Prevalence

Impact

Management

Medications

Evaluation

References

57: Care at the moment of death

Introduction

Recognising and acknowledging death

Care of the body at the time of death

Issues of post-mortem or coroner inquest

Planning funerals – the role of the funeral director

58: Spiritual perspectives at the end of life

Spirituality

Assessing spiritual needs

Suffering and loss

Rituals and religious practice

Funerals

Reference

59: Bereavement

Introduction

Bereavement theories

Stage model by Parkes (1972)

Task model

The dual process model of grief

Risk factors for complicated grief

Support services

References

Index

EULA

List of Tables

Chapter 14

Table 14.1

Chapter 22

Table 22.1

Chapter 31

Table 31.1

Chapter 33

Table 33.1

Table 33.2

Chapter 36

Table 36.1

Chapter 44

Table 44.1

Chapter 47

Box 47.1

Box 47.2

Box 47.3

Chapter 50

Box 50.1

Box 50.2

Box 50.3

Box 50.4

Chapter 54

Table 54.1

Table 54.2

Table 54.3

Chapter 59

Table 59.1

List of Illustrations

Chapter 1

Figure 1.1 Terms associated with caring for dying people

Figure 1.2 Palliative care workforce

Chapter 2

Figure 2.1 Example of a genogram

Chapter 3

Figure 3.1 Tool bag of communication skills – always keep it with you

Chapter 4

Figure 4.1 Specific outcomes in the context of the Mental Capacity Act (2005)

Chapter 7

Figure 7.1 Key principles of symptom management in palliative care

Chapter 8

Figure 8.1 What is pain?

Chapter 9

Figure 9.1 Managing pain

Figure 9.2 Intensity scales

Chapter 12

Figure 12.1 The assessment and management of constipation

Chapter 14

Figure 14.1 A clinical approach to delirium

Chapter 19

Figure 19.1 The challenge of dysphagia in palliative care.

Chapter 20

Figure 20.1 Assessing and managing breathlessness

Chapter 24

Figure 24.1 Superior vena cava obstruction – nursing care concerns

Chapter 25

Figure 25.1 Preparatory conversations

Chapter 26

Figure 26.1 Common sites of pain

Chapter 27

Figure 27.1 Common side effects of systemic anti-cancer therapy (SACT)

Chapter 28

Figure 28.1 Influences on patient’s experiences of radiotherapy treatment

Chapter 29

Figure 29.1 Clinical presentation (symptoms) of heart failure

Chapter 30

Figure 30.1 Key elements of palliative care for people with chronic obstructive pulmonary disease

Chapter 31

Figure 31.1 The complex collaboration of teams involved in a patient's care

Chapter 34

Figure 34.1 The impact of stroke

Figure 34.2 The Mauk Model of post-stroke recovery

Chapter 36

Figure 36.1 Psychological needs

Figure 36.2 Relationship-centred care

Chapter 37

Figure 37.1 Relationship between serious and persistent mental illness, physical health issues and social isolation

Figure 37.2 Impact of serious and persistent mental illness on individual

Figure 37.3 Barrier to effective treatment and care

Chapter 39

Figure 39.1 The nature and challenges of homelessness

Chapter 40

Figure 40.1 Different views of palliative care for prisoners

Chapter 41

Figure 41.1 Benefits and burdens of palliative rehabilitation

Chapter 42

Figure 42.1 The many roles of the social worker

Chapter 43

Figure 43.1 The occupational therapist in palliative care – OT process and core interventions

Chapter 44

Fig 44.1 Role of the physiotherapist in palliative care

Figure 44.2 Mobility as a spectrum

Chapter 46

Figure 46.1 Preparation for the role of palliative care clinical nurse specialist

Chapter 48

Figure 48.1 A personal example of a nurse consultant‚s career path

Chapter 51

Figure 51.1 Managing stress in palliative care nursing

Figure 51.2 Six areas of work-life

Chapter 52

Figure 52.1 Understanding the terms

Figure 52.2 What to do when faced with requests to participate in assisted suicide

Chapter 53

Figure 53.1 What types of care interventions might this involve?

Figure 53.2 Questions to be asked

Chapter 54

Figure 54.1 Functional decline before death

Chapter 55

Figure 55.1 End-of-life nursing care

Figure 55.2 T34™ Ambulatory syringe pump

Chapter 57

Figure 57.1 Planning for care at end of life

Guide

Cover

Table of Contents

Preface

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Contributors

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

Amanda ClarkeProfessor 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 IngletonPhilip J. Larkin

Abbreviations

A&E

Accident & Emergency

ACE

Angiotensin-Converting Enzyme

ACP

Advance Care Planning

ADRT

Advance Decisions to Refuse Treatment

AHD

Advance Healthcare Directive

ALS

Amyotrophic Lateral Sclerosis

ACB

Amber Care Bundle

ANP

Advanced Nurse Practitioner

AusTOMs-OT

Australian Therapy Outcome Measures for Occupational Therapy

AV

Atrioventricular

BEDS

Brief Edinburgh Depression Scale

BMA

British Medical Association

BP

Blood Pressure

BSc

Bachelor of Science

CAM

Confusion Assessment Method

CKD

Chronic Kidney Disease

CKM

Conservative Kidney Management

CNS

Clinical Nurse Specialist

C9ORF72

Chromosome 9 Open Reading Frame 72

CO2

Carbon Dioxide

COPD

Chronic Obstructive Pulmonary Disease

COPM

Canadian Occupational Performance Measure

CPR

Cardiopulmonary Resuscitation

CSCI

Continuous Subcutaneous Infusion

CT

Scan Computed Tomography Scan

CTZ

Chemoreceptor Trigger Zone

CVA

Cerebrovascular Accident

DisDAT

Disability Distress Assessment Tool

dL

Decilitre

DN

District Nurse

DNA

Deoxyribonucleic Acid

DNACPR

Do Not Attempt Cardiopulmonary Resuscitation

DNR

Do Not Resuscitate

DSM

Diagnostic and Statistical Manual of Mental Disorders

eGFR

Estimated Glomerular Filtration Rate

EMG

Electromyography

EOL

End of Life

EPA

European Pathway Association

ESAS

Edmonton Symptom Assessment Scale

FEV

Forced Expiratory Volume

FU

Follow Up

FUS

Fused in Sarcoma

GFR

Glomerular Filtration Rate

GI

Gastrointestinal

GMC

General Medical Council

GP

General Practitioner

GSF

Gold Standards Framework

HV

Health Visitors

ICD

Internal Cardiac Defibrillators

ICD10

The International Classification of Diseases, Tenth Revision

ICP

Integrated Care Pathway

IM

Intramuscular

IQ

Intelligence Quotient

IV

Intravenous

LACDP

Leadership Alliance for the Care of Dying People

LCP

Liverpool Care Pathway

LPA

Lasting Power of Attorney

MDT

Multi-disciplinary Team

mg

Milligram

MLB

Multi-layer Bandaging

MLD

Manual Lymph Drainage

mL

Millilitre

mmol/L

Millimole per Litre

MND

Motor Neurone Disease

MPQ

McGill Pain Questionnaire

MRC

Medical Research Council

MRI

Scan Magnetic Resonance Imaging Scan

MSCC

Malignant Spinal Cord Compression

N&V

Nausea and Vomiting

NHS

National Health Service

NICE

National Institute for Health and Care Excellence

NMC

Nursing and Midwifery Council

NSAID

Non-steroidal Anti-inflammatory Drug

NTR

Nationally Transferable Role

NYHA

New York Heart Association

ONS

Office for National Statistics

OPG

Office of the Public Guardian

OT

Occupational Therapy

PAS

Physician Assisted Suicide

PCT

Primary Care Trust

PEG

Percutaneous Endoscopic Gastrostomy

PhD

Doctor of Philosophy

PHQ

Patient Health Questionnaire

PIG

Prognostic Indicator Guide

PIP

Patient Information Point

PO

By Mouth

PR

Per Rectum

PRN

As Required

PTH

Parathyroid Hormone

QoL

Quality of Life

RC

Royal College

RCN

Royal College of Nursing

RGN

Registered General Nurse

RMN

Registered Mental Nurse

RN

Registered Nurse

RRR

Rapid Response Reports

SC

Subcutaneous

SCM

State Certified Midwife

SDL

Simple Lymph Drainage

SOD1

Superoxide Dismutase 1

SP

Supporting People

SPC

Specialist Palliative Care

SPICT

Supportive and Palliative Care Indicators Tool

SPMI

Severe and Persistent Mental Illness Stat Immediately

SVCO

Superior Vena Cava Obstruction

TDP43

TDP TAR DNA-Binding Protein

TIA

Transient Ischaemic Attack

TKIs

Tyrosine Kinase Inhibitors

t-PA

Tissue Plasminogen Activator

U&E

Urea and Electrolytes

UK

United Kingdom

USA

United States of America

WHO

World Health Organization

About the companion website

Introduction

Chapters

1Setting the scene 2

Christine Ingleton

2Managing the needs of family caregivers 4

Philip J. Larkin

3Principles of effective communication 6

Alison Pilsworth and Martyn Geary

4Advance care planning 8

Christine Ingleton

5Delivering palliative approaches in different care contexts 10

Christine Ingleton

6Integrated care pathways 12

Christine Ingleton

Setting the scene

Figure 1.1Terms associated with caring for dying people

Figure 1.2Palliative care workforce

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:

provides relief from pain and other distressing symptoms;

affirms life and regards dying as a normal process;

intends neither to hasten nor postpone death;

integrates the psychological and spiritual aspects of patient care;

offers a support system to help patients live as actively as possible until death;

offers a support system to help the family cope during the patient’s illness and in their own bereavement;

uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;

will enhance quality of life and may also positively influence the course of illness; and

is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy.

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:

In-patient units – hospices

Hospital teams

Community teams

Out-patient clinics

Day care

Respite services

Bereavement support services

Alternative and complementary therapies

Counselling and psychological support

Spiritual and religious support

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

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.