Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review

Abstract

Background: Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While ‘home’ is often the preferred place of end-of-life care, the evidence around best practice for decision-making about place of end-of-life care remains inadequate. Aim: To synthesise evidence on the factors influencing decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Design: A systematic integrative literature review. The review protocol was registered in Prospero: CRD42023406800. Data sources: CINAHL, MEDLINE, EMBASE, PsycINFO, and Maternal and Infant Health were searched for studies published between 2013 and 2024. Any empirical, peer-reviewed journal articles published in English that included data pertaining to decision-making about place of end-of-life care for children (≤ 18 years) with life-limiting or life-threatening conditions were considered. Quality appraisal was conducted using the Mixed Methods Appraisal Tool. Results: Eleven eligible studies were included. Using an iterative process of constant data comparison, four themes were identified, highlighting that (i) consideration of the child, (ii) availability and suitability of end-of-life care services, (iii) parents’ capacity and control in providing care, and (iv) family and sibling well-being were factors influencing decision-making about place of end-of-life care. Conclusion: There are a complex range of factors surrounding decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Studies focused primarily on parents’ perspectives. Further research is needed to identify how to best support decisions about place of end-of-life care for families of children with life-limiting and life-threatening conditions.