Contemporary research practices in palliative medicine attempt to reduce, define, and study spirituality in end-of-life care with “scientific rigor” by isolating what counts as “spiritual.” Contrary to this move, informants from multisite hospice and bereavement spaces in this ethnographic study insist that encounters with death and dying lead to irreducible transformations that cannot be quantified or objectively defined. I argue that humans are irreducibly beings-in-relation (intimacy) rather than essentially isolated individuals (integrity), and thus “spiritual end-of-life care” necessitates attention to fluid, inextricably woven personal and relational processes. The thick social matrix of end-of-life scenarios supports the use of research methods and ethical models that acknowledge the contingent, particular, culturally embedded nature of humans as beings-in-relation. To that end, contemporary scholarship in the study of religion and feminist ethics can contribute much to debates about spirituality in end-of-life care.
This study specifically analyzes relational orientations between the living and the dead to illustrate complex transformations during mourning. Using Thomas Kasulis’s intimacy/integrity heuristic to analyze ethnographic interview texts, I argue that the death of a beloved other ruptures relational boundaries and destabilizes the mourner’s imagined relation to the self, to the deceased, and to others. Narratives attest to oscillation among a range of wildly fluctuating relational orientations, yet suggest that internal relation to the deceased persists long after the death. Informants report intense affective dynamics akin to “labor,” yet these are interpreted as continued intimacy with the deceased. Esoteric experiences are framed tentatively, yet mourners see them as comforting “true signs” of connection to the deceased. Beliefs about death are speculative, personal, eclectic, and do not rely on participation in a religious tradition, yet all informants believe in “something,” most notably a belief in loving relation. These complex and fluid features of transformed relation in end-of-life care resist attempts to be objectified, reduced, contained, or isolated as is customary in scientific investigations.
Researchers in end-of-life spiritual care must be open to the inability of the human to be objectively and statically defined, reduced, bound, or understood in isolation from others in co-emerging cultural processes. These findings suggest that some feminist models are more suited to end-of-life dilemmas than principle-based ethical models. Principle-based ethics that construct the human as an independent, autonomous, and rational being fall apart in end-of-life settings where illness often renders the dying person unable to make decisions. The ethics of care assumes relation is ontologically basic to human life, and accept dependence and interdependence as realities in end-of-life scenarios, paving the way for collaborative decision-making in circles of care.
In the final analysis, what matters more than a precise normative definition of spirituality in end-of-life settings is the ability of caregivers to enter into internal relation with the dying person as someone who is inextricably embedded in expansive relational webs. Thus, I suggest that some of the most salient issues in spiritual care involve ways to cultivate capacities for deep listening, compassion, receptivity, and response-ability in caregivers.