Providing care for people at the end of life is now a pressing humanitarian issue for the 21st century. Yet it is also becoming the focus of divided opinion, conflicting professional standpoints, disagreements about the quality and significance of clinical evidence, and competing models of care delivery. Meanwhile population ageing, changing patterns of mortality and morbidity and the growing prevalence of chronic disease present growing challenges for the development of end of life care. As all these factors combine, we see problems of scale, suitability and sustainability. Against these challenges, how do we develop innovations in end of life care that are desirable, achievable and measureable? These are some of the issues to be explored by an exciting new study that I will be taking forward from early 2015.
Supported by a Wellcome Trust Senior Investigator Award in the Medical Humanities, the project is entitled: Interventions at the end of life – social, comparative and historical analysis to promote global improvement. The study seeks to generate new theoretical propositions and empirical knowledge that will lead to more sustainable and appropriate end of life interventions, across cultures and settings. It will run for four years.
The project will seek to understand how end of life interventions are developed, implemented and assessed – and with what consequences. It will take a global perspective to examine approaches of varying types and characteristics, across differing resource settings, geographies and cultures – first to build a typology of interventions and then to conduct in-depth case studies of selected examples.
It will seek to answer the following questions:
1. How has the field of end of life care emerged in the modern global context, what factors have shaped its development, to what extent is it achieving its goals and what are the barriers to progress?
2. How are specific end of life interventions formulated and delivered in different settings, what forms do they take, how can they be classified and how have particular concepts, theories and methodologies and related empirical studies shaped the design and delivery of end of life care in specific contexts?
3. How can social science, historical, comparative and theoretical perspectives frame the issue of end life interventions in ways that lead to greater efficacy and sustainability and how might alternative perspectives shape such interventions along different lines?
Why are these questions important?
Over one million deaths occur in the world every week and the number is set to grow steadily to mid-century and possibly beyond. This is leading to a strengthening field of end of life care provision that is taking various forms across different resource contexts and cultures – with resulting implications for health services and policy, clinical practice, ethics, law and public perceptions, preferences and behaviours. Care at the end of life has become a matter of urgent global importance and at the same time one of significant contestation – leading to increasingly fractured debates on how best to promote appropriate care when death is near.
These positions are yet to be fully analysed and we lack an authoritative history of end of life care in the global context. The notion that ending life with dignity, autonomy, freedom from pain and with appropriate social and medical support make up elements in a fragile consensus on what constitutes the ‘good death’. But there is much argument about the manner in which good death can be achieved in ways that are sensitive to culture and diversity, to a range of religious and non-religious values and to the varying preferences and roles of dying people and their families within both formal and informal care systems.
Understanding these issues better is the bedrock of a more rigorous appraisal of specific end of life interventions. The project is a wonderful opportunity to develop a potentially transformative area for research enquiry that can contribute simultaneously to theory, method and impact. The time is right to provide a new focus and to develop strategies and methods for research on end of life care interventions that will have a bigger intellectual impact and contribute more effectively to knowledge exchange.
This project aims to redefine the field of social and cultural research relating to end of life care. The result will be an enhanced capacity for research capable of addressing the complex challenge of how to improve end of life interventions around the world as the 21st century advances.
First, it will transform the current state of scholarship on end of life issues by bringing together robust conceptual frameworks to make sense of new empirical data on end of life interventions.
Second, it will provide an essential knowledge exchange resource to shape national and global policy on end of life care and service design for future interventions that are more appropriate, sensitive and sustainable and will point the way to principles of ‘responsible innovation’ and ‘public ethics’ in end of life care.
Third, it will maintain an outward face for public engagement through a detailed website, complete with social media feeds, with key resources and outputs from the project providing a major resource to the (increasingly) interested public and helping to stimulate debate, further collaboration and the sharing of resources.
This major project is going to need substantial effort and a committed team – and to that end two postdoctoral researchers and a public engagement officer will be employed full time for the duration of the study, starting March 2015. I would be pleased to hear from anyone interested in these positions.