Live Well, Die Well: The Development of an Online, Arts-Based Palliative Care Programme in the Shadow of the COVID-19 Pandemic

Abstract

The Covid-19 crisis led to an increase in the ‘total pain’ of many terminally ill patients who faced a reduction in support, due to the temporary closure of front-line palliative day therapy services. A hospice volunteer, I instigated an online day therapy programme for patients previously attending face-to-face day therapy. Participant feedback revealed the importance of providing a space for ongoing peer support for participants’ changing sense of identity, an issue for time-limited day therapy programmes. An exploration of key concepts associated with palliative care established the multiple connections between such changing identity and arts-based approaches to living well. This article charts how I used this understanding to develop an alternative, online arts-based support programme, Live well, die well. It explores the links between ongoing mutual support, arts-based activity and the reactions to a shifting identity in patients with a life-limiting illness.

The Patients Changing Things Together (PATCHATT) ethics pack: A tool to support inclusive ethical decision-making in the development of a community-based palliative care intervention

“…As I have argued elsewhere, PPI also offers participants the opportunity to connect with others with a terminal illness, giving a sense of belonging, understanding and comfort. 43 Individuals can choose to embrace the changed identity their illness brings, through positively interacting with others in a similar position. 44 Negative impacts of PPI are also reported, however.…”