End of life care in the United Kingdom and Japan - intersections in culture, practice and policy
We are grateful to the Economic and Social Research Council, grant number ES/S013865/1 for funding under its UK-Japan Social Science and Humanities Connections scheme. This project will run from January 2019 to February 2020.
Our aim with Mitori is to forge a new research agenda for end of life care in the two countries, with a team that can take it forward, based on mutual learning and a comparative approach. Our project brings together academics using the perspectives of social science, the humanities, and ethics to examine how care of people at the end of life is currently organised in the UK and Japan. We will explore how this has been shaped by relevant cultural, demographic, professional and policy factors. Our focus will be on how two societies with ageing populations, heavy demand on health and social care systems and changing social expectations about dying, death and bereavement, are responding to the challenges they face.
In aiming to forge a new research agenda for end of life care in the UK and Japan, with a team that can take it forward, we have the following objectives:
- To identify key thematic areas of difference and commonality in end of life issues relating to Japan and the United Kingdom, through three work streams focused on: culture, practice and policy, and paying special attention to the conceptual problems of comparison. This will provide us with the knowledge to shape a new agenda for social science research on end of life care in the two countries.
- To facilitate face to face meetings between the participants and also develop an active online and digital forum for the sharing of ideas and the development of collaborative work between team members. This will enable us to build capacity for future working.
- To create an outward facing presence through a website and the active use of social media platforms, thereby building a wider community of interest around the project and establishing robust pathways to impact. This will enable us to identify key stakeholders to engage as users and co-producers of future
Given the nature of our project, our questions are part methodological, and part substantive. They are also closely tied to our stated objectives.
- How do methods, disciplinary perspectives, priority topics and the grouping and organisation of end of life research reflect shared or divergent approaches in the UK and Japan?
- Which areas of end of scholarship and research are most and least developed in the two countries?
- What are the most significant areas (e.g. hospice/palliative care; bereavement; responses to disasters; trajectories of dying; assisted dying) in which a comparative approach between Japanese and UK researchers can develop new insights and approaches?
We will seek to answer these questions through a set of collaborative working methods and by using a methodological framework that is comprehensive and wide-ranging.
In recent years, members of our team have conceptualised a comprehensive taxonomy of interventions that incorporates different types of ‘organized response to end of life issues’. We have classified the range of end of life interventions into 10 substantive categories: policy, advocacy, educational, ethico-legal, service, clinical, research, cultural, intangible, self-determined and mapped the indicative content of each.
The taxonomy will provide a guiding framework to our deliberations on aspects of Culture, Practice and Policy relating to end of life issues in Japan and the UK. We believe it opens up a debate about end of life interventions in new ways to provide protagonists, activists, policy makers, clinicians, researchers and educators with a comprehensive framework in which to place their endeavours, and more effectively to assess their efficacy. End of life issues, broadly characterised, are beginning to figure more strongly in public debate and planning, but we often lack understanding of new approaches to these matters, beyond those that sit within the paradigm of hospice, palliative care and related health and social services or those located in thanatological writings that appear of little relevance to policy and practice. We will adopt a middle path between these extremes to identify a common ground on which Japanese and UK researchers can identify new lines of enquiry that are progressive and mutually enriching between the two countries.
Guided by the taxonomy we will explore the inter-related themes of culture, practice and policy as they relate to end of life issue in the two countries. We have noted that where comparative work on end of life issues in Japan and another country has taken place, the dominant comparator in the past has been the USA. Some of this work suffers from an ethnocentric tendency to see North American orientations as the baseline against which Japanese experience and approaches are assessed. This is a deep flaw which we seek to avoid by using the 10 point taxonomy to enable a co-production of ideas and research initiatives.
Core Team and Collaborators
We are convinced that the questions we pose can only be answered though a multi-disciplinary lens. Our team therefore comprises perspectives from sociology, anthropology, philosophy and ethics, and religious studies. We make use of conceptual frameworks from post-colonial and translation studies, science and technology studies, theories of globalisation and development, feminism and death studies.
We have assembled a core team of eight people, equally divided between the UK and Japan to be responsible for the key tasks of the project and the outputs. Lead by Professor David Clark and Professor Hirobumi Takenouchi, six Early Career Researchers (ECRs) working in pairs (Japan/UK) will take the lead on the three themes (Culture, Practice and Policy). In addition, we have recruited a group of collaborators from the UK and Japan who will offer advice and commentary on the work.
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