Visually representing total pain at the end of life through photovoice

The concept of 'total pain' was conceived and utilised by Cicely Saunders, pioneer of the modern hospice movement, in the mid-1960s to highlight to doctors the multidimensional - physical, social, emotional, and spiritual - nature of suffering experienced specifically at the end of life. Photovoice is a participatory visual research method which places cameras in the hands of research participants to document aspects of their own lives - including experiences of suffering - in order to promote critical dialogue with researchers and to reach and influence decision-makers. In this article, we explore connections and overlap between the photovoice method and its outputs, and Cicely Saunders' concept of 'total pain' and her application of the concept.

We interpretively analysed photovoice data - participant-produced photographs, transcripts of interviews, and other forms of written communication - from two specific participants who took part in a four-year UK-based research study called Dying in the Margins (2019-23). The aim of the study was to uncover barriers to, and experiences of, home dying for people experiencing poverty and deprivation.

The visual and textual data highlight the multiple causes of the women's suffering, stemming from their housing, financial, material, and relational circumstances.

We identify significant alignment between the intentions and outputs of photovoice and Cicely Saunders' concept of 'total pain', which has been foundational to the historical development of palliative care. We argue that both the photovoice method and Saunders' concept aim to draw attention to causes of suffering beyond physical symptoms, so often the exclusive focus of the clinical encounter. Photovoice images zoom in on the fine-grained intimate details of people's embodied experience and their environments in much the same way that Saunders presented individual details or fragments of her patients' stories in order to give substance to, and make real, her concept of 'total pain'. Both photovoice imagery and Saunders' elaboration of 'total pain' promote emotional identification in onlookers and listeners and thereby become a rallying call for action to mitigate the social determinants of dying. We advocate for further use of photovoice in end-of-life care research, specifically in social and material contexts which are seldom given consideration by policymakers or referred to in housing, public health or end-of-life care policies.