Physicians’ perceptions on decision-making about withholding/withdrawing life-sustaining treatments in paediatric patients: A systematic review of qualitative evidence

Abstract

Background: With paediatric patients, deciding whether to withhold/withdraw life-sustaining treatments (LST) at the end of life is difficult and ethically sensitive. Little is understood about how and why physicians decide on withholding/withdrawing LST at the end of life in paediatric patients. In this study, we aimed to synthesise results from the literature on physicians’ perceptions about decision-making when dealing with withholding/withdrawing life-sustaining treatments in paediatric patients.Methods: We conducted a systematic review of empirical qualitative studies. Five electronic databases (Pubmed, Cinahl®, Embase®, Scopus®, Web of Science™️) were exhaustively searched in order to identify articles published in English from inception through March 17, 2021. Analysis and synthesis were guided by the Qualitative Analysis Guide of Leuven.Results: Thirty publications met our criteria and were included for analysis. Overall, we found that physicians agreed to involve parents, and to a lesser extent, children in the decision-making process about withholding/withdrawing LST. Our analysis to identify conceptual schemes revealed that physicians divided their decision-making into three stages: (1) early preparation via advance care planning, (2) information giving and receiving, and (3) arriving at the final decision. Physicians considered advocating for the best interests of the child and of the parents as their major focus. We also identified moderating factors of decision-making, such as facilitators and barriers, specifically those related to physicians and parents that influenced physicians’ decision-making.Conclusions: By focusing on stakeholders, structure of the decision-making process, ethical values, and influencing factors, our analysis showed that physicians generally agreed to share the decision-making with parents and the child, especially for adolescents. Approaches for evaluating young children’s capacity for making EOL decisions are still unclear and need to be explored further. Further research is required to better understand how to minimise the negative impact of barriers on the decision-making process (e.g., difficult involvement of children, lack of paediatric palliative care expertise, conflict with parents).