Cicely Saunders and the legacies of ‘Total Pain’

Wood, Joseph Askins (2021) Cicely Saunders and the legacies of ‘Total Pain’. PhD thesis, University of Glasgow.

Abstract

This project examines the uses and legacies of hospice pioneer Cicely Saunders’ evocative phrase 'total pain' through textual interpretations of its use. First recorded in 1964, 'total pain' communicates how a dying person’s pain is a whole overwhelming experience - not only physical but also psychological, social and spiritual. Saunders used 'total pain' to reframe the relationship between medical professionals and dying patients, relying on its intuitive sense that the patient is person too, with a present body, an existing social network and a complex past, all of which may contribute to their current pain. Although often taken to be a static concept, 'total pain' implies a case-based approach which is difficult to categorise, now variously understood as a phenomenon, an intervention framework or a care approach.

I explore Saunders own pragmatic definitions alongside subsequent competing iterations, interpretations and criticisms of the term. Situating 'total pain' in the context of wider conceptions of medical holism, I conclude it is better understood not as a concept but as a term or phrase which makes up in practical use for what it apparently lacks in analytic rigour. Responding to recent holistic interpretations which frame 'total pain' in terms of narrative, I examine how far Saunders’ emphasis on talking means 'total pain' can imply norms of narrative coherence or resolution that risk overshadowing the therapeutic importance of the affirmative relational act of narrating. Similarly, I consider how Saunders utilised narrative as emotional evidence to communicate 'total pain' in ways which represent a wider tension in the field between evidence-based data and anecdotal evidence. Using archival evidence, I argue how Saunders’ prominent use of shorter fragments, like her patient’s phrase ‘all of me is wrong’, or wordless images to communicate how complex pain often resists explanation demonstrate the limits of narrative, particularly when someone is dying. I then follow Gunaratnam in considering 'total pain' as requiring negative capability to tolerate uncertainty. Informed by Saunders’ reading in philosophy and theology, 'total pain' therefore appears to be as much about ambiguous non-narrative acts like touch, watching and ‘staying there’ which bear witness to vulnerability rather than define meaning. I end by considering how 'total pain' as I have understood it – as a useful phrase which operates at the borders of scientific fact and intuitive metaphor – might have continued relevance in contemporary hospice and palliative care practice, as well as how it might express shared experiences of death, grief and care more generally.

• Item Type: Thesis (PhD)
• Qualification Level: Doctoral
• Keywords: Cicely Saunders, total pain, holism, holistic care, narrative medicine, hospice and palliative care.
• Subjects: P Language and Literature > PR English literature; R Medicine > R Medicine (General)
• Colleges/Schools: College of Arts & Humanities > School of Critical Studies > English Literature
• Funder's Name: Arts and Humanities Research Council (AHRC)
• Supervisor's Name: Miller, Dr. Gavin and Clark, Professor David
• Date of Award: 2021
• Embargo Date: 31 May 2025
• Depositing User: Theses Team
• Unique ID: glathesis:2021-82450
• Copyright: Copyright of this thesis is held by the author.
• Date Deposited: 17 Sep 2021 10:17
• Last Modified: 21 Apr 2023 16:10
• Thesis DOI: 10.5525/gla.thesis.82450
• URI: https://theses.gla.ac.uk/id/eprint/82450