"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit.
Elizabeth G Broden, Pamela S Hinds, Allison V Werner-Lin and 1 others
PMID 35666188WHAT IT FOUND
Nursing pain and sedation scores showed dying PICU children were often comfortable, but parents remembered suffering, especially with cancer or long stays.
Parents' memories tracked peaks and devices, not averages.
Key findings
01Nursing assessments showed low median pain and sedation scores before death, while cancer was associated with higher peak pain.
02Longer stays were associated with more pain and pain with agitation on the day of death, and parents of these children more often described suffering.
03Parents' memories of suffering aligned more with pain peaks and device presence than with average comfort scores.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only 8 parents were interviewed, all were female, and 7 were white, so the parent accounts are narrow. Parents of children who died acutely were not represented. The quantitative part was a secondary analysis of a trial not designed to study end-of-life care, so contextual variables such as palliative care consultation and family conferences were missing. Parent interviews were retrospective, so recall bias is possible, and PICU practices may have changed since the deaths occurred.
Declared interests
No author conflicts or funding statement appear in the supplied text. The article is tagged as NIH extramural and non-U.S. government research support.
The easy way to misread this
Do not conclude that nursing pain scores missed treatable pain. The paper shows parents' memories of suffering can persist even when documented pain was low, and it did not test whether asking parents about suffering improves care.