End of life care in PICU across the UK


End of life care in PICU across the UK


Huey R; Jennings J; Maxwell V; Richardson J



Developmental Medicine and Child Neurology




end-of-life care; pediatric intensive care unit; PICU; UK; United Kingdom


Objective: The care provided in the time surrounding the death of a child shapes long-term memories and has potential to impact on the grieving process. There are no specific guidelines for PICU staff in relation to what good care looks like at this time. We sought insight into practice across the UK to build an evidence base, improve care provided and share good practice. Method(s): A 10 question, anonymous, Likert survey was developed. The questions included: facilities available; Advance Care Plans; communication; patient transfer to home/hospice; follow-up for families; and training and support for staff. PICS Study Group disseminated the questionnaire to PICUs across the UK. Result(s): We received responses from 21/30 PICUs contacted (RR 70%). Around 60% of PICUs have a designated cubicle for end-of-life care. Only 21% have ACPs in place for lifelimited patients admitted to PICU. 79% stated relatively low uptake of hospice/home transfer for end-of-life care. 65% of units have Palliative Care Nurses coordinating care. Staff training is low, with no specific training in 30%. 55% provide a bereavement care pathway. Staff debrief only occurs in 50%. Conclusion(s): From the survey feedback, we found this was an area that all units believe can be improved. In relation to ACPs, we hope this will be more widely introduced. We know that 60% of patients admitted to PICU are life limited. These difficult conversations with family help guide management, understand wishes, and formal documentation ensures all staff are aware. Several units with higher uptake of hospice/home care found early conversations with families beneficial. Units with a dedicated palliative nurse stated this allowed more time with families. We believe this should become a standard of care. Staff training is limited in most units. For something so difficult and frequently encountered, it is vital we equip staff better.


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Huey R; Jennings J; Maxwell V; Richardson J, “End of life care in PICU across the UK,” Pediatric Palliative Care Library, accessed October 2, 2023, https://pedpalascnetlibrary.omeka.net/items/show/17139.