BMC Palliat Care. 2025 Nov 11;24(1):284. doi: 10.1186/s12904-025-01915-y.
ABSTRACT
BACKGROUND: Moral distress is the experience of knowing what ethically right action to take, but being unable to act accordingly, due to external factors. It is an experience common to providers working in the neonatal intensive care unit (NICU) where care for infants, often born at the edges of viability or with other life-limiting diagnoses, includes life and death medical decision-making in the context of uncertain prognoses. Palliative care, which aims to reduce suffering, can assist with staff moral distress by providing space for conversations regarding goals-of-care and end-of-life decision making.
METHODS: The palliative care and NICU teams co-developed a weekly, case-based conference to discuss palliative care domains of high-risk newborns including pain and symptom management, goals of care, spiritual support, and psychosocial strengths and challenges. The Moral Distress Thermometer (MDT) and the Moral Distress Scale-Revised (MDS-R) were collected at baseline and at 6- and 12-months post-intervention implementation. Quantitative and qualitative analyses were employed as appropriate.
RESULTS: One-hundred thirty-seven participants completed both surveys at baseline including 46 physician/advanced practice providers (MD/APPs) and 91 registered nurses/other health professionals (RN/OHPs). There were statistically significant improvements in both the mean MDT scores and the mean MDS-R for the overall cohort and specifically for the RN/OHP group from baseline to 12-months post-intervention. There was a trend towards improvement on these measures among the MD/APP cohort. Qualitative analysis of the free-text responses revealed several themes describing moral distress in the NICU. Themes common to both groups included: futile/non-beneficial care, prognostic uncertainty and prognostic communication, team conflict, institutional constraints and cultural bias. The theme, “End-of-life (EOL) care inconsistent with personal values” emerged among the RN/OHPs. RN/OHPs experiences were shaped by their proximity to the patient and their role as patient advocate. The MD/APP group reported more cognitive and decisional distress.
CONCLUSION: A NICU and palliative care-weekly-collaborative conference resulted in significantly decreased moral distress among NICU staff. Qualitative data revealed that both prolonging life with life-sustaining medical therapies (LSMTs) and ending it by withdrawing LSMTs in the context of prognostic uncertainty and institutional constraints creates significant moral distress among staff. Palliative care and NICU programs should consider implementing regular interdisciplinary collaborative conferences to address this distress.
PMID:41219806 | DOI:10.1186/s12904-025-01915-y
