Noticing and responding to end-of-life suffering in the PICU: A co-designed conceptual framework for nursing practice

Pediatric intensive care unit (PICU) nurses spend the most time with patients and families during a critical illness. However, nurses, families, and other clinicians conceptualize suffering differently, leaving some types of suffering when a child is nearing the end-of-life (EOL) unaddressed. PICU nurses are thus well-positioned but underequipped to address suffering during EOL. We aimed to 1) characterize distinctive features that indicate the presence and/or absence of suffering; and 2) identify nursing care responses that help attend to EOL suffering.

Using qualitative interpretive description, we collaborated with a purposive sample of bereaved parents and interdisciplinary health professionals, including nurses, to develop a conceptual model to better equip nurses to notice and respond to EOL suffering. The sample participated in 3 focus group discussions. Two coders generated descriptive codes from each focus group, which were revised with participants at subsequent sessions and then arranged into overarching categories. Categories and sub-categories were then co-designed into a conceptual model that was iteratively refined by participants and the research team.

Participants (N = 25) included 8 parents, 6 PICU nurses, 3 PICU physicians/advanced practice providers (APPs), 3 palliative care physicians/APPs, and 5 allied health professionals. Together with the research team, participants co-designed A Conceptual Framework to Guide Bedside Nursing Care to Address EOL Suffering, which relates four overlapping categories: 1) Noticeable Indicators for Acknowledgement and Validation, 2) Responsive Indicators for In-the-Moment Interventions, 3) Collaborative Responses, and 4) Dynamic Contextual Factors. Participants described that some indicators of suffering may be acknowledged and/or validated (such as shattered assumptive world) but not always eased. Whereas other indicators (such as physical and emotional expressions) may be responsive to in-the-moment interventions (such as facilitating opportunities for connection). Collaborative Responses included nurse strategies to address suffering such as partnering with parents, promoting connection and comfort, and connecting with resources. Dynamic Contextual Factors included external influences beyond the patient, family, and nurse, that shaped how nurses notice and respond to suffering, such as uncertainty.

This study helped operationalize indicators of and nurse-led responses to EOL suffering using a parent and clinician collaborative approach. The conceptual model can inform nurse-led, parent-partnered interventions to acknowledge and ease suffering among children nearing EOL and their families.

Some manifestations of suffering during EOL in the PICU may be readily addressable through nursing care while others may be witnessed and validated by nurses. Partnership between parents and nurses is a cornerstone of holistically addressing suffering.