What hinders and helps in the end-of-life decision-making process for children: Parents’ and physicians’ views

Aim: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. Methods: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71 physicians. The end-of-life decisions mainly concern decisions to withhold or withdraw life-sustaining treatment. Results: The importance of taking sufficient time and exchanging clear, neutral and relevant information was main facilitators expressed by both parents and physicians. Lack of time, uncertain information and changing doctors were seen as important barriers by both parties. Most facilitators and barriers could be seen as two sides of the same coin, but not always. For example, some parents and physicians considered the fact that parents hold strong opinions as a barrier while others considered this a facilitator. Furthermore, parents and physicians showed differences. Parents especially underlined the importance of physician-related facilitators, such as a personalised approach, empathy and trust. On the contrary, physicians underlined the importance of the child's visible deterioration and parents’ awareness of the seriousness of their child's condition and prognosis as facilitators of EoLDM. Conclusions: This study gained insight into what parents and physicians experience as the main barriers and facilitators in EoLDM for neonates and children.