Standing at the Doorstep: Affective Encounters in Research on Death and Dying

Abstract

Hyper-sensitive moments in ethnographic fieldwork, such as family conferences whereby continuing or discontinuing treatment is discussed, or when sitting by a dying person’s bedside with family members, call into question the positionality of the researcher and research ethics. Participant observation at the end of life can evoke the sense of intruding in people’s most intimate moments. On the other hand, being present at a defining moment in life can strengthen the relationship with interlocutors precisely because this moment is shared. In my ethnographic research on the end of life of people with dementia in nursing homes in the Netherlands, the doorstep came to symbolize the emotional and methodological negotiations of proximity and distance, involvement, and detachment. How close are you allowed, how close do you dare, and how close is close enough to be empathetic? And what distance is enough to be respectful and modest? Thinking through these affective encounters, in this chapter I reflect on the ethnographic navigation of moments that require a particularly sensitive approach. I do not propagate an answer to the question of how to do research on death and dying, but aim at illustrating the affective states that come with ethnographic research.