End of life care in the United Kingdom and Japan - intersections in culture, practice and policy (The Mitori Project)

Lead Research Organisation: University of Glasgow
Department Name: School of Interdisciplinary Studies

Abstract

In this project we will bring together an innovative team of academics from Japan and the UK to work together on one of the most pressing matters of our time. The Mitori Project will use the perspectives of social science, the humanities, and ethics to address a range of end of life issues that are of growing importance. We will 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 post-industrial societies - with ageing populations, heavy demand on health and social systems and changing social expectations about dying, death and bereavement - are responding to the challenges they face. We will also consider the wider discourses about the end of life that exist in the two countries, examining cultural responses, debates about assisted dying, and the representations of life and death that occur when life-threatening illness trajectories become extended, erratic and unpredictable. The Mitori Project will take a 'watching' brief on end of life issues in the two countries. It will enhance our understanding and adopt innovative approaches to shape a new agenda for research, knowledge exchange - and ultimately for social change and societal improvement.

Planned Impact

1. Those involved in advocacy work relating to end of life matters, as well as the broader spectrum of cultural activists, artists and producers who focus on end of life issues will all benefit from our comprehensive approach. We will foster dialogue with these communities of interest and practice and stimulate new forms of public engagement in our research themes.

2. Politicians and policy makers in both countries will undoubtedly see benefit in the possibilities for knowledge exchange that will result from our comparative analysis of end of life issues in Japan and the UK. there is significant scope for a 'what works' approach to end of life policy-making in the two countries and careful scrutiny of how innovation may flow from one context to the other, and back again.

3. We will also engage with prominent public figures in the arts, broadcasting, the diplomatic service, to raise awareness of the Mitori Project.

4. We will form specific links with professional organisations working in palliative and end of life care. These will include the European and Asia Pacific Palliative Care organisations, as well as national groups in the UK and in Japan.

There is significant potential for impact with all of these groups. They will benefit from the innovative focus of our work with its in-depth comparisons relating to end of life care in two contrasting, but in other ways similar, countries. Our work will reverberate with a growing zeitgeist of public concern in both countries about how and where we die. It will offer new insights into obdurate problems, based on in-depth consideration of 'how things are done' in another culture.

Through our communications strategy and active use of social media, we will make use of diverse ways to reach these communities of interest and practice. We will place a strong premium on finding simple ways to communicate about complex and sometimes taboo subjects.
 
Title Short films about the work of the project 
Description With additional funds provided by the University, Amy McCreadie from the Glasgow End of Life Studies Group, worked with filmmaker Emma Dove, to produce a series of short videos about the work of the project. As follows: 'An Introduction to The Mitori Project' https://youtu.be/KM0lskxLOis A short video by Amy McCreadie Published 20th May 2019 'The Mitori Project - Workshop 1' https://youtu.be/G-tucpmGTR8 A short film by Amy McCreadie and Emma Dove Published 27th September 2019 'The Mitori Project - Workshop 2' A short film by Amy McCreadie and Emma Dove Awaiting Publication 'The Mitori Project' A short final film by Amy McCreadie and Emma Dove Awaiting Publication 
Type Of Art Film/Video/Animation 
Year Produced 2019 
Impact Raised wider awareness of the project, linked to associated blogposts. Also fostered a sense of commitment to the project on the part of the Early Career Researchers and other collaborators. 
URL https://youtu.be/G-tucpmGTR8
 
Description We have developed a new understanding of the comparative aspects of the following issues in Japan and the UK: 1) cultural aspects of dying and in particular the phenomenon of dying alone, and its consequences 2) the practice of advance care planning in the two countries 3) similarities and differences in end of life policies and the possibilities of policy transfer. We also learned a great deal about the potential for UK-Japan collaborations in the humanities and social sciences and in particular the role of Early Career Researchers.
Exploitation Route There is now a need to build on the success of this capacity building award and for the teams of researchers involved to build substantive proposals that can be implemented in future.
Sectors Communities and Social Services/Policy,Healthcare

 
Description At the two project workshops in Scotland and Japan we have presented interim findings to wider invited audiences, who have thus been drawn into the purpose of the Mitori Project. The audiences have comprised professional and lay carers, members of the general public, those involved in creative industries, policy makers and fellow researchers and educators. The short time scale of this project and its emphasis on capacity building make it difficult to speak of tangible impacts. More palpable however is the overall 'mood' created by the project, which has drawn in many interested parties we did not envisage at the start. We feel we have created the conditions of possibility for a viable programme of collaborative research on end of life issues in the UK and Japan, and sense a real readiness to pursue this among the Early Career Researchers, as well as involved senior colleagues. Our host at the Embassy of Japan, in London, as well as conversations we have had with the Japanese Consul in Edinburgh, have reinforced a sense of the inter-cultural and diplomatic value of the project and its potential to build important bridges. This was also articulated by the Vice-Chancellor of Shizuoka University in his speech at the second project workshop. These sentiments should not be under-valued; they provide the pathway to greater awareness of and resulting impact from our work.
First Year Of Impact 2019
Sector Healthcare,Government, Democracy and Justice,Security and Diplomacy
Impact Types Cultural,Societal,Policy & public services

 
Description Professor Hirobumi Takenouchi 
Organisation Shizuoka University
Country Japan 
Sector Academic/University 
PI Contribution Professor Takenouchi and Professor Clark have been in collaboration since 2015. Professor Takenouchi is the Co-Investigator on the ESRC UK-Japan Collaboration Award, focussed on the comparative analysis of end of life issues in the two countries - The Mitori Project and also a member of the Advisory Group for Professor Clark's Wellcome Trust Investigator Award, which therefore served as a platform to launch the ESRC application, which was successful. Our aim with the Mitori Project 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 explore how this has been shaped by relevant cultural, demographic, professional and policy factors. Our focus is 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. Objectives 1. 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, providing us with the knowledge to shape a new agenda for social science research on end of life care in the two countries. 2. 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, enabling us to build capacity for future working. 3. 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, helping us to identify key stakeholders to engage as users and co-producers of future research. We have been successful in all three objectives. Key to this have been the two face to face workshops, with associated additional activities. The first of these took place at the university of Glasgow in March 2019 and has been summarised in a short film - https://youtu.be/G-tucpmGTR8 The second workshop was held at Shizuoka University in December 2019 and has also been presented in a soon to be released film. It is hard to capture fully the enthusiasm of the Early Career Researchers, who have worked together in pairs on selected topics. All members of the project team were on a steep learning curve, as we came together across the differences and distances of geography, culture, working practices and disciplinary assumptions. By the end of the second workshop, a remarkable team spirit had developed and each pair of researchers was well advanced with their plans. We are grateful to Tetsuya Kishimoto, First Secretary (Health, Labour and Welfare) at the Embassy of Japan in the UK for his interest and support for the work we are undertaking. Details of our end of project seminar at the Embassy of Japan are reported elsewhere on this form, under Engagement Activities.. We thank the Economic and Social Research Council, grant number ES/S013865/1 for funding under its UK-Japan Social Science and Humanities Connections scheme.
Collaborator Contribution Project design, co-author, and supervisor of three early career Japanese researchers involved in the Mitori Project
Impact See under Publications and Next Steps
Start Year 2015
 
Description End of grant seminar at the Embassy of Japan, London 17 March 2020 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact We planned the following event with an invited audience, to showcase the completed work of the Mitori Project, to gather feedback from key stakeolders, and to explore future directions for this porgramme of research.
The Mitori Project
End of life care in the United Kingdom and Japan - intersections in culture, practice and policy

The Embassy of Japan, 101-104 Piccadilly, Mayfair, London W1J 7JT
14:00 - 16:00pm, Tuesday 17th March 2020

Programme

Welcome
Mr Tetsuya Kishimoto, First Secretary (Health, Labour and Welfare), Embassy of Japan

What is the Mitori Project?
Professor David Clark, University of Glasgow

Two short films
Amy McCreadie, University of Glasgow

Key Topics:
End of life policies in the UK and Japan:
Dr Chao Fang, Research Associate, University of Bath
Advanced care planning in two cultures:
Dr Marian Krawcyzk, Lord Kelvin Adam Smith Research Fellow, University of Glasgow
Lonely dying:
Dr Gitte Koksvik, Research Associate, University of Glasgow
Experiencing the Mitori Project:
Joshua Gallagher, Postgraduate Research Student, University of Cambridge

A final short film
Amy McCreadie, University of Glasgow

Questions and Discussion

Please NB - the outcomes of this meeting cannot be reported as the event is taking place on 17 March, that is after the deadline date for this report.

#Final NB# - Just on the point of submission of this report, the meeting was cancelled due to concerns about Coronavirus.
Year(s) Of Engagement Activity 2020
 
Description Two Death Cafes held in Scotland and Japan 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact We held two separate Death Cafes with a Japanese theme, in the Scottish town of Thornhill (March 2019) and the Japanese city of Shizuoka (December 2019). All members of the 'Mitori Project' team took part, and we invited people with a specific interest in end of life issues in the two countries and also made free entry available for members of the local general public in each case. Discussions took place in small groups. In Scotland the 'classic' Death Café format was followed and no restrictions were placed on the topics for discussion. In Japan, participants explored two pre-determined questions: "Do family members have particular roles and responsibilities for end of life care and funeral arrangements?" and "Do the roles and responsibilities of family members differ from generation to generation and among different cultures?"
Participants expressed enthusiasm for these 'trans-cultural' death cafes. they helped the Mitori team to broaden its engagement and deepen understanding of similar and contrasting end of life issues in the two countries.
Year(s) Of Engagement Activity 2019