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Providing Compassionate
Healthcare
Challenges in policy and practice

Edited by Sue Shea,

Robin Wynyard and Christos Lionis

Routledge
Taylor & Francis Group
LONDON AND NEW YORK
First published 2014
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
711 Third Avenue, New York, NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa
business
© 2014 Sue Shea, Robin Wynyard and Christos Lionis
The right of the editors to be identified as the author of the
editorial material, and of the authors for their individual chapters,
has been asserted in accordance with sections 77 and 78 of the
Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted
or reproduced or utilised in any form or by any electronic,
mechanical, or other means, now known or hereafter invented,
including photocopying and recording, or in any information
storage or retrieval system, without permission in writing from the
publishers.
Trademark notice: Product or corporate names may be trademarks
or registered trademarks, and are used only for identification and
explanation without intent to infringe.

British Library Cataloguing-in-Publication Data

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

Library of Congress Cataloging-in-Publication Data

Providing compassionate health care : challenges in policy and
practice / edited by Sue Shea, Robin Wynyard and Christos Lionis.
p. ; cm. — (Routledge advances in health and social policy)
Includes bibliographical references.
I. Shea, Sue, editor of compilation. II. Wynyard, Robin, editor of
compilation. III. Lionis, Christos, editor of compilation. IV. Series:
Routledge advances in health and social policy. [DNLM: 1. Attitude
of Health Personnel. 2. Empathy. 3. Organizational Culture. 4.
Professional-Patient Relations. W 21.5]
R697.A4
610.73c7069—dc23
2013050069

ISBN: 978-0-415-70496-0 (hbk)

ISBN: 978-1-315-89018-0 (ebk)

Typeset in Baskerville
by Swales & Willis Ltd, Exeter, Devon, UK
Contents

List of figures x
List of tables xii
Contributors xiii
Foreword xix
Preface xxiv
Acknowledgements xxv

Introduction 1
S U E S H E A, RO B IN WY N Y ARD AN D C HRIS TOS LI ONI S

PART I
Introducing the concept of compassion 7

1 Understanding compassion: the tangled roots

of compassion: historical origins, modern day
reflections and concerns 9
R O B I N W Y N Y A RD

2 Compassion in nursing history: attending to the

patient’s basic human needs with kindness 21
A N N BRADS H AW

PART II
Theoretical and therapeutic approaches to compassion 33

3 Empathy, stress and compassion: resonance

between the caring and the cared 35
G E O RGE P . CHROUS OS
viii Contents
4 Who cares for the carers? Keeping compassion alive
in care systems, cultures and environments:
a psychologically minded approach 40
M ARTI N S E A GER

5 Experiential learning and compassionate care:

encouraging changes in values, beliefs and behaviour 54
CRAI G BRO WN

6 Compassionate care: the theory and the reality 68

A L Y S CO L E - K IN G AN D PAUL GILB ERT

7 Compassionate journeys and end-of-life care 85

SUE SHEA

PART III
The implementation and impact of compassion
in healthcare 101

8 Encouraging a focus on compassionate care within

general practice/family medicine 103
CH RI S TO S L ION IS AN D S UE S HEA

9 Care, compassion and ideals: patient and health

care providers’ experiences 117
J I L L M AB E N

10 Compassionate Clowning: improving the quality

of life of people with dementia: a playful compassionate
approach from the Hearts & Minds ‘Elderflowers’ 139
M AGDAL E N A S C HAM B ERGER

11 Compassionate care of patients with diabetes

mellitus: a personal account 155
S T ATH I S P APAV AS ILIOU

12 The health impact of financial crisis: omens

of a Greek tragedy 167
A L E XAN D E R KEN TIKELEN IS , MARIN A KARANI KOL OS,
I R E N E P A P A N IC OLAS , S AN J AY B AS U, MARTIN MCKE E
A N D DAV I D S TUC KLER
 Contents ix
PART IV
Organizational issues 181

13 How good people can offer bad care: understanding

the wider factors in society that encourage
non-compassionate care 183
VAL E RI E I L E S

14 Current initiatives for transforming organizational

cultures and improving the patient experience 197
S U S A N F R AM P TON AN D J OAN N A GOODRIC H

15 Understanding and protecting against compassion

fatigue 214
A DE L AI S M ARKAKI

PART V
Concluding section 233

16 Can compassionate care be taught? Experiences

from the Leadership in Compassionate Care Programme,
Edinburgh Napier University and NHS Lothian 235
L I Z A DAM S O N AN D S TEPHEN S M ITH

Conclusion 252
S U E S H E A, RO B IN WY N Y ARD AN D C HRIS TOS LI ONI S

Glossary 264
Index 268
Figures

1.1 Diagram indicating communication between participants

in the compulsory therapy sessions in the film One Flew
over the Cuckoo’s Nest 18
3.1 An integrated perspective of compassion/wisdom 37
5.1 A creative group exercise: making a poster of ‘values
at work’ from cut outs from magazines 57
5.2 Sharing stories in a group. Notice the attentive listening of
some of the participants 57
5.3 The facilitator collecting feedback on a flipchart from
participants to share with the whole group 58
6.1 Adapted from P. Gilbert (2009) The Compassionate Mind,
with kind permission Constable Robinson 70
6.2 The compassion circle: key attributes of compassion
(inner ring) and the skills needed to develop them
(outer ring) 71
6.3 Compassion for the patient operating through a
further series of circles 78
8.1 European definitions of family medicine:
core competencies and characteristics 106
9.1 Idealism journey 122
9.2 Positive environments of care – (i) 123
9.3 Positive environments of care – (ii) 127
9.4 Positive environments of care – (iii) 129
10.1 Photograph of Elderflowers interaction (1) 142
10.2 Photograph of Elderflower interaction (2) 145
10.3 Photograph of Elderflowers family 149
12.1 Changes in self-reported health and access to healthcare
linked to financial crisis, population representative surveys
of Greece, 2007 compared with 2009, adjusted estimates 169
12.2 Probability of unmet medical need and age in 2007 and
2009 (lowess regression) 177
13.1 Representation of ‘swirl’ 191
 Figures xi
13.2 Differences between transactional and covenantal care 192
14.1 Comparison of U.S. Planetree Designated Hospital
Patient Satisfaction Measures Average Scores and
CMS National Average Reporting Time Period:
1 July 2011 – 30 March 2012 202
16.1 Student nurse evaluation form for Hawthorn Ward
Ellens Glen House 243
16.2 Example image 1: No nappies rather be catheterised 245
16.3 Example image 2: Aussie products 246
16.4 Example image 3: Get outside 247
16.5 Example image 4: Comfy clothes 248
Tables

9.1 What makes a good working environment 125

9.2 Intrinsic motivations 126
12.1 Comparison of EU–SILC Greece survey socio-demographics,
2007 and 2009 waves 177
12.2 Change in prevalence of key health indicators between
2007 and 2009, ages 17–81 (Odds ratios), weighted 178
12.3 Change in prevalence of unmet need for medical
examination or treatment between 2007 and 2009,
by reason for unmet need (weighted) 179
12.4 Change in prevalence of access to social benefits
between 2007 and 2009 (weighted) 180
15.1 Overview of compassion fatigue and differentiation
from related constructs 217
Contributors

Elizabeth Adamson is a Senior Lecturer within the School of Nursing,

Midwifery and Social Care at Napier University Edinburgh, Scotland.
She has 14 years of experience in education both within clinical prac-
tice and university. Her current role includes responsibility for stu-
dent experience and she plays an active part in the Leadership in
Compassionate Care Programme within the school which is a collabo-
rative project involving the University and NHS Lothian that aims to
embed compassionate care within practice and education.
Sanjay Basu is Assistant Professor of medicine and epidemiologist at the
Prevention Research Centre at Stanford University, and was previously
a Rhodes Scholar at Oxford University. He has worked with a number
of organizations including Oxfam International and is a member of the
New York Academy of Sciences. His work has featured in the Wall Street
Journal, the Boston Globe, and the New York Times.
Ann Bradshaw is Senior Lecturer in pre-registration adult nursing in
Oxford Brookes Faculty of Health and Life Sciences. She has a wide
range of nursing experience as a staff nurse in medicine, surgery, dis-
trict nursing, hospice care, oncology, palliative and end-of-life care and
as a sister and clinical lecturer in the care of older people. Before she
joined Oxford Brookes University she was Macmillan Clinical Fellow
at the Royal College of Nursing. Ann’s interests include nursing ethics
and values of compassion, educational preparation for nursing compe-
tence, nursing ethics in the curriculum, the care of people with demen-
tia, end-of-life care, nursing history, its interpretation and its relation to
nursing policy, and the use of primary and secondary data.
Craig Brown retired in 2012 after 35 years in general practice on the south
coast of England. He has always been interested in practising holistic
medicine and in particular ‘physician heal thyself’ and the spiritual
aspect of care. Over the last 13 years he has been involved in devel-
oping ‘Values in healthcare, a spiritual approach’, which is a train-
ing programme for healthcare practitioners. He was President of The
xiv Contributors
National Federation of Spiritual Healers from 1998–2001, Chairman of
the British Holistic Medical Association from 2009–2012, and a trustee
of the Janki Foundation from 2007.
George P. Chrousos is Professor and Chairman of the First Department
of Pediatrics at the University of Athens School of Medicine, Athens,
Greece, and former Chief of the Pediatric and Reproductive
Endocrinology Branch of the National Institute of Child Health and
Human Development (NICHD), National Institutes of Health (NIH),
Bethesda, Maryland. He also holds the UNESCO Chair on Adolescent
Health Care at the University of Athens and held the 2011 John
Kluge Distinguished Chair in Technology and Society at the Library
of Congress, Washington DC. He is internationally recognized for his
research on the glucocorticoid signalling system of the cell, on the dis-
eases of the hypothalamic-pituitary-adrenal axis, and on the physiologi-
cal and molecular mechanisms of stress.
Alys Cole-King is a Consultant Liaison Psychiatrist (Betsi Cadwaladr
University Health Board) and Co-Founder of the Connecting with
People Programme. She works nationally with Royal Colleges, vol-
untary bodies, academics, patient leaders and sits on the All Party
Parliamentary Group for Suicide and Self-harm Prevention. She is the
Royal College of Psychiatrists’ (RCPsych) spokesperson on suicide and
self-harm and also sits on their Patient Safety Working Group. She has
an interest in promoting compassion, patient safety and a public health
approach to suicide prevention. She has collaborated with the media to
promote a compassionate approach, led two World Suicide Prevention
Day social media campaigns and the development of the RCPsych port-
folio of compassionate self-help resources.
Susan Frampton is President of Planetree, a not-for-profit advocacy, con-
sultation and membership organization that works with a growing
international network of healthcare provider organizations across the
continuum of care to implement Planetree’s comprehensive patient-/
person-centred model of care. She has authored numerous publica-
tions, and speaks internationally on culture change, patient-centred
quality and safety, and the patient experience.
Paul Gilbert is Consultant Clinical Psychologist, at Derbyshire Health Care
NHS Foundation Trust. He has a long-standing interest in compassion-
ate care, and his research is internationally known. He developed the
‘compassionate mind approach’ as a way of integrating the scientific
study of compassion and behaviour into healthcare. He has written
several bestselling books, been extensively published, and has been
awarded the OBE for his contribution in this field.
Joanna Goodrich is currently Research and Development Manager at the
Point of Care Foundation and has a background in social science
 Contributors xv
(anthropology/sociology). She has worked with the King’s Fund’
Point of Care programme since it was set up in 2007, as researcher and
programme manager. She has worked for many years as a healthcare
researcher in the voluntary and public sectors.
Valerie Iles has been developing clinical managers and leaders for 25 years.
She has an in-depth understanding of management and leadership
theory, a breadth of practical experience of the behaviours and dynam-
ics of healthcare organizations and a wide-ranging interest in other
fields of study. She uses these skills to enable healthcare professionals
and teams to re-find enthusiasm for their roles, enhancing their ability
to interact effectively with others and encouraging them to help their
organizations act with care and compassion for patients. She is visiting
Professor at Bucks New University, and honorary Senior Lecturer at the
London School of Hygiene and Tropical Medicine and FRCGP.
Marina Karanikolos works with the Department of Public Health & Policy,
London School of Hygiene & Tropical Medicine, and is seminar leader
on Issues in Public Health. She joined the European Observatory on
Health Systems and Policies and the ECOHOST in April 2010, after
five years of work as public health information analyst for the NHS. Her
work involves health systems performance assessment, and research on
the impact of the Global Financial Crisis on population health.
Alexander Kentikelenis is a Research Associate in Sociology at Cambridge
University; previously he was a Research Fellow at Harvard University.
He has published on the social and health consequences of economic
crises and austerity policies, and his work has featured in various media
outlets, including the New York Times, Reuters, the Associated Press and
Bloomberg.
Christos Lionis is qualified in both internal medicine and social medicine
and is Professor of General Practice and Primary Care and Director of
the Clinic of Social and Family Medicine, University of Crete, Greece.
His fields of expertise comprise needs assessments, morbidity in gen-
eral practice, diagnostic studies and probability, disease determinants,
and health care services and quality in primary care. He has published
over 200 papers in international journals. He has a strong interest
in the concept of compassionate care and considers that against the
back-drop of the current economic crisis in Greece and elsewhere, the
benefits of compassion may prove even more essential. He operates a
compassionate care elective, and is involved in various activities relat-
ing to compassionate care. He is also Co-Editor in Chief of the recently
launched open access Journal of Compassionate Health Care.
Jill Maben is Director of the National Nursing Research Unit, King’s College
London. She is a registered nurse and recently experienced being part
of the direct care nursing workforce again, working on an elderly care
xvi Contributors
ward in an acute trust. Jill’s expertise lies in research in the healthcare
and nursing workforce, particularly the quality of the work environment
and nurses’ working lives and the effects of these on patient and staff
outcomes and on the patient experience. Jill is particularly interested
in links between staff well-being and patient experience, and recently
completed a national research study in the UK examining staff and
patient experience in two acute and two community trusts in England.
Adelais Markaki is Clinical Specialist in Public/Community Health Nursing
and Instructor at the Primary Health Care Department of Social
Medicine, Faculty of Medicine, University of Crete, Greece. She is a
community health nurse and a medical anthropologist who strongly
believes in bringing back the humanistic values to healthcare profes-
sions through interdisciplinary teaching and collaborative care. She is
also involved in the teaching of compassionate care elective which is
delivered to medical students at the University of Crete.
Martin McKee is Professor of European Public Health at the Department
of Public Health & Policy, London School of Hygiene & Tropical
Medicine. He qualified in medicine in Belfast, Northern Ireland,
with subsequent training in internal medicine and public health. As
Professor of European Public Health at the London School of Hygiene
and Tropical Medicine he co-directs the European Centre on Health of
Societies in Transition (ECOHOST), a WHO Collaborating Centre that
comprises the largest team of researchers working on health and health
policy in central and eastern Europe and the former Soviet Union.
Professor McKee is also research director of the European Observatory
on Health Systems and Policies.
Irene Papanicolas works with the Department of Social Policy, London
School of Economics. In the past she has worked as a researcher at the
Health Economics Research Centre at the University of Oxford and
the Department of Economics at the London Business School. She has
a PhD in Health Economics from the London School of Economics,
and MSc degrees from the University of Oxford and University College
London. Her current research interests are focused on performance
measurement, international comparisons of health systems and perfor-
mance based payment systems.
Stathis Papavasiliou is Associate Professor and head of the Department of
Endocrinology, Diabetes, and Metabolic Diseases, University of Crete
School of Medicine, Crete. His interests focus on clinical and basic
research on diabetes mellitus, thyroid disease, reproductive endocri-
nology, growth hormone replacement in adults, chaos and hormone
secretion. He believes that compassionate patient care represents the
sum total of all medical decisions and actions that take into conscious
account the distress and discomfort a patient experiences by the illness
 Contributors xvii
itself, compounded by the discomfort caused by diagnostic and thera-
peutic actions.
Magdalena Schamberger is Artistic Director, CEO and Co-Founder of
Hearts & Minds, the home of Clowndoctors and Elderflowers, based in
Edinburgh, Scotland. She has over 25 years’ experience in performing,
directing and teaching physical theatre and theatre clowning around
the world. In 2001 she launched the Hearts & Minds Elderflowers pro-
gramme, using the performing arts to improve the quality of life for
elderly people with advanced dementia in a health care environment.
Martin Seager is a Consultant Clinical Psychologist and an Adult
Psychotherapist. He is a clinician, lecturer, campaigner, broadcaster
and activist on mental health issues, and has worked in the NHS for
nearly 30 years. He had a regular mental health slot on BBC Radio
5 Live from 2007–2009. He spent over a year working in the home-
lessness field with St Mungos and also the Big Issue. He is currently
working part-time with the South West Yorkshire Partnership NHS
Foundation Trust and in private practice. He is also an honorary con-
sultant psychologist with the Central London Samaritans and a mem-
ber of the Mental Health Advisory Board of the College of Medicine.
His work on psychological-mindedness has embraced the importance
of trauma, neglect, broken attachments and failures of compassion
during the developing years as a key factor in all serious mental health
problems.
Sue Shea has a background in psychology and research into psychoso-
cial aspects of chronic disorders, and works partly from the UK, and
partly with the University of Crete. She has a strong interest in the
concept of compassionate care, and since 2010 she has been involved
in a number of initiatives in this field including organization of a sym-
posium on compassion; development of a Continuing Professional
Development course; assistance in the development and delivery of an
elective on compassionate care for medical students at the University
of Crete; various related publications; member of various compassion
related discussion forums; and involvement in research and a number
of activities in the field of compassionate care. She is also Co-Editor
in Chief of the recently launched open access Journal of Compassionate
Health Care.
Stephen Smith is a Senior Lecturer and Lead Nurse for the Leadership in
Compassionate Care Programme at Edinburgh Napier University and
NHS Lothian. Stephen has led the compassionate care programme
since 2007 supporting developments which embed compassionate care
within healthcare practice and education. Stephen has a background
in palliative care nursing and has held a variety of roles in education,
practice development, management and research.
xviii Contributors
David Stuckler is a Senior Research Leader at Oxford University; he also
currently holds research posts at London School of Hygiene & Tropical
Medicine and Chatham House. He has published over 100 peer-
reviewed scientific articles in major journals on the subjects of econom-
ics and global health, and his work has featured on the cover of the New
York Times and The Economist, as well as on BBC, NPR, and CNN, among
others.
Robin Wynyard retired after several years working for British universities
and universities abroad. He draws on his experience as a sociologist in
understanding the concept of compassion. He continues to contribute
to work in the field of compassion, and is currently visiting Research
Fellow in Education at Derby University. He has published widely in
academic journals and is co-editor of two books. His current research
interests are in cultural transmission theory and its relationship to how
popular culture deals with compassion.
Robin Youngson is an anaesthetist in New Zealand, internationally
renowned for his leadership in strengthening compassion in health-
care. He is the co-founder of Hearts in Healthcare.com, a global social
movement for health professionals, students, patient activists and all
those passionate about rehumanizing healthcare. He is an honorary
senior lecturer at Auckland University and is the author of the book
Time to Care – How to Love Your Patients and Your Job.