End of life care in paediatric settings: UK national survey

Area of Science:

• Pediatric Palliative Care
• End-of-Life Care Research
• Healthcare Services Research

Background:

• Most children in the UK die in neonatal units (NNUs), paediatric intensive care units (PICUs), or principal treatment centres (PTCs) for children's cancer.
• Understanding end-of-life care variations across these settings is crucial for improving outcomes.
• Existing research highlights the need to examine distinct models of pediatric end-of-life care.

Purpose of the Study:

• To describe end-of-life care practices in UK NNUs, PICUs, and PTCs.
• To identify commonalities and differences in care delivery across these diverse settings.
• To explore whether distinct models of end-of-life care exist for children.

Main Methods:

• An online survey was administered to UK NNUs, PICUs, and PTCs.
• Data collected focused on service organization, delivery, and practices related to end-of-life care for the child, parents, and bereavement.
• The survey assessed core elements of end-of-life care across three domains.

Main Results:

• A 37% response rate (91 units/centres) was achieved.
• Significant variation was observed in the provision of core end-of-life care elements within and between settings.
• Principal treatment centres (PTCs) demonstrated stronger integration of palliative care expertise and multidisciplinary team representation compared to NNUs and PICUs, though bereavement care was less developed.

Conclusions:

• Children and families encounter variations in end-of-life care that significantly impact their experiences and outcomes.
• These care disparities are partly attributable to the specific healthcare setting.
• Further research (ENHANCE study) will investigate the impact of core end-of-life care elements on child and parent outcomes.