Abstract
OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
| Original language | English |
|---|---|
| Journal | Pediatrics |
| Volume | 142 |
| Issue number | Suppl. 1 |
| Pages (from-to) | S558-S566 |
| ISSN | 0031-4005 |
| DOIs | |
| Publication status | Published - 2018 |
Funding
Our first thanks go to the parents and clinicians in the NICU who welcomed us into their life and work. We are grateful to John Lantos for great revisions, to Lars Øystein Ursin and Janicke Syltern for final editings, and for the stimulating discussions with scholars at the seminar on newborn ethics in Trondheim 2017. Furthermore, we are grateful to our colleagues in the LifeWorth research group; Iben Mundbjerg Gjødsbøl, Mie Seest Dam, and Lene Koch for comments on our argument. Ethical approval was granted by the Danish Data Protection Agency, and since neither patient records nor biological samples have been approached, the project needed no approval from the Scientific Committee of Ethics. Ms Navne and Ms Svendsen conceptualized and designed the study together, conducted some interviews with clinicians, conducted the initial analyses, and reviewed and revised the manuscript together; the article is primarily based on an extended fieldwork conducted by Ms Navne as part of her doctoral degree; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work. FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose. FUNDING: Funded by the Danish Council of Independent Research (Sapere Aude grant 12-133657; grant holder: Dr Svendsen). POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
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