Professor David Clark, Director (Interdisciplinary Studies), University of Glasgow End of Life Studies Group, Dumfries Campus, Scotland, UK.
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.
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.
The place of palliative care within this is a significant, but not sole, consideration.
Most of the ‘noise’ surrounding 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 and where issues about ‘choice’ and assisted dying are being much debated. But in future decades the biggest increases in the number of deaths will occur in the low- and middle-income countries, which already account for 40 out of 56 million deaths annually.
How can we develop a more rounded sense of foresight about what is going to happen in this context and how global and local society might respond?
Our approach centers on ‘interventions’ at the end of life. We are seeing interventions broadly, as 'organized responses to end of life issues'. That involves the creation of a taxonomy of end of life interventions, with two dimensions.
First, we see interventions of varied focus – clinical actions, guidelines and protocols; the organization of specific services; formalized policies and related strategies; activities centered on advocacy; legal frameworks; cultural engagement and products; educational programs; and research itself.
At the same time the reach and jurisdiction of these interventions varies in locus – from local to global. We recognize that some end of life ‘interventions’ have become well established and may even have travelled across jurisdictions (the World Health Organization (WHO) Pain Ladder), others are rooted in specific jurisdictions (Hospice Medicare payments), whilst some are more transient or have run into obvious difficulties (the Liverpool Care Pathway). Still others are emerging at any given moment (Death Cafés, assisted dying legislation).
Our goal is to build up a detailed picture of end of life interventions, using this framework.
From the taxonomy we will develop multi-method case studies, using documentary analysis, interviews, observation and field-based methods. We hope to work on some of these in collaboration with colleagues from varied disciplines across the world. We will develop specific public engagement strategies around each case study, from public events and online discussions to interactive storytelling and documentary filmmaking.
Through our public engagement activities we aim to instigate and contribute to wider discussions about end of life issues in the global context, to raise awareness of our work, and to serve as a resource for policymakers and activists. We are excited about the responses we have been receiving and welcome contact from any interested individual or organization.
Please visit the Glasgow End of Life Studies Group website where you’ll find information about what we do, including an animated introduction to our Global Interventions at the End of Life project. From our website you can sign up to our blog and follow us on Twitter @EndofLifeStudy