Contemporary Cultural Studies in Illness, Health and Medicine

Cicely Saunders and Total PainHolism, Narrative and Silence at the End of Life

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About this book

Offers the first full-length study of Cicely Saunders's idea of ‘total pain’, providing a fresh perspective on the ambiguous place of narrative in healthcare

  • Challenges the dominance and meaning of narrative in the health humanities by exploring its relevance within an end-of-life context
  • Brings together extensive close reading of Saunders’ written output and archival sources with current theoretical approaches in the health humanities
  • Utilises a literary text-based approach to explore the discourse and vocabulary surrounding a taken-for-granted clinical term


Introduced in 1964, Cicely Saunders’s term ‘total pain’ has come to epitomise the holistic ethos of hospice and palliative care. It communicates how a dying person’s pain can be a whole overwhelming experience, not only physical but also psychological, social and spiritual. ‘Total pain’ clearly summarises Saunders’s whole-person, multidisciplinary outlook but is it a phenomenon, an intervention framework, a care approach – or something else? This book disregards the idea that Saunders’ phrase has one coherent meaning and instead explores the multiple interpretations now current in contemporary professional discourse. Using close readings of Saunders’s extensive publications, as well as archival evidence and Saunders’s own personal library, Wood situates the current usage of ‘total pain’ in wider histories of clinical holism, questions its similarity to later ideas of narrative medicine and explores how it might express the ambiguities of bearing witness to pain and vulnerability when someone is dying.

Reviews

Pain, dying, loss – bleak topics for most of us. And yet, with sharp and delicate attentiveness, Wood shows how we might adventure with ‘total pain’, as Cicely Saunders did, as a pathway back to our inescapable vulnerability and interdependence. The value of bearing witness to suffering, the extending of personhood beyond the individual, the recognition of pain in its many forms, outreach the deathbed. These are lessons that speak to the weight of genocidal and environmental catastrophes as much as to loving accompaniment as the most radical form of care.
As end-of-life care attracts increasing scrutiny, this carefully researched monograph, incorporating innovative scholarship in the medical/health humanities, offers an extensive, engaging and necessary re-appraisal of the concept of ‘total pain’.
Table of contents

Acknowledgements
Series Editor's Preface


Introduction: Pinning Down the Intangible

Part I. Holism

1. Saunders’ Use of ‘Total Pain’
2. Uses and Definitions of ‘Total Pain’ After Saunders: Many Holisms
3. Criticising ‘Total Pain’: Definite Concept or Ambiguous Term?

Part II. Narrative
4. ‘Total Pain’ and Narrative Medicine: A Sense of an Ending
5. Defending a Narrative ‘Total Pain’: Narrative vs. Narrating
6. Using Narratives to Express ‘Total Pain’

Part III. Fragments and Silence
7. Quotations and Fragments: The Limits of Narrative
8. Photographs: Looking for/at ‘Total Pain’
9. No Words: Presence and ‘Total Pain’

Conclusion: ‘Total Pain’ Now

Bibliography
Index

About the author

Joe Wood

Joe Wood is currently an Affiliate Researcher at King’s College London. He has worked in the English department at King’s and as part of the Glasgow End of Life Studies Group at the University of Glasgow. His work on Cicely Saunders and narrative at the end of life has led to collaborative work with St Christopher’s Hospice and the Royal College of Nursing.

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