Burdened Agency and End-of-Life Ethics: A Theological Analysis

This dissertation highlights central changes that have arisen with respect to common experiences of dying in modern, Western, industrialized societies. It argues (in Chapter 1) that late-modern dying is marked by a phenomenon called “burdened agency,” which means that individuals (patients, proxies, and health care professionals) are increasingly expected to make decisions about the nature and timing of death. Moreover, such decisions are experienced as especially burdensome in a highly-reflexive social context, such as our own, in which death and dying have been largely de-institutionalized. When social and cultural norms fail to provide guidance to the dying, individuals are forced to seek meaning in an intensely private, individualistic and reflexive way. But the conditions of our modern dying—including the social isolation of the elderly and dying, social taboos about discussing death, the changing disease burden and illness trajectories, societal assumptions regarding human suffering and the use of technology, and other institutional realities—generally serve as hindrances to such meaning-making, and leave individuals in a precarious existential position as they seek to navigate the agency they so ambivalently possess.
This dissertation further argues (in Chapter 2) that the most prevalent “scripts” for dying today, including the technological dying of the Intensive Care Unit (ICU), hospice and palliative medicine, and physician-assisted suicide and euthanasia, all have shortcomings which must be acknowledged. Additionally, each script reflects moral norms that are embedded in the “modern social imaginary.” Interestingly, the practices of dying in our society reflect substantive notions about human personhood and moral agency that are characteristically modern, including the relationship of freedom and authenticity to human dignity, the affirmation of everyday life, and a commitment to avoidance of suffering. These notions seem self-evident to many today, but they also assume a mode of moral agency that is active, marked by control over nature and contingency. This view is hard to square with the eventuality of death.
The central chapters of this dissertation explore and analyze three Christian perspectives on death and dying. As the predominant practices and discourses surrounding death and dying reflect latent views of human agency and personhood, so do theological notions of death reflect particular assumptions about what it means to be human and what it means to be a moral agent. Chapters 3-5 describe the relationship between death, dying, and human agency with respect to the tradition of Roman Catholic moral theology, 20th century Swiss Protestant theologian Karl Barth, and the contemporary theological ethicist Stanly Hauerwas. Chapter 3 suggests that Roman Catholic moral theology, especially after Vatican II, encourages a “spirituality of martyrdom,” which views death under the aspect of submission, and which sees such surrender as a “witness” to divine providence and goodness. Chapter 4 presents Barth’s theology of death in light of his doctrine of creation, and claims that its salient contribution is a posture of “acceptance of creaturely finitude.” Chapter 5 suggests that these two themes converge in Hauerwas’s thought, and claims that Hauerwas’s own posture toward death and dying reflects an “ethics of dispossession.” Chapter 6 examines Christian practices of preaching, baptism, Eucharist, and contemplative prayer, arguing that each can be understood to inculcate a posture of kenotic self-giving in dying, reflecting a mode of agency that is significantly different from that of the “modern social imaginary.” This alternative mode of agency can be usefully marshalled for the generation of new ways of thinking about death and dying and new social practices at the end of life.