Review article
Common or multiple futures for end of life care around the world?
Ideas from the ‘waiting room of history’
Shahaduz Zaman
*
, Hamilton Inbadas, Alexander Whitelaw, David Clark
School of Interdisciplinary Studies, The University of Glasgow, Crichton University Campus, Dumfries, DG1 4ZL, Scotland, UK
article info
Article history:
Received 23 March 2016
Received in revised form
4 November 2016
Accepted 7 November 2016
Available online 9 November 2016
Keywords:
End of life
Global palliative care
Global health
Quality of death
Death and dying
Waiting room of history
Post-colonial theory
abstract
Around the world there is growing interest in the manner in which care is delivered to people at the end
of life. However, there is little unanimity on what constitutes a ‘good death’ and the appropriate societal
responses to the issue of delivering culturally relevant and sustainable forms of end of life care in
different settings are not subjects of broad agreement. In this critical conceptual paper we focus on the
emerging narratives of global palliative care and offer an assessment of their implications. We relate this
to calls to improve end of life care across jurisdictions and settings, attempts to map and grade the
development of palliative care provision, and to the emergence of a widely recognised global ‘quality of
death index’. We consider an alternative approach to framing this debate, drawn from a subaltern and
post-colonial studies perspective and suggest that adopting a truly global perspective will require
acceptance of the plurality of past and present local problems and issues relating to end of life care, as
well as the plural possibilities of how they might be overcome. In that context, we would not aim to
universalise or privilege one particular global future for end of life care. Instead of homogenising end of
life interventions, we seek to be open to multiple futures for the care of the dying.
© 2016 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license
(http://creativecommons.org/licenses/by/4.0/).
1. Introduction
Global interest in end of life care is growing, for compelling
demographic and epidemiological reasons (Cohen and Deliens,
2012). The population of the world is ageing and increasing. The
number of people dying each year is set to rise. For many the
process of dying will become more extended, as life threatening
diseases transform into chronic conditions and the idea of a ‘ter-
minal’ illness may mean death within years, rather than months,
weeks or days. For others death may still come quickly e from new
infectious diseases, natural disaster, and human made catastrophes
of many kinds including war, mass migration, poverty and famine.
There are many complexities in the challenge of providing appro-
priate care at the end of life across so many unique circumstances
and contexts.
Yet how we die, what constitutes a ‘good death’ and the
appropriate societal responses to the issue of delivering culturally
relevant and sustainable forms of end of life care in different
settings are not subjects of broad agreement. Rather, they can be
seen as a ‘contested space’, where ideas, policies, practices and
professions compete to define clear solutions. Decades back Rittel
and Webber (1973) argued that in a pluralistic society there is
nothing that constitutes the undisputable public good and it makes
no sense to talk about ‘optimal solutions’. Yet the work of the
modern hospice and palliative care movement seems often to be
characterised in this light e as something self-evidently beneficial
to all, indeed something that constitutes a human right. In this
paper we examine the emerging narratives of global palliative care
and offer a critical assessment of their implications. We relate this
to calls to improve end of life care across jurisdictions and settings,
attempts to map and grade the development of palliative care
provision, and to the emergence of a widely recognised global
‘quality of death index’. We consider an alternative approach to
framing these issues, drawn from a subaltern and post-colonial
studies perspective. We conclude with some reflections on how
the ‘field’ might more realistically tackle the problem of making
appropriate end of life care available to all who seek it.
Our work is based on a close and critical reading of published
texts, papers, commentaries and reports. We also make use of a
published interview and memoir in which two palliative care ac-
tivists set out their experiences and views.
* Corresponding author.
E-mail addresses: shahaduz.zaman@glasgow.ac.uk, zaman567@yahoo.com
(S. Zaman), hamilton.inbadas@glasgow.ac.uk (H. Inbadas), alexander.whitelaw@
glasgow.ac.uk (A. Whitelaw), david.clark.2@glasgow.ac.uk (D. Clark).
Contents lists available at ScienceDirect
Social Science & Medicine
journal homepage: www.elsevier.com/locate/socscimed
http://dx.doi.org/10.1016/j.socscimed.2016.11.012
0277-9536/© 2016 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
Social Science & Medicine 172 (2017) 72e79