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The Patient's Wish to DieResearch, Ethics, and Palliative Care$
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Christoph Rehmann-Sutter, Heike Gudat, and Kathrin Ohnsorge

Print publication date: 2015

Print ISBN-13: 9780198713982

Published to Oxford Scholarship Online: August 2015

DOI: 10.1093/acprof:oso/9780198713982.001.0001

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Illness narratives, meaning making, and epistemic injustice in research at the end of life

Illness narratives, meaning making, and epistemic injustice in research at the end of life

Chapter:
(p.15) Chapter 2 Illness narratives, meaning making, and epistemic injustice in research at the end of life
Source:
The Patient's Wish to Die
Author(s):

Yasmin Gunaratnam

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780198713982.003.0002

This chapter is about narrative approaches to end-of-life wishes. Following an initial discussion of last wishes and plans as affected by cultural differences, pain, and the biochemistry of advanced disease, the chapter covers three main areas. First, it provides a general flavour of the narrative dimensions of illness and care through key themes from the literature on illness narratives. Second, it turns to definitions and distinctions that have been drawn between the terms ‘narrative’ and ‘story’, focusing upon speech act theory as one approach to understanding the complex relationships between what is said, its meaning, and effects. Finally, the chapter draw upon ideas from the palliative care concept of ‘total pain’ to highlight the limits of empathic understanding in situations of suffering and the importance of recognizing how narrative research with dying people can affect the researcher.

Keywords:   illness narratives, total pain, suffering, speech act therapy, narrative research

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