Code Status Discussions in Pediatric Patients With Heart Disease During Terminal Admissions

This retrospective study identified patients ≤18 years old with congenital or acquired heart disease who underwent at least 1 surgical procedure during a terminal hospitalization at a single center from January 2016 to December 2021. Electronic health record data were abstracted to obtain sociodemographic and hospitalization characteristics, presence and timing of code status discussions, code status order changes, and resuscitation at the time of death. Records were used to identify discrepancies between provider recommendation and family preference for code status, as well as between final code status order and resuscitation received at the time of death. This study was considered exempt from requiring patient consent by the institutional review board of the Medical University of South Carolina given its retrospective nature. Differences in categorical characteristics were evaluated using χ² tests or Fisher exact tests when appropriate. Differences in continuous characteristics by terminal admission status (never discharged versus readmission) were evaluated using the Wilcoxon rank sum test. All analyses were conducted in SAS v. 9.4 (SAS Institute, Cary, NC).

Of 78 total pediatric patients with cardiac disease who underwent surgery during a terminal admission, group 1 (children who were admitted at birth and never survived to discharge) contained 48 patients (61.5%) and group 2 (children who were readmitted for their terminal admission) contained 30 patients (38.5%). Patients in group 1 were younger and had a longer length of stay than patients in group 2 (Table 1). There were no significant differences in gender, primary language, or racial or ethnic background between the 2 groups. Similar rates of ICU admission, number of procedures, location, and mode of death were observed between those in group 1 and group 2. Nearly all patients (98.7%) were ordered for full code on admission (Table 2). At the time of death, groups 1 and 2 had similar code status orders: full code (45.8% and 43.3%, respectively), limited resuscitation (specific orders for compressions, cardioversion, intubation, and medications, 12.5% and 6.7%), and allow natural death (no resuscitative measures or new medical interventions, 41.7% and 50%). Children in group 1 were less likely to have documented CSDs compared with group 2 patients (75% vs 100%, P = .002). Among children with documented CSDs, these occurred much later in the admission in group 1 as opposed to group 2 children (25 vs 12 days, P = .003). Although there were no statistically significant differences between the cohorts, a sizeable number of patients in each group were noted to have discrepancies between provider recommendation and family preference during CSDs as well as between final code status order and resuscitation received at the time of death.

Pediatric cardiac patients often experience high-intensity, hospital-based care at the end of life.⁵  In this single-center cohort study, we found that pediatric surgical patients with cardiac disease who were admitted at birth and never survived to discharge had lower rates of CSD documentation compared with patients who died during a subsequent hospitalization. Notably, these discussions occurred much later in the hospitalization despite a longer length of stay in these children who never survived to discharge. This is important given that other work has found that delayed ACP and code status changes during terminal hospitalizations leads to a lower quality of life in a patient’s final days.^6,7  Our study likewise highlights significant rates of discrepancies between provider recommendations and family preferences for code status changes, as well as discrepancies between the code status order and actual resuscitation received at the time of death. These inconsistencies stress the importance of the need for goal-concordant care and advanced planning with consistent documentation. Because this study is limited in its retrospective analysis of a single center, future studies should seek to confirm these trends in a more heterogenous population and assess for disparities within groups. Nevertheless, our work highlights the urgent need to develop strategies to standardize ACP and ensure concordant end-of-life care is universally received by pediatric patients with cardiac disease.

ACP

advance care planning

CSD

code status discussions