(71 - Saturday) Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit: Mixed Methods Interpretation of Interprofessional Staff Responses

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Abstract: Introduction
Intensive, potentially burdensome therapies and decision-making complexity at end of life (EOL) in a highly inter-professional environment may result in distress for pediatric cardiac intensive care unit (PCICU) staff.

Objective
To characterize PCICU staff perceptions of quality of dying and death (QODD).

Methods: We performed a single-site cross-sectional survey of PCICU staff over 2 years. Interdisciplinary staff (bedside nurses, allied health professionals, and medical providers including physicians and nurse practitioners) rated 20 items to produce a QODD score. This mixed methods study analyzed voluntarily provided free-text responses. Content analysis yielded codes which were collated into categories based on recurring patterns. Three authors independently coded responses and reached consensus through discussion. Response sentiment was classified as positive, negative or both. We compared coding and sentiment frequency based on discipline, medical intensity of EOL care and QODD score quartiles.

Results
Among 60 deaths, 713 surveys were completed (72% response rate; median [IQR] of 11 [5-20] surveys per death) including 269 (38%) with free text responses. These responses were relatively more likely from allied health clinicians and lower intensity deaths (Table). We identified 583 codes across six categories: relational dynamics, clinical circumstances, family experiences, emotional expressions, temporal conditions, and structural/situational factors (Table).

The focus of qualitative responses differed by discipline, QODD score quartile, medical intensity, and sentiment (Table). Clinical circumstances were relatively more likely to be described by medical providers versus other disciplines (P=.042). Emotional responses were more common from the lowest QODD score quartile surveys (P=0.001). Among responses coded for temporal conditions, almost 80% were from surveys of children with high medical intensity (P=0.005). Conversely, family experience was more likely to be coded in low intensity responses (p=0.006). Relational dynamics and family experience were more likely to be associated with positive sentiments (p < 0.001 and p=0.032 respectively).

Many responses (45%) contained both positive and negative sentiments. Of lowest quartile QODD responses, 50 (71%) contained positive sentiments and of highest quartile responses; 34 (61%) had negative sentiments. Positive or negative sentiment frequency differed by discipline (p=0.021) with more negative comments from medical providers (29% vs 22% and 11% in allied health and nursing, p=0.019) but no difference according to care intensity (p=0.451).

Conclusions
Clinicians often reflected on both positive and negative aspects while evaluating the quality of EOL for PCICU patients. Family experience and relational dynamics shaped clinician’s positive perceptions of QODD. These finding indicate possible targets for interventions aimed at improving EOL care.