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HANDBOOK
of
PALLIATIVE
CARE
F
O
U
R
T
H
E
D
I
T
I
O
N
EDITED
BY
RICHARD
KITCHEN
,
CHRISTINA
FAULL
,
SARAH
RUSSELL
,
JO
WILSON
WlLEY
Blackwell
Handbook of Palliative Care
HANDBOOK OF
PALLIATIVE CARE
EDITED BY
Richard Kitchen
LOROS Hospice and Leicester Medical School
Christina Faull
LOROS Hospice and University of Leicester
Sarah Russell
Portsmouth Hospitals University NHS Trust
Jo Wilson
Royal Free Hospitals London NHS Foundation Trust
Fourth edition
This edition first published 2024
© 2024 John Wiley & Sons Ltd
Edition History
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Cover Image: A water-colour titled Between Night and Day (1995) © Michele Angelo Petrone, for more about the artist, see onca.org.uk/
about-us/michele-angelo-petrone/
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Set in 9/11.5pt Minion Pro by Integra Software Services Pvt. Ltd, Pondicherry, India
v
Contents
List of Contributors, vii
Foreword, x
Preface, xii
Acknowledgements, xiii
1
The Context and Principles of Palliative Care, 1
Christina Faull
2 Patient and Public Involvement in Palliative Care, 16
John Rosenberg and Kerrie Noonan
3
Equity, Diversity and Inclusion in Serious Illness, 25
Noura Rizk, William E. Rosa and Liz Grant
4
Palliative Care in the Community, 39
Matthew Doré, Catherine Millington-Sanders, Rachel Campbell, Paul Thomas,
Laura Calamos, Rachael Marchant, Carolyn Doyle, Rachel Lukwago, Karen Hodson
and Susan van Beveren
5
Hospital Palliative Care, 53
Paul W. Keeley
6
Ethics in Palliative Care Practice, 67
Derek Willis
7
Conversations and Communication, 76
Sarah Russell
8
Integrating New Perspectives: Working with Loss and Grief in Palliative Care, 89
Nikki Archer and Linda Machin
9
Recognising Deterioration, Preparing and Planning for Dying, 104
Jo Wilson and Sarah Russell
10
Pain and Its Management, 116
Richard Kitchen
https://t.me/med1917
vi Contents
11 The Management of Gastrointestinal Symptoms and Advanced Liver
Disease,
138
Andrew Chilton, Christina Faull, Wendy Prentice and Monica Compton
12
The Management of Respiratory Symptoms and Advanced Chronic
Obstructive Pulmonary Disease,
159
Frances Hakkak
13
Managing Complications of Cancer, 175
Lesley Charman, Rachael Barton and Katie Spencer
14
Palliative Care for People with Progressive Neurological Disorders, 203
David Oliver and Idris Baker
15
Palliative Care for Infants, Children and Young People, 218
Yifan Liang
16
Frailty, Dementia and Multi-Morbidity, 230
Sarah Russell
17
Palliative Care in Advanced Heart Failure, 242
Amy Gadoud
18
Palliative Care in Advanced Renal Disease, 254
Jo Wilson and Jenny Cross
19
Palliative Care for People Living with Mental Illness and People with
Intellectual Disabilities,
269
Jed Jerwood and Gemma Allen
20
Care in the Last Days of Life and after Death, 283
Nikhil Sanyal and Alistair Duncan
21
Medicines Management in Palliative Care Including Syringe Pumps, 306
Kerry Parker and Michelle Aslett
22
Spirituality in Palliative Care, 328
Margaret Holloway
23
Creating Space, Clarity and Containment in order to Sustain Staff: Managing
the Emotional Impact of Palliative Care Work,
338
Barbara Wren
24 Patient/Individual and Carer Wellbeing, 348
Tes Smith
Index,
364
https://t.me/med1917
vii
Gemma Allen
Palliative Care Inclusion and Community Partnerships
Lead, The Mary Stevens Hospice, Chair of Palliative Care
for People with Learning Disabilities Network (PCPLD)
UK
Nikki Archer, MSc nursing, BSc, RGN, AdvDip
Counselling
Counsellor and Doctorate student, former director
of supportive care
Formerly supportive care director, St Giles Hospice, UK
Michelle Aslett, BPharm (Hons), MRPharmS, CEPIP,
PgClinDip
Specialist Palliative Care Pharmacist
Marie Curie Hospice West Midlands, UK
Dr Idris Baker
Consultant in Palliative Medicine, Swansea Bay University
Health Board and Honorary Senior Clinical Lecturer
Swansea University Medical School
Tŷ Olwen, Morriston Hospital, Swansea, UK
Dr Rachael Barton, MA, MSc, DM, MRCP, FRCR
Consultant Clinical Oncologist
The Queen’s Centre for Oncology and Haematology,
Hull, UK
Dr Laura L. Calamos, PhD, MSN RN, FNP-BC, FHEA
Clinical Assistant Professor
University of Michigan School of Nursing, USA
Dr Rachel Campbell, MBChB, BSc, MRCP
Palliative Medicine Consultant
South Eastern Health and Social Care Trust, UK
Lesley Charman, RN, BN (Hons), MSc
Team Leader – Palliative Care Team
Leeds Teaching Hospitals NHS Trust, UK
Professor Andrew Chilton, MBBS, FRCP
Consultant Gastroenterologist and Endoscopist, Regional
Endoscopy Lead Midlands
Kettering General Hospital Foundation Trust, UK
Monica Compton, BSc (High Honours)
Dietetic Prescribing Advisor for Northamptonshire ICB
Northamptonshire Healthcare Foundation Trust (NHFT),
UK
Dr Jenny Cross, PhD, MRCP
Consultant Nephrologist
Royal Free London Hospitals NHS Foundation Trust, UK
Dr Matthew Doré, MBChB, BSc (Hons), MRCP, PGCME
Palliative Care Consultant
Northern Ireland Hospice and Belfast Trust, UK
Carolyn Doyle, RGN, DNSPQ, BSc, PGCE Soul Midwife
Visiting lecturer
City University, London, UK
Dr Alistair Duncan, MBChB, PGDip (Palliative Care
and Oncology)
Consultant in Palliative Medicine
Strathcarron Hospice, UK
Professor Christina Faull, BMedSci, MBBS, MD, MRCP,
PGCert Med Ed, Dip Clin Hypnosis
Consultant in Palliative Medicine
LOROS Hospice and University of Leicester, UK
List of Contributors
https://t.me/med1917
viii List of Contributors
Dr Linda Machin, PhD
Honorary Research Fellow
Keele University, UK
Dr Rachael Marchant, MBChB, MRCGP, MSc in
Palliative Medicine for Healthcare Professionals
GP, Medical Director Havens Hospices, RCGP/Marie
Curie End-of-Life Care Clinical Support Fellow
Havens Hospices, UK
Dr Catherine Millington-Sanders, MBBS, FRCGP
GP and RCGP/Marie Curie National End-of-Life Care
Clinical Champion
NHS South West, London, UK
Dr Kerrie Noonan, BA (Psych), MPsych (Clinical), PhD
MAPS
Director
Death Literacy Institute, Australia
Professor David Oliver, PhD, FRCP, FRCGP, FEAN
Honorary Professor / Retired Consultant in Palliative
Medicine
Tizard Centre, University of Kent, Canterbury, UK
Kerry Parker, MPharm (Hons), PgClinDip, PgCert
Macmillan Specialist Palliative Care Pharmacist
University Hospitals Coventry and Warwickshire NHS
Trust, UK
Dr Wendy Prentice, MBBS, MA, FRCP
Consultant in Palliative Medicine
Cicely Saunders Institute, King’s College Hospital NHS
Foundation Trust, UK
Noura Rizk, BPharm, MPH
Research Officer
Marie Curie, UK
Dr William E. Rosa, PhD, APRN, FAANP, FPCN, FAAN
Assistant Attending Behavioral Scientist & Associate
Editor, Palliative & Supportive Care and Journal of Pain &
Symptom Management;
Department of Psychiatry and Behavioral Sciences,
Memorial Sloan Kettering Cancer Center, New York, NY,
USA
Dr Amy Gadoud, MRCP, PhD
Senior Clinical Lecturer and Honorary Consultant in
Palliative Medicine
Lancaster University and Trinity Hospice, Blackpool, UK
Professor Liz Grant, MA, PhD, FRSE, FRCPE, MFPH
Assistant Principal
University of Edinburgh, UK
Professor Karen Hodson, BSc Pharm, MSc, PhD
Professor of Pharmacy Practice and Royal Pharmaceutical
Society Wales (RPS) Policy & Practice Lead
Cardiff University and RPS Wales, UK
Dr Frances Hakkak, MBBS, BSc, MSc, FRCP
Medical Director & Consultant in Palliative Medicine
Compton Care, Wolverhampton, UK
Emeritus Professor Margaret Louise Holloway, PhD, BA
(Hons), CQSW
Emeritus Professor
University of Hull, UK
Dr Jed Jerwood, PhD, MA Art Psych
Principal Art Psychotherapist for Community Services,
Birmingham and Solihull Mental Health Foundation Trust
Honorary Research Fellow, Institute of Clinical Sciences
University of Birmingham, UK
Dr Paul Keeley, MBChB, MSc, FRCP
Consultant in Palliative Medicine
Glasgow Royal Infirmary, UK
Dr Richard Kitchen, BSc, MBChB, MRCP, MA
(Med Ed), PGCert (Clin Onc)
Consultant in Palliative Medicine and Honorary Senior
Lecturer
LOROS Hospice and Leicester Medical School, UK
Dr Yifan Liang, BM, BCh, MA, DCH, FRCPCH
Consultant in Paediatric Palliative Medicine
Birmingham Women’s and Children’s NHS Foundation
Trust & Birmingham Community Healthcare NHS
Foundation Trust, UK
Rachel Lukwago, BSc
Health and Social Care Masters in Social work Masters in
Practice Education;
Principal Social Worker/Co-Chair Black Asian & Minority
Ethnic + A staff network
Kingston Adult Social Care, UK
https://t.me/med1917
List of Contributors ix
Professor Paul Thomas, MB, ChB, DCH, MRCGP, MD,
DSc (Hons)
GP and Co-Chair Community-Oriented Integration
Network (COIN)
London, UK
Revd Susan van Beveren, MA, PGD Bus (Org Chge &
Devt), CCPE, Cert Coaching
Head of Pastoral & Spiritual Support Services
Hospital NHS Foundation Trust with Hounslow &
Richmond Community Healthcare NHS Trust, UK
Professor Derek Willis, MBChB (Hons), FRCP, MRCGP,
Msc, Dip Clin Ed
Visiting Chair University of Chester and Consultant in
Palliative Medicine, UK
Dr Jo Wilson, BSc (Hons), RGN, DipHSM, BA (Hons), PhD
Macmillan Consultant Nurse Palliative Care
Royal Free Hospitals London NHS Foundation Trust, UK
Dr Barbara-Anne Wren, C. Psychol CSci, AFBPsS,
FFOM (Hons), RCPI
Consultant Psychologist
Wren Psychology Associates and Royal Free London NHS
Foundation Trust, UK
Dr John P. Rosenberg, RN BN, GDNsg (PallCare),
MPallC, PhD
Senior Lecturer
University of the Sunshine Coast, Caboolture, Australia
Dr Sarah Russell, RN DHRes, MSc, PGDip, BA (Hons)
Nurse Consultant, Trust Lead Palliative and End-of-Life Care
Portsmouth Hospitals University NHS Trust, UK
Dr Nikhil Sanyal, MBChB, MRCP, BSc (Hons)
Consultant in Palliative Medicine
George Eliot Hospital, Nuneaton, UK
Tes Smith, BA, MA, Social Work NLP Master
Practitioner & Coach
Director of Services (Caldicott Guardian & CQC registered
manager)
Saint Francis Hospice, Romford, UK
Dr Katie Spencer, MB, BChir, MA (Hons, Cantab),
FRCR, PhD
Honorary Consultant Clinical Oncologist and University
of Leeds Clinical Academic Fellow
Leeds Cancer Centre and Leeds Institute of Health
Sciences, University of Leeds, UK
https://t.me/med1917
x
‘I think that light and shadow have exactly the same duality
that exists between life and death’. (Manuel Alvarez Bravo)
Few things in life are as certain as that we are all going
to die. This means we should all have a vested interest
in developing, testing and implementing services and
training staff, in order to be able to deliver high quality
palliative and end-of-life care for all. We now live in an
ageing society where the benefits of living longer may
be outweighed by the burden of multiple comorbidities.
We are seeing many more patients living with dementia,
which rises year on year as the possibility of developing it
approximately doubles every five years after the age of sixty
five. Frailty is now recognised as a condition and brings
its own challenges for health and social care workers,
who endeavour to promote and encourage independence,
alongside living as well as possible for as long as possible.
We need to truly understand dementia and older frail
persons’ palliative needs in order to be able to deliver the
best and most appropriate care to them. We must also
remember, and cast an eye over, the informal carers of
these patients who must be supported and valued to ensure
they have the resilience to continue in their unpaid and
extremely important and necessary roles.
The conundrum of choice for patients who have life lim-
iting conditions has boundaries which clinicians need to
be mindful of, particularly prior to embarking on advance
care planning conversations. We strive for seamless and
coordinated care for our patients in the right place at the
right time by the right people but resourcing this can be
expensive and challenging and often not seen as a priority
for commissioning. We cannot guarantee timely and suit-
able care and/or interventions out of hours, which then
falls to urgent care providers who are frequently not pre-
pared or equipped to deliver it. Ambulance services are
increasingly filling gaps in community care provision
and, as generalist clinicians whose focus of training is to
provide life-saving and emergency interventions, recog-
nising dying as opposed to a condition that is potentially
reversible, and considering a palliative and end-of-life
care approach, requires a massive paradigm shift. More
emphasis is now rightly being placed on furnishing gener-
alists with palliative and end-of-life care skills. This will go
some way to improve their knowledge and confidence in
this important area of care.
Alongside this is our ageing workforce. We need to
refocus and reframe our attitudes to training our clinicians
of the future. Work is progressing in developing compe-
tencies and a framework for nursing, and medical schools
are building on their palliative care specialist training, but
we need to accolade the significance of this area of care and
pay attention to safeguarding our recruitment and reten-
tion strategies. A key area of that is providing education
and training to hone a workforce fit for purpose and one
that is able to safely care for this patient population.
As a society we welcome a public health approach to
death and dying. There is a desire to move away from the
medical model and work more collaboratively with com-
munities to improve the experience of death, dying and
bereavement. Working with, and sharing an understanding
of people’s different faiths, cultures, ethnicity and sexual
orientations, will positively influence the way we care by
demonstrating skill, empathy, compassion and sensitivity
to their specific needs.
This book, now in its 4
th
edition, and edited by Professor
Christina Faull, Dr Rich Kitchen, Dr Sarah Russell and Dr
Jo Wilson offers contemporary information and reference
material for the generalist palliative care provider, in pri-
mary and secondary care. In addition to the key chapters,
Foreword
https://t.me/med1917
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