A Clinical Careography: Steering Life-and-death Decisions Through Care

In many Euro-American societies, the ideal of patient and family involvement in clinical decision-making prevails. This ideal exists alongside the doctor's obligation and responsibility to make decisions and to be accountable for them. In this article, we explore how medical staff navigate the tension between autonomy and authority when engaging life-and-death decision-making in a Danish NICU.

The study rests on ethnographic fieldwork in a Danish NICU, involving participant observations in everyday care and decision-making work and semistructured interviews with staff and parents. All interviews were taped and transcribed. The empirical material was analyzed using thematic coding and validated in discussions with staff, parents, and social scientists.

Decisions are relational. Multiple moves, spaces, temporalities, and actors are involved in life-and-death decisions in the NICU. Therefore, the concept of medical decision-making fails to do justice to the complex efforts of moving infants in or out of life. Yet, many of these decision-making moments are staged, timed, and coordinated by medical staff. Therefore, we introduce an alternative vocabulary for talking about life-and-death decision-making in neonatology to help us attend to the moral stakes, the emotional tenor, and the fine-grained mechanisms of authority implied in such decisions around tiny infants.

We conceptualize decisions as an art of "careography." Careography is the work of aligning care for the infant, care for the parents, care for staff, care for other infants, and care for society at large, in the process of deciding whether it is best to continue or withdraw life support.