Our University of Glasgow study team, supported by a Wellcome Trust Investigator Award, is examining how responses to end of life issues are developing around the world, and with what consequences.
Death, dying and bereavement are topics that mainly sit on the margins of the humanities and social sciences. Whilst end of life care attracts growing research interest, we take the view that this is often within limited paradigms searching for linear solutions to questions of ‘efficacy’, ‘cost’ and wider ‘roll out’.
Our contention is that much work in this field has been either too remote to be relevant to policy and practice or too embedded within existing clinical and policy assumptions to offer scope for theorisation and critical thinking. We seek to explore these issues and find ways in which they might be resolved. Our goal is to provide new ways of addressing the major challenges the world is facing as the global population grows and ages and as the number of people dying each year increases dramatically.
A duty of foresight?
It is dangerous for social scientists to engage too much in prediction. But on some matters we may have a duty of developing foresight. We think of foresight about the future of dying as involving watchfulness, attentiveness, care and caution. We also see foresight as closely linked to insight.
Most of the ‘noise’ on the subject of how we die is occurring in the global north, where there is growing anxiety about how the ‘baby boomers’ are to be cared for at the end of life. But the affluent world will not be where the biggest increases in the number of deaths will occur over the coming decades. These will be in the low and middle income countries, which already account for 40 out of 56 million deaths annually.
How do we understand the implications of this, what questions should we be asking and what theoretical frameworks will help us in such an exploration? How can we develop a more rounded sense of ‘foresight’ about what is going to happen and how global and local society might respond?
Transfer or translation?
Dipesh Chakrabarty, writing from the perspective of ‘post colonial studies’ has suggested that non-European societies continue to be seen as occupying the ‘waiting room of history’ – aspiring to a future which is that of ‘Europe’. He suggests that we should stop looking at history as a developmental process which pays attention only to the transfer of modernity from Europe to the other parts of the world. Rather we need to look at the history of translation of modernity from Europe to the other places through a pluralised relationship with it. This would allow us to better understand the plurality of past and present and therefore anticipate plural futures.
We are attracted to the potential of this for exploring how the global future of end of life care might develop.
Focussing on ‘interventions’ – locus and focus
Our approach centres on ‘interventions’ at the end of life. We are seeing interventions broadly, as ‘organised responses to end of life issues’. We do not intend to limit our enquiry to those interventions which are defined by the healthcare system. Part of that strategy involves the creation of a taxonomy of end of life interventions.
We see interventions of varied and different focus – clinical actions, guidelines and protocols; the organisation of specific services; formalised policies and related strategies; activities centred on advocacy; legal frameworks; cultural engagement and products; educational programmes – and possibly (to be reflexive) research itself.
At the same time the reach and jurisdiction of these elements varies in locus – local, regional, national, international and global. We also recognise that some end of life ‘interventions’ have become well established in particular contexts, others appear more transient or have run into obvious difficulties, and still others are emergent at any given moment.
Potential case studies
From the taxonomy we propose to select purposefully a series of examples for more in-depth scrutiny. From these we will develop multi-method case studies, using documentary analysis, interviews, observation and field-based methods. We are considering case studies of differing types, and which might involve varying levels of scrutiny. We hope to work on some of these in collaboration with colleagues elsewhere. In some instances, we will develop specific strategies for public engagement around the case study – perhaps even extending to documentary or animation film making. Some specific case study examples include:
- The role of the World Health Organisation in promoting palliative care provision, 1980-2014 (policy/global) · The production, from 1983, of ‘declarations’ to support palliative and end of life care (advocacy/international)
- The work of the Neighbourhood Networks in Palliative Care in Kerala (India) and elsewhere (service/regional and international) as well as other community based services, for example in KwaZulu-Natal (South Africa) where the Integrated Community-based Home Care (ICHC) model was introduced in 1996
- The Death Café ‘movement’ (cultural/international) – this will be an ‘action’ case study as we plan not only to study the phenomenon, but to participate in it ourselves by organising Death Cafes of our own – see http://www.scotsman.com/news/beating-the-last-great-modern-taboo-1-3758620
- The rise, fall and spread of the Liverpool Care Pathway (clinical/international)
- The ‘integration’ of assisted dying with palliative care provision (service-legal/national, Belgium)
- Design and consequences of the Hospice Medicare program, 1982-present (policy-service/national, USA)
We have in mind various theoretical and disciplinary lenses through which the case studies might be developed. These include: policy studies and ‘framing’; post-colonial and subaltern studies, global health, new social movements, and responsible innovation.
Contributing to wider discussions
Our project has a strong public engagement component. We are seeking to contribute to wider discussions about end of life issues in the global context, to raise awareness of our work, to find outlets for early dissemination of our findings and to serve as a resource to policy makers and activists.
To this end our public engagement strategy has four elements: 1) communications, with a particular emphasis on social media 2) face to face events and activities 3) open learning practices using web-based and MOOC approaches 4) digital content – such as film, audio recording, animation and infographics.
A study of this kind, with this particular funder, allows further opportunities. To this end we have created the Glasgow End of Life Studies Group, which will provide a focus for other academic staff and collaborators, as well as postgraduates, visiting academics and students. It provides a space for past, on-going and new work beyond the immediate remit of the Global Interventions Project. Some of this will involve continued attention to the global history of hospice and palliative care. Another dimension will be further involvement in the ‘mapping’ work that has contributed to both the European and the Global Atlases of palliative and end of life care.
Our animation film, launched on our You Tube channel at the start of our project in March 2015, captures our continued vision.
David Clark, Hamilton Inbadas, Catriona Forrest, Shahaduz Zaman