Decision-making in uncertainty: End-of-life decision-making for severely disabled children

The aim of this research project was to collect scientific knowledge about how parents of children with profound intellectual and multiple disabilities (PIMD) are involved and how they prefer to be involved, in end-of-life decision-making (EoLDM). Children with PIMD have severe intellectual disabilities (IQ<25), sensory impairments and severe motor disabilities, manifesting in the inability to move independently. End-of-life decisions (EoLDs) are decisions about the medical care and interventions surrounding the final stages of life.

This research started with a narrative review about what was already known about EoLDM for children with PIMD. In the second phase, we interviewed the parents,physicians and nurses of 14 children with PIMD for whom an EoLD was made between 2012-2014. The obtained data were subsequently also used to do are-analysis and investigate the overall facilitators and barriers of EoLDM in pediatrics between parents and physicians.

Concluding, although previous research has shown that parents prefer shared decision making (SDM) when it comes to EoLDM, which means that the physician and the parents make the decisions together, it became apparent from our research that existing models for SDM are not entirely aligned to the needs of parents of children with PIMD. This is because these parents may want to have more responsibility in making the final decision compared to parents of children with normal development who are faced with an acute illness of their child. We therefore present a revised model for SDM, more suitable for the decision-making preferences of parents of children with PIMD.