Back in March 2019, a group of researchers from the UK and Japan gathered in Dumfries to launch the Mitori Project. The ESRC funded project aims to examine end of life care issues in the UK and Japan in three workstreams: ‘Culture’, ‘Practice’ and ‘Policy’.
Time flies! Six months have passed since the first workshop. In March, I joined the meeting as an external advisor for the project. In the following months, I became more involved in the project and officially joined the team in the summer to work on the ‘Policy’ workstream, as well as to coordinate communication between colleagues in the UK and Japan. To mark the launch of the Mitori film, I would like to reflect on the developments of all the three workstreams so far.
The culture workstream aims to develop cross-cultural narratives of end of life care in the UK and Japan by paying particular attention to issues related to death and isolation. The original plan developed from the first workshop was to compare the concept of ‘lonely death’ in both countries. After careful literature searches, it was found that ‘lonely death (Kodokushi)’ is a largely Japanese concept, reflecting a fast-growing social issue of older people who die alone. Whilst lonely death for older people is by no means a unique phenomenon only in Japan, it has not been a profoundly serious issue in the UK. As a result, the concept of lonely death in the British context has not well developed as such as it in Japan. In light of the comparative approach, the team agreed to include ‘social death’ as a parallel concept for the UK to further conceptual exploration of loneliness and death in both contexts. ‘Social death’, which can be traced back to Glaser and Strauss’s classic study on dying patients published in 1966. Although the concept is not only restricted to referring to social isolation and physical death, social death is compatible with lonely death to highlight isolation and marginalisation that may be involved in end of life care issues in the UK and Japan. To effectively collect and analyse literature within the limited time, a more specific subject has been developed. The provisional title is ‘loneliness and isolation of older people who live alone in Japan and the UK – Kodokushi (lonely death) and social death’. This subject aims to explore two similar concepts developed and nurtured in different contexts, furthering our understanding of loneliness and isolation of ageing population in both countries.
The practice work-stream focuses on advanced care planning (ACP) in Scotland and Japan. A large amount of work has been done to set out a clear plan for progressing investigations of ACP in the two different contexts. Given the ACP has been framed and introduced in various forms, the aim of the practice work-stream is to clarify how language and other virtual materials have been used in the two distinctive socio-cultural backgrounds. By taking a comparative approach, this study will conduct a content and discourse analysis of key ACP documents, including information brochures and fillable templates for the general public in both countries. Steps for analysis are made to: 1) count how many times a word was used, 2) consider what types of words were used, 3) categories of information included and 4) include visual aspects (photographs and colours). A thematic discourse analysis method has been chosen to interpret how words are framed and how photographic images are chosen to engage with people on decisions of their care ahead. A word map has been generated based on the collected documents to show thematic frames that would be used in further analysis. The in-depth interpretation of the key ACP documents can contribute to better understanding the ideological similarities and differences within Scotland and Japan’s governmental structures and health systems (priorities, preferences, etc.).
This work-stream takes a more public policy approach to explore issues, challenges and changes around of end of life care issues in the UK and Japan. A comprehensive summary has been synthesised to show diverse policy, legal and social developments in the UK (England & Wales, Scotland and Northern Ireland) and Japan. This summary integrates a wide range of policy reports, legal documents, guidelines and records of varied social/organisational movements from late 19th Century to 2019. To provide a clearer picture of the findings, the team has agreed to focus on three primary themes, ‘end of life care’, ‘medical aid in dying (euthanasia and assisted dying)’ and ‘after death’, by adopting a thematic analysis method. A detailed list of the primary and sub themes are shown below.
1. End of life care
1.1 Organisations, Social and Cultural Movements (non-government movements)
1.2 Policies and guidelines
1.3 Social and welfare services around end-of-life care
1.4 Cases and incidents (forgoing treatments)
2. Medical Aids in Dying
2.1 Laws and policies
2.2 Organisations, social and cultural movements (non-government movements)
2.3 Cases and incidents (euthanasia and assisted dying)
3. After Death
3.1 Post-mortem procedures
3.3 Bereavement benefits
Based on the provisional themes, further analysis will be conducted to capture different government concerns and social demands for the varied end of life care issues. In so doing, this study aims to understand and compare government and social responses to increasing and changing needs for end of life care and other related experience in the UK and Japan. The findings can enable a mutual understanding and learning between the UK and Japan on the end of life care issues.
As mentioned in the Mitori film, the second workshop in December in Japan will ‘involve the presentation of results so far and explorations how the team can continue its collaboration into the future’. In all the three workstreams, further research plans have been made to ensure smooth preparation for the upcoming workshop. In the next a couple of months, the researchers from the UK and Japan will meet frequently through the Internet continuously exchange and refine ideas for the analysis. Before the workshop, a working paper will be produced to summarise comparative investigations in each workstream. These working papers will also be presented in the workshop in Japan to seek feedback from team members. Eventually, all the working papers will be submitted for publication in relevant journals next year.