How parents derive their informed role preferences for end-of-life medical decision-making for (unborn) children in perinatology: a meta-ethnography of qualitative interview studies

BACKGROUND: End-of-life medical decision-making (EOL MDM) for (unborn) children is an integral part of perinatology. Medico-ethical guidelines for EOL MDM increasingly recommend shared decision-making (SDM) with parents. One argument for SDM is that parents prefer it. However, when SDM is distinguished from other forms of collaborative EOL MDM (cEOL MDM), parents' role preferences are not uniform. We aimed at exploring 1) how parents who have experience with cEOL MDM for their (unborn) child derive their preference for a certain role and 2) which role they prefer. METHODS: For this purpose, we used Meta-Ethnography (ME) to synthetize qualitative studies on parents' perspectives on EOL DM. RESULTS: The synthesis of 16 articles resulted in a line of argument which explains a process of preference-formation: Parents who experience a certain role allocation can evaluate it differently at different time points, and may express their experience-based, informed preferences towards future decision-making (DM) as a willingness (not) to repeat their experience. At least four different practice models can be distinguished based on parents' experiences: the tacit approval model, the recommendation acceptance model, the shared deliberation model and the preference determination model. Despite its prevalence in the theoretical literature and recommendation in several international guidelines, the shared deliberation model has only been described by parents in two studies. Parental preference-formation can be shaped through a process of dissonance reduction and a process of meaning-making. Most parents express the willingness to repeat their experience, regardless of their role in the cEOL MDM. CONCLUSION: As adopted DM models, and consequently the level of parental involvement in perinatal end-of-life decision-making (EOL-MDM), as well as parents' preferences, vary considerably across different contexts, it is questionable whether guidelines should prescribe only one DM model. Rather than aiming to give parents maximum decision-making authority, physicians should adapt their choice of model to the specific situation. While parents' expectations are one factor in deciding on the appropriate model, other factors, such as the infant's prognosis, also need to be considered.