Table Of ContentJeff Round Editor
Care at the
End of Life
An Economic Perspective
Care at the End of Life
Jeff Round
Editor
Care at the End of Life
An Economic Perspective
Editor
Jeff Round
Lecturer in Health Economics
School of Social and Community Medicine
University of Bristol
Bristol
UK
ISBN 978-3-319-28266-4 ISBN 978-3-319-28267-1 (eBook)
DOI 10.1007/978-3-319-28267-1
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Pref ace
In the summer of 2010, I joined the Marie Curie Palliative Care Research Unit at
University College London, then under the directorship of Dr Louise Jones. My role
was to support the work of the unit as the in-house health economist. Before I started
in the post, I expected that I would be doing many of the things a health economist
does on a day-to-day basis when working in a clinical research setting – conducting
economic evaluations of clinical trials or building decision models to investigate the
cost-effectiveness of interventions. And though I did do these things, I quickly
learned that there was a lot that economists didn’t yet know about end of life care.
W e still know very little about how much is being spent on end of life care or
whether it is being spent to good effect. There is disagreement in the fi eld about how
best to measure outcomes for patients. There is no consensus on how (or even if) to
include in evaluations costs and benefi ts not just for the patient but also of those
close to them. There are also important questions to be answered about whether end
of life care should be considered a special case, deserving of greater resources than
other clinical areas. We must also ask whether the statistical and other methodologi-
cal tools we have available are suffi cient to answer our research questions, or do
they need further development? The list goes on. In the years since I started working
in the fi eld, things have started to change. While it remains a minority interest, end
of life and palliative care is increasingly attracting the attention of economists who
are presented with a fi eld of interesting, challenging and important questions.
To answer these questions is not simply an esoteric exercise, of interest merely
to academics but few others. The way these questions are answered is fundamental
in determining how resources are allocated across different patient groups. At the
risk of hyperbole, in extremis the way these questions are answered can sometimes
mean the difference between life and death for patients. Economists and others
responsible for such decision-making have a duty to do so in an open and transpar-
ent fashion. I hope that readers will fi nd something valuable in this book to guide
them when faced with such questions. The chapters that follow are presented
according to three broad themes, though many of the essays could fi t comfortably in
more than one of the themes.
v
vi Preface
T he fi rst theme addresses questions of methodology – what are we doing now,
and how can we do things better in future? In Chap. 2 Johnston asks if the methods
of economic evaluation are fi t for purpose when considering end of life popula-
tions, while in Chap. 3 Hunter provides guidance on how to design and evaluate
complex interventions, a common study type in this population. In Chap. 4
Bardsley provides an illustration of how we can best use evidence to inform policy
and practice when randomised or other forms of clinical trial are not possible.
Chapter 5 sees Flynn and colleagues present a novel method for preference elicita-
tion at the end of life, and in Chap. 6 Baio and Leurent discuss the problems of
dealing with missing data, with particular reference to studies involving patients at
the end of life.
The second theme focuses on whether we need different tools for measuring
outcomes and whether different decision rules should apply if the patient group is
considered end of life. First there are two chapters on the measurement of out-
comes for people at the end of life. Coast and colleagues make the case for the
capabilities approach to outcome measurement in Chap. 7 , while Sampson (Chap.
8 ) presents a challenge to the foundations on which current outcome measures and
capability instruments are based. These might be read alongside my own thoughts,
published elsewhere [1], to give an overview of the debate in this area. And irre-
spective of how we measure outcomes, we need to consider how to allocate those
resources. In Chap. 9 McCabe et al. consider whether it is appropriate to give
additional resources to patients at the end of life, while Deogaonkar et al. (Chap.
1 0 ) present the results of an empirical study examining societal preferences for
resource allocation at the end of life.
This question is continued into the fi nal section, on end of life care and society.
Here Shah (Chap. 11 ) considers the broader evidence for societal preferences for dif-
ferential allocation of resources to those at the end of life. In Chap. 12 Hulme et al.
consider the economic impacts to those who provide informal care to people at the
end of life. Attention then turns to children, where Stevens and Round (Chap. 1 3 )
discuss how best to measure outcomes when dealing with children with life- limiting
and terminal illnesses. And fi nally, Round and Llewelyn (Chap. 1 4 ) offer thoughts on
patient choice at the end of life – how do choice-driven health and social policy, as
well as societal views of illness and autonomy, infl uence the care available to people
at the end of life?
T here are of course many questions that are not addressed in this volume – the
actual cost of caring for people at the end of life, the ways in which care is produced
in different settings, the systems and structures that determine what care is available
to whom and so on. That is unavoidable – no single volume can cover everything.
However, those questions that are considered here are among the most important
facing economists and other researchers working in end of life care today – how
should we conduct research in an often vulnerable population, is there something
unique about the end of life population that requires different ways of thinking
about the way we allocate resources and how does the care we give at the end of life
Preface vii
relate to and infl uence the rest of society? My hope is that the answers and debate
presented in this book inspire much more of the same and that more economists are
encouraged to take an interest in this fascinating and vitally important clinical area.
Bristol, UK Jeff Round
February, 2016
Reference
1. Round J (2012) Is a QALY still a QALY at the end of life? Journal of Health Economics 31(3):
521–552
Acknowledgements
There are a great many people responsible for the existence of this book. First and
foremost, without the chapter authors there is no book, and so my greatest thanks go
out to each of them. I hope readers will agree with me that the chapters they have
provided are interesting, informative and challenging. I could not have asked for
more. I would also like to thank the editorial and production teams at Springer for
allowing me to publish the book in the fi rst place and for their support (and patience)
in taking the book from a germ of an idea to a reality. Though not directly involved
with this book, the charity Marie Curie are also very deserving of a thank you for
the support they have provided to me over the years. They were one of the fi rst
organisations to recognise the contribution health economists can make to improv-
ing care for people at the end of life. They have also provided funding for my PhD
fees and never asked for anything other than academically robust and honest
research in return. And fi nally I would like to thank Dr Louise Jones, whose support
over the years with my work in this area has been invaluable. Her enthusiasm and
encouragement have been vital to any achievements of mine in this fi eld.
ix
