Life:Moving Onwards: Ethical Praxis and the use of film in the International End of Life Community

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The proposed project responds to and develops significant and wide-ranging benefits for the end of life (EOL) community. These emerged during the original 'Digital Technology and Human Vulnerability: Towards an Ethical Praxis' (DTHV) research and crystallised during the ensuing multiple impact and engagement activities. Its primary objective is to extend these benefits to the international EOL community, focusing initially on Uganda, Rwanda and Australia.Part of the AHRC's 'Digital Transformations' theme, this pilot study ran from October 2016 - March 2017. Partnering with John Taylor Hospice (JTH) in Birmingham, it centred on a participatory filmmaking project (Life:Moving) in which participants from JTH co-created six short films later exhibited locally. It explored the ethical issues for filmmaking in relation to terminal illness, and produced prototypical guidelines for this filmmaking praxis. During DTHV, and since, it became clear that the importance and value of the films themselves for the EOL community matched, perhaps even exceeded, the original emphasis on both ethical praxis (still central to the films) and the digital film and media arts community as primary stakeholder. While DTHV sought to challenge public misconceptions of terminal illness and support hospice provision, it did not foresee Life:Moving's impact upon participants, audiences and EOL professionals, nor how this impact could be rolled out to new EOL audiences and contexts. Life:Moving Onwards extends, and further realises, this impact. DTHV demonstrated that film can be used effectively and ethically within a palliative care context for therapeutic and broader socio-cultural goals relating to common perceptions and prevailing assumptions about death. The co-created films challenged existing representations of, and knowledge about, the personal and clinical experience of dying, and provided both an outlet and opportunities for reflection for members of the EOL community. For the public, the films stimulate discussion of illness, grief and wellbeing, thereby promoting 'death literacy'. For participants, they can enhance quality of life and foster creative expression. For JTH, the films provided important perspectives on care and clinical experience, not picked up elsewhere in the hospice. They were subsequently shared with clinical and wellbeing staff there, at other EOL care events in the Midlands and beyond. With the burgeoning use of film within public health contexts, the findings were especially appealing to these organisations and their value for the purpose of EOL staff training and for developing 'best practice' for film use has thus been established.DTHV opened up collaborative possibilities not foreseen in the original research proposal. After it ended, the PI took Life:Moving to numerous non-academic venues in and beyond the UK and, consequently, two international partners invited the films and research to be shared at, and around, their annual events. This project brings Life:Moving to these key venues for the discussion and dissemination of African and global work in the field. The first is the African Palliative Care Association. Launched in 2003, its has a pan-African membership of 2163 institutions in over 25 countries. The PI will participate in its annual conference, in Rwanda in September 2019, and in the Cancer and Palliative Care conference in neighbouring Uganda preceding it. The second partner is Public Health and Palliative Care International, which will hold its annual conference this year in Sydney in October. In collaboration with these organisations, the films and findings will be shared with various EOL professionals and publics through papers, workshops, community and media activity. Through this, the PI and CoI will test out the the films' potential for generating debate in these different English-speaking contexts, and, subsequently, will turn them into training materials for the international EOL community.