This article charts the learning from an online, artmaking programme supporting individuals with a life-limiting illness. The programme sought to fill a gap caused by the temporary closure of face-to-face UK hospice-based day therapy programmes during the COVID-19 pandemic. Participants’ comments on this arts-based programme illustrated the sense of disrupted and diminished identity, linked to a deceased sense of agency, which terminal illness can bring. Responding to this need for increased agency led to the development of the PATCH (Palliative care patient-led change) programme. Individuals with a terminal illness will be invited to join an online collaborative group, to identify a specific issue they wish to address and to lead the change they wish to see. The PATCH group will be supported by a facilitator and a team of volunteers, whose roles will include supporting participants in planning and executing their change strategy. This article presents the conceptual underpinning for the PATCH programme, offering a tentative theory of the relationship between identity, moral purpose, agency, illness and the leadership of change for those living with a life-limiting illness. Challenging stereotypical views of palliative care patients, it explores a new community and asset-based approach to end-of-life care which supports individuals at the end of life in developing a positive self-view.
- Moral purpose
- Palliative care