| The goal of this dissertation study is to broaden our understanding of the varying languages of death and dying that influence the process of decision-making by people at the end of their lives. The bioethics community has effectively advocated for a model of decision-making in clinical practice that emphasizes the discourse of autonomy. This view is based on liberal political theory and assumes a rational individual with a right and capacity for self-determination over bodily integrity. Many important protections for patients have been developed from the model and it has achieved support from organizational and legal structures. However, growing empirical and narrative evidence suggests that this language is insufficient to describe decision-making in our pluralistic American society, particularly for people in marginalized communities. Additionally, the discourse of autonomy, when used as a dominant, trumping language, does not account for the complexity and multiplicity of desires articulated and performed by people at the end of their lives.; The methodology of post-structural discourse analysis was used in this study to analyze interview data from 13 interviews with people from diverse communities who were at the end of their lives. Extensive excerpts of two of the interviews are presented with detailed analysis of the textual features, the performative aspects, and the historical and cultural contexts of the language used by the participants. The aims of the analysis were (1) to identify how people from diverse communities talk about and frame discussions decision-making about their dying process and death and (2) to demonstrate the usefulness of the post-structural discourse analysis to bioethical inquiry.; While the participants did use the discourse of autonomy, their linguistic choices were much more varied than is commonly acknowledged in the bioethics literature. In tension with the discourse of autonomy, that highlights rationality and individualism, the participants also deployed discourses that articulated values of dependency, interdependency, and relationality. Knowledge generated from this study can inform communication with people who are dying and be instrumental in guiding the development of new models of decision-making in the bioethics community to better represent the pluralistic values and needs present in American society. |
