The Cost of Dying Exhibition: public, professional and political reactions to a visual exhibition depicting experiences of poverty at the end of life.

Abstract

Public health approaches to palliative care are internationally endorsed for their potential to improve the social determinants of dying such as energy costs, transport and housing. Enhancing public understanding of inequities in end of life experiences, which exist even in economically advanced countries, is vital if the value of public health approaches are to be endorsed and invested in. Visual exhibitions have a strong tradition of raising awareness and influencing public health discourse. The UK-based Cost of Dying exhibition (April-August 2023) presented real examples of how financial hardship and deprivation intersect with end of life experience through professional portraits, photovoice imagery taken by individuals at the end of their lives, and digital stories co-produced with bereaved relatives. Three iterations of the exhibition were displayed at public venues and a health conference. Evaluation methods comprised anonymous feedback cards (n=208), panel discussions and social media reactions. Thematic analysis was used to identify themes within the feedback. The emotional resonance of the exhibition was a key theme, with attendees expressing sadness, anger, empathy and hope. Visitors found the exhibition thought-provoking and expressed that it countered existing stereotypes about what it means to experience financial hardship at the end of life. The exhibition spurred calls for change, with some attendees questioning in what capacity they could help. Individuals with expertise in end of life care reported that the imagery validated their professional experiences. In conclusion, the Cost of Dying exhibition made visible the struggles endured by individuals confronting financial hardship and material deprivation at the end of life. Such exhibitions can challenge the traditional view of dying as a swift process taking place sequestered in institutions, revealing that it often unfolds over time and individuals may continue to live at home in the community, struggling with unmet needs and unresponsive state services.