Moral reasoning, death and the clinic: the ethics of end-of-life decisions

Abstract

This thesis explores the ethics of end of life decision making by examining the experiences of family members who were involved with the care of a loved one with terminal cancer. There are two main objectives to this research. The first is to understand the nature of the encounters between clinical care and families, how the dying trajectory affects decision making and how family dynamics impact end of life care. The second objective is to understand the process of moral reasoning and to determine whether the nature of ethical engagement differs for end of life decision making. Each narrative case study provides a sequence of events from diagnosis to the end of the patient's life. It also includes both patient's and families' engagement with ethical problems which were encountered during the course of the trajectory, an analysis of their moral reasoning and what both patient and families considered to be a good death. Over thirty hours of interviews were conducted with ten participants. Narrative analysis is used to draw on pertinent contextual information along with an assessment of moral reasoning. This is done in two ways. First, it refers to the general rules of moral reasoning (Cohen, 2014) and applies the theories of three moral worlds (Zigon, 2007). Second, through a structural analysis of the narrative, other moral positions and indicators are revealed. Using a phenomenological approach to the data, important factors which proved to have a considerable impact on engagement with ethics included background and intention, the nature of the subject's life-world, and inter-subjectivity. In addition, both temporality and the emotions were given considerable focus to determine the way in which these elements also shaped end of life decision making. This research responded to the need for more qualitative data for end of life decisions and, by combining both medical and moral anthropology, presents an innovative approach toward understanding both decision making and morality. It reveals that both life-worlds of patients and families are altered by a terminal diagnosis consequently changing the embodied moral worlds of the decision makers. The social and perceptual transformations, the sense of liminality and the power of emotions over their embodied moral worlds changed the nature of their engagement with ethics. Indeed, background experience, inter-subjectivity and emotions sometimes had a greater influence on moral choice than outside powerful social and cultural influences which made up their moral assemblage. My concluding finding is that moral reasoning, when it comes to end of life decision making, should be understood as an exceptional space which alters the parameters of our usual engagement with ethics. The findings presented in this thesis have practical implications for medical professionals who engage with families and also for social workers and other counselors who assist families involved with end of life care. It also has implications for the study of moral anthropology by showing how death and the accompanying emotions shape our moral perspectives, decisions and worlds.