Getting There With Parents: interactional processes surrounding withdrawal of life-sustaining treatments in a London NICU

In the neonatal intensive care unit (NICU), healthcare professionals regularly conclude that withdrawal of life-sustaining treatments would be in their patients’ best interests. Recently, the legal disputes between parents and healthcare professionals when the former disagree with the latter’s recommendation to withdraw lifesustaining treatments have attracted much attention. This thesis seeks to examine and evaluate lesser-known informal interactional processes taking place before such disagreement reach the court. To do so, I devised grounded normative theory, a research methodology combining the insights of empirical ethics and legal pluralism with grounded theory. Based on fieldwork I conducted in and around the NICU of a London paediatric hospital, I constructed a model of the determination and operationalisation of the best interests of NICU patients in that unit. This qualitative model, entitled Getting There With Parents, highlights two main processes: ‘Justifying intensive care’ and ‘Getting there with parents’. In the first, I show how a child’s best interests are first appreciated in terms of ‘medical best interests’ and only then modulated considering ‘wider best interests’, which includes a projection of the child’s future quality of life and the preferences of parents. In the second, I examine the process through which healthcare professionals seek to persuade parents to accept recommendations to withdraw life-sustaining treatments. I then turn to ethically evaluating the grounded normative model. On one hand, using the concept of legal chronotope, I demonstrate how intertwined understandings of time and space overly narrow the scope of the determination of best interests. On the other, I relate the doubts of healthcare professionals about parents’ capacity to assess best interests to cognitive biases and I argue that even if some strategies they deploy amount to manipulating parents, they might nonetheless sometimes be justified