Cicely Saunders, ‘Total Pain’ and emotional evidence at the end of life

Abstract

In this article I explore how Cicely Saunders championed the hospice movement and initiated what became palliative care by representing her emotional connections with others. She became friends (and, once or twice, fell in love) with dying patients and encouraged others to follow her example in listening to patients’ descriptions of pain. Her approach was radical at a time when she believed doctors routinely ‘deserted’ dying patients because it urged them to understand another’s embodied pain as inextricably bound up with the emotional impact of a terminal diagnosis. Saunders’ attention to how patients expressed their experience is summed up in her term ‘total pain’, which communicates how an individual’s pain is a whole overwhelming experience, not only physical but also emotional, social and spiritual. Previous research frames ‘total pain’ in terms of narrative, emphasising Saunders’ focus on listening to her patients and her use of narratives as evidence in advocating for cultural and institutional change, both of which I understand as engaging with a patient’s emotional reality. However, as Saunders’ ideals become mainstreamed as palliative care and amid calls for ‘narrative palliative care’, I use evidence from Saunders’ extensive written output alongside archival material to suggest that, just as palliative care is by its nature not a single specific intervention, ‘total pain’ should not be understood as simply narrative. Building on existing work in this journal questioning the primacy of conventional understandings of narrative in the medical humanities, I demonstrate how Saunders’ prominent use of fragments and soundbites alongside longer case narratives demonstrates the limits of narrative, particularly when someone is dying. Saunders thus offers a case study for considering the implications that questioning the primacy of narrative as emotional evidence might have for our understandings of how empathy or advocacy can function, or be cultivated, in medical settings.