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

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

Crowe A; Hurley F; Kiernan G; Kerr H; Corcoran Y; Price J; Reid J; Courtney E; McConnell T; McNeilly P; Lambert V

BMC Palliative Care

2025

Decision Making; Terminal Care; Child; Humans; Infant; Terminal Care/mt [Methods]; Terminal Care/px [Psychology]; Terminal Care/st [Standards]

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.

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

March List 2025