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

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.

This project will provide a range of benefits-personal, social, creative/practical and professional-to the non-academic international Palliative Care community and the publics that interact with it. One of UKRI's three definitions of non-academic impact concerns 'enhancing quality of life, health and creative output'. Life:Moving Onwards aims specifically at fulfilling this through its very focused ambitions and activities. These have been developed through the PI working closely with Jed Jerwood, on the original study's research team as John Taylor Hospice's (JTH's) art psychotherapist. Jerwood's significance grew as the EOL community's interest crystallised and, thus, he is sole CoI here. The project has also been developed through the PI's close contact with the partner organisations.

Its main and immediate beneficiaries are the EOL professionals attending the conferences and connected events in Uganda, Rwanda and Sydney. Delegates to these conferences are clinical staff - doctors, nurses, wellbeing staff - and those involved in the administration of care, research and outreach, in palliative health settings. They will learn about the value of using film within these settings and how to use it ethically and, therefore, productively to further their own goals and their organisations' care agendas. These are international gatherings but the countries represented, especially in Africa, have their specific challenges in relation to both universal and palliative health care. According to head of research at APCA, Life:Moving seems likely to resonate because of their nascent but resistant relationship to the value of EOL care issues. In Sydney, the role of Life:Moving Onwards will be more geared to progressing, rather than provoking, discussion of EOL issues, the role of arts projects in health care contexts and of ethical praxis.

The second set of beneficiaries, immediate and unknown, will be members of the wider community who will come into contact with the films and research through public exhibitions and other outreach events during the trip. The exact nature of these, in Uganda and Rwanda, are yet to be fixed but under discussion are television interviews and working with arts initiatives. In Australia, the Blue Mountains fringe arts festival accompanying PHPCI will be the principal venue for impacting this audience through the films' screenings and a launch event where the PI will speak to the relationship between Arts and EOL. Further activities are being set up within Sydney itself after the conference.

The third set of beneficiaries are EOL professionals worldwide who will be exposed to the films, research and ethical guidelines via colleagues attending the international events and via the online training resources. These will be developed during the project and promoted to this more extensive network by our partner organisations, as the Letters of Support note.

A further set of stakeholders is more abstract: the nation's health and wellbeing which will benefit from the general value of the project in its support of palliative care (especially in the African context) and of death literacy, more widely. A final set is worth noting - the media, arts and film professionals who will come into contact with the films and findings, especially the ethical guidelines, during this project. In addition to our targeting of the EOL community, and its related publics, we will also take the opportunity to share the research with groups identified in the original study, encompassing diverse range of individuals and groups who harness the power of film within their work: video advocacy and rights organisations, journalists, editors and activists. Like the original study, this project responds, and caters, to the burgeoning use of film in all areas of contemporary life, and the urgency that this use be, or be more, ethically wrought. In this sense, there remains an additional abstract or unknown set of beneficiaries for it.