Paper long abstract:

In this paper we explore the value of life as an empirical and practical problem (work) that appears when clinicians, parents, technologies and regulations set up boundaries between life and death, viable and not-viable. Based on ethnographic fieldwork in everyday clinical life in a Danish NICU we investigate the way parents as well as professionals adhere to a strong ideal of reaching consensus and practicing solidarity at the same time as they may sometimes reach very different stances on when and why to continue or withdraw life-sustaining treatment from infants at the margins of life. These processes demonstrate negotiations of responsibility, expertise, values, and welfare state priorities that are often articulated as concerns of timing: the right clinical time to decide ("the therapeutic window"), the time parents need to reach the decision ("get the parents on board"), and the need to let live or let die in worthy ways ("hurry up slowly"). Drawing upon studies that see time as constituted by the human ability to act in situations of existential loss and crisis, we suggest that the work of aligning the different temporalities at stake in life-and-death decisions, assists the participants in finding a comprehensible and 'common moral path' in the NICU, in finding a path of solidarity. We argue that the choreography of aligning temporalities in such existentially difficult decision-making situations becomes a scene to observe the strong ideals and practices of participation in the Danish welfare state, and with these the implications of an emerging participatory society.