Moral Distress Among Pediatric Nurses Caring for Children with Life-Limiting Illness: A Cross-Sectional Study

Introduction

Pediatric nurses caring for children with life-limiting illness are routinely present at the intersection of clinical uncertainty, family hope, and the limits of curative treatment, often for extended periods across a child’s illness trajectory (Rushton, 2006; Hamric & Blackhall, 2007). This sustained proximity places nurses at particular risk of moral distress, the psychological and emotional response that arises when a clinician perceives the ethically appropriate course of action but feels constrained by institutional, interpersonal, or systemic factors from pursuing it (Jameton, 1984; Epstein & Hamric, 2009). Unaddressed moral distress has been associated with burnout, compassion fatigue, and attrition from bedside nursing roles, with downstream consequences for both workforce stability and the continuity of care experienced by children and families (Rushton et al., 2015; Whitehead et al., 2015).

Prior literature has characterized moral distress broadly across adult and pediatric nursing settings, and has identified recurring sources including perceived provision of non-beneficial or aggressive treatment near the end of life, exclusion from decision-making processes, communication gaps between the clinical team and family, and staffing or workflow constraints that limit the time available for emotional and relational care (Trotochaud et al., 2015; Sannino et al., 2019; Prentice et al., 2016). However, comparatively less work has examined the relative weight of these sources specifically among pediatric nurses caring for children with life-limiting illness, or has directly examined whether structural supports such as embedded palliative care team involvement are associated with meaningfully lower moral distress and lower intention to leave within the same sample.

Clarifying which sources of moral distress are most prominent among pediatric nurses caring for children with life-limiting illness, and whether palliative care team involvement is associated with lower distress and reduced turnover intention, has direct implications for how pediatric health systems prioritize palliative care integration, staffing models, and moral distress support programming. The purpose of this cross-sectional study was to examine the frequency and intensity of moral distress among pediatric nurses caring for children with life-limiting illness, and to examine the association between moral distress, palliative care team involvement, and intention to leave one’s current clinical position.

Methods

Design. This study used a cross-sectional, self-administered survey design distributed electronically to eligible nurses across a multi-site pediatric health system.

Setting and participants. Eligible participants were registered nurses providing direct clinical care to children (age 0–17 years) with a life-limiting diagnosis in oncology, cardiac, neonatal or pediatric intensive care, or general medical-surgical units, with at least six months of experience in their current unit. Of 410 eligible nurses invited by health-system email, 289 completed the survey (70.5% response rate), with data collection occurring over a seven-week period in 2024.

Measures. The Pediatric Moral Distress Frequency-Intensity Scale (PMD-FIS) is a 21-item, self-report instrument assessing both the frequency (0–4) and intensity (0–4) of moral distress in response to specific clinical situations, with a composite item score (frequency × intensity, range 0–16) and domain and overall scores organized into three domains: aggressive or non-beneficial treatment, communication and decision-making constraints, and staffing/resource limitations (adapted from Corley et al., 2001; Trotochaud et al., 2015). Overall composite scores reported here are scaled to a 0–25 range for interpretability. Palliative care team involvement was assessed as a unit-level characteristic (regular versus infrequent or absent palliative care team involvement in the nurse’s typical caseload). Burnout was screened using a single validated item, and participants reported whether they intended to leave their current clinical position within the next 12 months, and, if they had experienced clinically significant moral distress in the prior six months, the contributing factors involved, selected from a fixed list with an open-text option.

Statistical analysis. Mean PMD-FIS item and domain composite scores were calculated and ranked. Differences in overall moral distress composite score and intention to leave between nurses with and without regular palliative care team involvement were examined using independent-samples t-tests and chi-square tests, respectively. The association between overall moral distress composite score and intention to leave within 12 months was examined using multivariable logistic regression adjusting for years of pediatric experience and unit type, yielding an adjusted odds ratio. Contributing factors for clinically significant moral distress were summarized descriptively as the proportion of applicable respondents selecting each factor, with respondents permitted to select more than one. A two-sided p value of less than .05 was considered statistically significant.

Results

Of 289 responding nurses (Table 1), 50.9% reported regular palliative care team involvement in their typical caseload, and 74.0% reported at least one instance of clinically significant moral distress within the prior six months. Among all respondents, the highest-ranked individual moral distress items and composite scores are shown in Figure 1.

Comparing nurses with and without regular palliative care team involvement, those with regular involvement reported significantly lower overall moral distress composite scores and significantly lower intention to leave their position within 12 months, as shown in Figure 2.

In multivariable logistic regression adjusting for years of pediatric experience and unit type, higher overall moral distress composite score was independently associated with intention to leave one’s current position within 12 months (adjusted odds ratio 1.21 per one-point increase, 95% CI 1.11–1.32, p < .001). Among the 214 nurses (74.0% of the sample) who reported at least one instance of clinically significant moral distress in the prior six months, the distribution of self-reported contributing factors is shown in Figure 3.

Discussion

In this cross-sectional study of pediatric nurses caring for children with life-limiting illness across oncology, cardiac, intensive care, and general medical-surgical settings, the most highly ranked sources of moral distress were perceived continuation of non-beneficial treatment and a perceived mismatch between the family’s and clinical team’s understanding of prognosis, rather than staffing constraints alone. This pattern is consistent with prior literature suggesting that moral distress in pediatric end-of-life care is driven substantially by nurses’ positioning at the bedside interface between families and the broader care team, where they observe divergences in understanding and expectation that they are often not empowered to directly resolve (Trotochaud et al., 2015; Rushton et al., 2015).

The finding that nurses with regular palliative care team involvement reported significantly lower overall moral distress composite scores and significantly lower intention to leave their position within 12 months, with moral distress independently associated with turnover intention in adjusted analysis, is consistent with, and extends, prior evidence supporting embedded palliative care integration as a protective structural factor in pediatric nursing practice (Feudtner et al., 2011; Docherty et al., 2015). The consistency of this association across both an attitudinal measure (moral distress composite score) and a workforce-relevant behavioral intention measure (intention to leave) strengthens the interpretation that palliative care team involvement reflects a meaningful structural support rather than a marker of some other unmeasured unit characteristic alone, though the cross-sectional design limits causal certainty.

The factors cited by nurses who experienced clinically significant moral distress further reinforce the communication and decision-making findings: disagreement with the chosen treatment plan and insufficient time for emotional and communicative care were the two most commonly cited factors, each substantially more common than lack of post-event debriefing. This suggests that interventions targeting shared decision-making processes and structured inclusion of bedside nurses in goals-of-care discussions, alongside broader palliative care integration, may address a larger share of moral distress than debriefing-focused interventions alone, though both categories of support were valued by respondents and likely interact in practice.

Several limitations should be considered. This study relied on self-reported moral distress and self-reported intention to leave rather than an objective, chart-audited measure of care processes or an objective measure of subsequent turnover, and self-report may be subject to recall and social desirability bias. The cross-sectional design precludes causal inference regarding the direction of the association between palliative care team involvement and moral distress; it is possible that units with lower baseline moral distress were also more likely to have established robust palliative care integration. Finally, this study was conducted within a single pediatric health system, and the relative ranking of moral distress sources may differ in settings with different palliative care infrastructure, staffing ratios, or institutional ethics resources.

Future research should incorporate objective outcome measures, such as documented palliative care consultation timing and subsequent staff turnover data, to complement self-reported distress and intention data, and should evaluate specific interventions, such as structured nurse inclusion protocols for goals-of-care discussions, using pre-post or controlled designs. Extension of this survey approach to additional pediatric health systems with differing palliative care infrastructure, and to related roles such as respiratory therapists and child life specialists, would help clarify which sources of moral distress are broadly generalizable versus setting-specific. Taken together, these findings suggest that expanding embedded palliative care team involvement and structured inclusion of bedside nurses in goals-of-care decision-making represent priority targets for reducing moral distress and supporting workforce retention in pediatric nursing practice.

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