Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns

Abstract

Background A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process. Methods A qualitative approach to analysing audio-recorded conversations between neonatal team and parents. Eight critically ill neonates and a total of 16 conversations from two Swiss level III neonatal intensive care units were included. Results Three main themes were identified: the weight of uncertainty in diagnosis and prognosis, the decision-making process, and palliative care. Uncertainty was observed to impede the discussion about all options of care, including palliative care. Regarding decision-making, neonatologists oftentimes conveyed to parents that this was a shared endeavour. However, parental preferences were not ascertained in the conversations analysed. In most cases, healthcare professionals were leading the discussion and parents expressed their opinion reactively to the information or options received. Only few couples proactively participated in decision-making. The continuation of therapy was often the preferred course of action of the healthcare team and the option of palliative care was not mentioned. However, once the option for palliative care was raised, the parents’ wishes and needs regarding the end-of-life care of their child were obtained, respected, and implemented by the team. Conclusion Although shared decision-making was a familiar concept in Swiss neonatal intensive care units, parental involvement in the decision-making process illustrated a somewhat different and complex picture. Strict adherence to the concept of certainty might impede the process of decision-making, thereby not discussing palliation and missing opportunities to include parental values and preferences.

Grasping the meaning of perinatal palliative care for the multiprofessional team

“…This fact makes it difficult and can even prevent the opportunity to discuss parental values and preferences in the shared decision-making process between team and family. 27 …”

“…This fact makes it difficult and can even prevent the opportunity to discuss parental values and preferences in the shared decision-making process between team and family. 27 Thus, PC is challenging from an emotional and professional point of view and can somehow lead to divergent opinions among co-workers, and a Kwait 20 study showed that these divergences do not affect confidence when performing PC skills. It is important to emphasize that the appropriate interprofessional relationship and the establishment of a dialogue can benefit communication with NB parents in palliative care.…”