The role of narrative in discussing end-of-life care: eliciting values and goals from text, context, and subtext

Health Communication
Amanda J Young, Keri L Rodriguez

Abstract

This article reports a qualitative study of elderly veterans' perceptions of and preferences for end-of-life care. At a large urban Veterans Affairs (VA) hospital, we asked 30 veterans and 30 health care providers to define 4 terms in the VA form of the advance directive: life-sustaining treatment, terminal condition, state of permanent unconsciousness, and decision-making capacity. The veterans commonly used narratives to construct meaning, and analysis showed that the resulting texts had both a subtext (the values and goals driving the narrative) and a context (life experiences that filter and shape the current interpretation). We found that all 3 components--text, subtext, and context--are crucial to understanding the central theme of an individual's narrative and the decision-making processes associated with it. In this article we examine 1 lengthy narrative using Chafe's (1994) notion of intonation units. We then present a series of short narratives to demonstrate 3 subthemes that emerged from the data: quality of life versus quantity of life, benefit of treatment versus cost of treatment, and, most common, control versus lack of control. Our goal was to demonstrate the centrality and usefulness of storytelling in the pati...Continue Reading

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Citations

Apr 15, 2010·Health Communication·Jennifer Considine, Katherine Miller
Sep 13, 2006·Health Communication·William Evans
Apr 30, 2014·Palliative & Supportive Care·Cara L Wallace
Oct 29, 2008·Qualitative Health Research·Jennifer WillyardPenny Addison
Feb 16, 2010·Qualitative Health Research·Amanda J YoungRaymond C Barfield
Nov 23, 2006·Annals of the New York Academy of Sciences·Chensheng LuRichard A Fenske
Sep 1, 2019·Journal of Pain and Symptom Management·David Shih WuScott M Wright

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