Noticing and responding to end-of-life suffering in the PICU: A co-designed conceptual framework for nursing practice.
Elizabeth G Broden Arciprete, Kelly N Michelson, Shelli L Feder and 15 others
PMID 42462542WHAT IT FOUND
Bereaved parents and pediatric intensive care clinicians described signs of end-of-life suffering that nurses could notice, such as burden, baseline changes, pain, restlessness, lost parent role, and disconnect, and responses like partnering, comfort, and resources.
Key findings
01Participants grouped indicators of end-of-life suffering into noticeable signs for acknowledgement and validation and responsive signs for in-the-moment nursing interventions.
02Collaborative nursing responses included partnering with parents, promoting connection and comfort, and connecting families with resources.
03Contextual factors such as uncertainty, precarity, systemic rigidity, and discontinuity sometimes facilitated and sometimes magnified nurses' ability to notice and respond to suffering.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Findings come from English-speaking, US-based participants, so they may not fit other settings. Parents who joined may have experienced or defined suffering differently than those who did not. No standardized child clinical data were collected. Focus groups mixed parents and clinicians, which may have reduced candor. The framework is a design foundation for a future nurse-led intervention, not evidence that it works.
Declared interests
No funding or conflict-of-interest declaration is reported.
The easy way to misread this
Do not read this framework as evidence that nurse-led responses reduce end-of-life suffering. It reports participants' descriptions and co-design priorities, not outcomes from a tested intervention.