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The Mitori Project

Professor David Clark introduces The Mitori Project, ahead of the first Full Team Workshop in Dumfries, March 2019

Objectives

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:

  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. 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.
  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. This will enable 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. This will enable us to identify key stakeholders to engage as users and co-producers of future

Research Questions

Given the nature of our project, our questions are part methodological, and part substantive. They are also closely tied to our stated objectives.

  1. 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?
  2. Which areas of end of scholarship and research are most and least developed in the two countries?
  3. 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.


Methodological Framework

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 CulturePractice 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 (CulturePractice 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.

 

Project Leaders

David Clark

Hirobumi Takenouchi

 

Administration

Amy McCreadie

Akiko Nishio

 

Researchers

Gitte Koksvik

Naomi Richards

Marian Krawczyk

Haruka Hikasa

Yoshinori Takata

Miho Tanaka

 

Collaborators

Chao Fang

Joshua Gallagher

Christine Valentine

Tony Walter

Simon Woods

Erica Borgstrom

Hara Takahashi

Shimon Tashiro

Kaoruko Aita

Hiroshi Yamazaki

Tetsuro Shimizu

 

For more information, please contact endoflifestudies@glasgow.ac.uk


Further Reading

Borgstrom, E and Walter, T. (2015) “Choice and compassion at the end of life: A critical analysis of recent English policy discourse”. Social Science & Medicine, 136-13:  95-105.

Cherny, N. (2012) “Controversies in oncologist-patient communication: a nuanced approach to autonomy, culture and paternalism.” Oncology 26(1): 37-41.

Clark, D., Inbadas, H., Colburn, B., Forrest, C., Richards, N., Whitelaw, S., Zaman, S. (2017) “Interventions at the end of life – a taxonomy for ‘overlapping consensus’” Wellcome Open Research; 2: 7.

Fukui, S. Yoshiuchi, K., Fujita, J., Sawai, M., Watanabe, M. (2011) “Japanese people’s preference for place of end-of-life care and death: a population-based nationwide survey”.  Journal of Pain Symptom Management 42(6):882-92.

Geertz, C. (1994) “Thick description: Toward an interpretive theory of culture”. In M.Martin & L. C. McIntyre (Eds.), Readings in the philosophy of social science (pp. 213-231). Cambridge, MA: MIT Press.

Hirayama, Y Otani, T Matsushima, M. (2017) “Japanese citizens’ attitude toward end-of-life care and advance directives: A qualitative study for members of medical cooperatives”.  Journal of General and Family Medicine (18)6; 378-385

Koksvik, G. (2018) “Medically Timed Death as an Enactment of Good Death: An Ethnographic Study of Three European Intensive Care Units”. 2018. OMEGA- Journal of death and dying pp. 1-14

Koksvik, G. (2015) “Dignity in Practice: Day-to-Day Life in Intensive Care Units in Western Europe”. Medical Anthropology 34(6), pp. 517-532

Krawczyk, M. and Richards, N. (2018) “The relevance of ‘total pain’ in palliative care practice and policy”. European Journal of Palliative Care, 25(3), pp. 128-130.

Locke, M. (1996) “Death in Technological Time: Locating the End of Meaningful Life”. Medical Anthropology Quarterly, New Series, 10,4: 575-600.

Long, S O. (2005) Final Days. Japanese culture and choice at the end of life. Hawaii: University of Hawaii Press.

Lynch, T., Connor, S., and Clark, D. (2013) “Mapping levels of palliative care development: a global update. Journal of Pain and Symptom Management” 45(6): 1094-1106. (

Makino, J. et al. (2014) “End-of-life considerations in the ICU in Japan: ethical and legal perspectives” J. Intensive Care.

Odachi, R., Tamaki, T., Ito, M., Okita, T., Kitamura, Y., Sobue, T. (2017) “Nurses’ Experiences of End-of-life Care in Long-term Care Hospitals in Japan: Balancing Improving the Quality of Life and Sustaining the Lives of Patients Dying at Hospitals” Asian Nursing research11: 207-215

Orpett Long, S. 2001. Negotiating the “Good Death”: Japanese Ambivalence about New Ways to Die. Ethnology, 40,4: 271-289.

Quality of Death Report. (2015) “Quality of Death Index: Ranking Palliative care across the World”. Economist Intelligence Unit, London, UK.

Richards, N. (2017) “Assisted suicide as a remedy for suffering? The end-of-life preferences of British ‘suicide tourists’”. Medical Anthropology, 36(4), pp. 348-362. (doi:10.1080/01459740.2016.1255610) (PMID:27845576)

Scranton, R. (2015) “Learning to Die in the Anthropocene”. San Francisco: City Lights.

Steffen, EM. & Klass, D. (2018) “Culture, contexts and connections: a conversation with Dennis Klass about his life and work as a bereavement scholar”, p. 208. Mortality, 23:3, 203-214.

Suh, S-Y., Morita, T., Oyama, Y., Chiu, T-Y., Koh, S. J., Hwang, S-J., Yoshie, T., Tsuneto, S. (2015) “A Cross-Cultural Study on Behaviors When Death Is Approaching in East Asian Countries. What Are the Physician-Perceived Common Beliefs and Practices?” Medicine 94 (39) 2-6.

Takenouchi, H. (2007) “Mitori no biunka no saikouchiku he mukete [Towards reconstruction of “cultures of” “mitori” in modern Japanese society]”. Shimizu, T (eds) Koureishakai wo ikiru: iruhito/Mitoru shisutemu[Living in aged society: Growing old/Caring for the dying], Toshindo Publishing, pp.95-116.

Takenouchi, H. (2015) “Where does Environmental Crisis Lead Us? : Towards Construction of Environmental Bioethics”. 4th International Conference on Management and Economics, University of Ruhuna, Sri Lanka, pp.1-15.

Valentine, C. (2009) “Continuing bonds after bereavement: a cross-cultural perspective” Bereavement Care 28:2, 6-11; Valentine, C (2013) “Identity and post-mortem relationships in the narratives of British and Japanese mourners” The Sociological Review 61: 2:383-401.

Vijay D, Zaman S and Clark D. (2018) Translation of a community palliative care intervention: Experience from West Bengal, India [version 1; referees: 2 approved, 1 approved with reservations]. Wellcome Open Res, 3:66

Walter, T. (2017) What Death Means Now: Thinking Critically About Dying and Grieving Bristol. Bristol: Policy Press.

Zaman, S., Inbadas, H., Whitelaw, A. and Clark, D. (2017) “Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’”. Social Science and Medicine, 172, pp. 72-79.