title: The role of narrative in discussing end-of-life care: eliciting values and goals from text, context, and subtext.
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 patient-provider interaction when listeners are willing to consider the subtext and context of the story and its role in the decision-making process. As demonstrated in this study, deciphering people's stories gives us insight into their values, the mental constructs that drive their decision making, and the goals that they have for their own health care.
authors.affiliation: Department of Communication, University of Memphis, TN 38152, and Center for Health Equity Research and Promotion, Veterans Affairs Pittsburgh Healthcare System, PA, USA. aj.young@memphis.edu
authors.forename: Amanda J
authors.initials: AJ
authors.lastname: Young
authors.forename: Keri L
authors.initials: KL
authors.lastname: Rodriguez
mesh_terms: D000328:Adult; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D033262:Narration; D036301:Qualitative Research; D012380:Role; D013727:Terminal Care; D014481:United States; D014493:United States Department of Veterans Affairs