390 - Moral Tensions at the Bedside: A Survey of Neonatal Nurses’ Perceptions of Trisomy 18 Care

Publication Number: 4382.390

Stephanie Kukora, Children's Mercy Bioethics Center, Kansas City, MO, United States; Isabella M.. Hadden, Children's Mercy Hospitals and Clinics, Shawnee, KS, United States; Angela Knackstedt, Children's Mercy Kansas City, Lenexa, KS, KS, United States; Kelstan Ellis, Childrens Mercy Kansas City, Kansas City, MO, United States

Background: Historically, physicians have held negative perceptions of the appropriateness of providing intensive care to neonates with Trisomy 18, due to beliefs about futility and quality of life. Recently, interventions are being increasingly offered this population. Little is known about nurses' attitudes about caring for these patients.

Objective: We sought to characterize bedside nurses' perceptions of the utility of providing intensive care to patients with Trisomy 18 in a level VI neonatal intensive care unit (NICU).

Design/Methods: We developed a mixed-methods survey based on the existing literature, which was refined through expert discussion and cognitive interviews. Bedside nurses were anonymously surveyed with responses collected electronically. Items included quantitative questions of agreement (Yes/No/Other) to whether Trisomy 18 is "incompatible with life" and whether this diagnosis should impact interventions offered, open-ended free-text questions, and demographic items. Quantitative results were analyzed with descriptive statistics and Fisher Exact Test in Excel; thematic analysis was performed on qualitative responses by two independent reviewers.

Results: There were 145 responses from 317 eligible bedside NICU nurses (response rate 46%). Demographics in Table 1. More than half (53%) of nurses agreed that Trisomy 18 was incompatible with life, 29% disagreed, and 18% responded "other". Likewise, 59% felt that this diagnosis should impact interventions offered, 17% disagreed, and 24% responded "other". There were no statistically significant differences between years of experience, day or night shift, or number of patients cared for with this diagnosis.

There were 114 free-text responses. Two major themes with subthemes emerged. The first was "perceptions of prognosis" (subthemes: "compatibility with life," "survival," "quality of life," and "burdens/benefits of interventions"), with nurses endorsing a spectrum of attitudes from pessimistic to optimistic (Table 2). The second was "ethical considerations" (subthemes: "beneficence/best interest," "harm/non-maleficence," "parental authority," "justice," "moral distress," and "values differences"), as nurses identified numerous ethical aspects shaping their diverse views (Table 3).

Conclusion(s): Nurses hold diverse perspectives about Trisomy 18 prognosis. Like other clinician groups, many believe it is "incompatible with life" and that interventions should be restricted. These beliefs may contribute to moral tension experienced by bedside staff. Further research is warranted to identify support strategies for nurses' ethical distress in this context.

Table 1.
Demographics of respondents. (n=145)


Table 2.
Nurses' perceptions of prognosis/therapies for patients with Trisomy 18.

Table 3.
Subthemes and exemplary quotes of major theme "Ethical Considerations" noted by nurses influencing attitudes towards care for patients with Trisomy 18.