Careography: Staff Experiences of Navigating Decisions in Neonatology in Denmark

ABSTRACT

In this article, we explore medical doctors’ moral experiences of being responsible for decisions on the lives and sometimes deaths of infants in a Danish Neonatal Intensive Care Unit (NICU). Drawing on fieldwork, we investigate how clinicians navigate the tension between exercising medical authority and enabling parental involvement in decisions. Introducing the term “careography”, we call attention to how the doctors steer this tension through care for the infant, parents, colleagues, and society in ways that help them overcome moral ambivalences. We suggest that “careography” holds analytical potential to bridge anthropological theories of power, experience, and care.

KEYWORDS:

• Denmark
• care
• involvement
• life and death decisions
• moral experience
• neonatology

Acknowledgments

Our first thanks go to the clinicians and parents in the Neonatal Intensive Care Unit who welcomed us to be part of their daily work, and shared their experiences with us. We are grateful to our colleagues in the LifeWorth research group; Iben Mundbjerg Gjødsbøl, Mie Seest Dam, and Lene Koch for always stimulating discussions and for continuous comments on our argument. We also thank Rayna Rapp, Anja B. Jensen, Tine M. Gammeltoft, Lillian Prueher, and Kristina Orfali for their valuable comments on an earlier version of this article. In Denmark, ethical approval is not mandatory in interview and observation studies. According to Danish law this study has been approved by The Danish Data Protection Agency.

Funding

This research was funded by the Danish Council of Independent Research (Sapere Aude grant 12-133657, grant holder: Mette N. Svendsen).

Notes

1. This NICU differs from both national and international NICUs by including NICU as well as PICU children. Danish neonatologists are additionally trained intensive pediatrics.

2. The negotiations around Alina demonstrated how knowledge and diagnoses are constructed and situated, involving, as Annemarie Mol (2002) suggests, a multiplicity of not only bodies and diseases, but also realities, depending on who talked to them and knew them. In this case, the doctors made multiple attempts to hint at a diagnosis through the course of several months while Alina’s family kept suggesting alternative understandings of the disease and treatment paths. For further reading, see also the work of Mesman on “prognostic markers” (2008:150).

Additional information

Funding

This research was funded by the Danish Council of Independent Research (Sapere Aude grant 12-133657, grant holder: Mette N. Svendsen).

Notes on contributors

Laura E. Navne

Laura E. Navne is a PhD Fellow at Department of Public Health at University of Copenhagen. Her current research investigates practices and experiences of life’s worth in today’s Danish welfare state. Her work is part of a larger project, A Life Worth Living, led by Dr. Mette N. Svendsen.

Mette N. Svendsen

Mette N. Svendsen is associate professor and head of the Centre for Medical Science and Technology Studies at Department of Public Health, University of Copenhagen. Holding a PhD in Anthropology, she has published widely on issues related to what the human becomes in the light of new advances in medical science and technology.