“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Abstract

Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years.

Mixed‐methods analysis of decisional regret in parents following a child's death from cancer

“…25 Research among caregivers of adults with advanced cancer suggests that high-quality EOL care with attention to symptoms and suffering may reduce the risk of bereavement regret. 8 In pediatrics, the uniquely interdependent role of parent and child complicates assessment of EOL suffering, [34][35][36][37] requiring a collaborative approach to care. Enhancing care by strengthening support for mothers, incorporating routine parental assessment of child symptoms and suffering, and responding accordingly throughout treatment and especially at the EOL may help buffer against decisional regret.…”

Dying and Death in a Pediatric Cardiac ICU: Mixed Methods Evaluation of Multidisciplinary Staff Responses

“…Measuring what matters during EOL care for children is complex and requires incorporating multiple, at times divergent, perspectives. Recent research demonstrated that while clinicians’ documented comfort scores may indicate that patients were relatively pain-free at EOL, parents recount their child’s suffering years later (35, 36), suggesting clinicians may underestimate symptoms. Measures such as the QODD may capture the breadth of PCICU EOL experiences better than existing documentation or quality metrics.…”