End-of-life care for children with cardiac disease is often medically intense and occurs in a hospital setting.13  Previous studies have found that fewer than half of children with cardiac disease who die while hospitalized have code status discussions (CSDs).4  Moreover, receiving active cardiopulmonary resuscitation and lack of advanced care planning (ACP) at the time of death is associated with fewer parents perceiving a “good death” for their child.4  Data are lacking, however, on more specific details of CSDs in children with cardiac disease. In this study, we sought to further describe end-of-life care in pediatric surgical patients with cardiac disease during their final hospital stay (terminal admission). Because prognostic uncertainty and acute clinical decline are cited as potential challenges to ACP, we evaluated differences in presence and timing of CSDs between children who were admitted at birth and never survived to discharge (group 1) and those who died during a subsequent hospitalization (group 2). We hypothesized that children with critical cardiac disease who did not survive to discharge would have more frequent documentation of CSDs and higher frequency of comfort care at the end of life compared with older patients who died during a later hospitalization.

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.

TABLE 1

Patient and Hospitalization Characteristics in Pediatric Surgical Patients With Cardiac Disease During Terminal Admissions

Group 1
Patients Who Never Survived to Discharge (n = 48)
Group 2
Patients Readmitted for Terminal Admission
(n = 30)
P
Patient sociodemographic characteristics 
 Female, n (%) 26 (54.2) 20 (67.0) .275 
 Age (years), mean ± SD 0.08 (0.017–0.21) 0.79 (0.33–13.0) <.001 
 Race and ethnic group, self-reported, n (%)   .909 
  Hispanic 4 (8.3) 2 (6.7)  
  Non-Hispanic Black 14 (29.2) 11 (36.7)  
  Non-Hispanic White 27 (56.3) 16 (53.3)  
  Other or unknown 3 (6.3) 1 (3.3)  
 English as primary language, n (%) 46 (95.8) 29 (96.7) 1.00 
Hospitalization characteristics 
 Type of cardiac disease   .145 
  Congenital 48 (100) 28 (93.3)  
  Acquired 0 (0) 2 (6.67)  
  Number of procedures, median (Q1, Q3) 2 (1, 3) 1 (1, 3) .317 
 Location of death, n (%) 
  Floor 1 (2.1) 1.00 
  ICU 43 (89.6) 28 (93.3)  
  Procedure suite or operating room 4 (8.3) 2 (6.7)  
 Mode of death, n (%)   .562 
  Full resuscitation attempt with active CPR 13 (27.1) 5 (16.7)  
  No escalation of carea 4 (8.3) 5 (16.7)  
  Transition away from invasive careb 28 (58.3) 18 (60.0)  
  Comfort carec 3 (6.3) 2 (6.6)  
Group 1
Patients Who Never Survived to Discharge (n = 48)
Group 2
Patients Readmitted for Terminal Admission
(n = 30)
P
Patient sociodemographic characteristics 
 Female, n (%) 26 (54.2) 20 (67.0) .275 
 Age (years), mean ± SD 0.08 (0.017–0.21) 0.79 (0.33–13.0) <.001 
 Race and ethnic group, self-reported, n (%)   .909 
  Hispanic 4 (8.3) 2 (6.7)  
  Non-Hispanic Black 14 (29.2) 11 (36.7)  
  Non-Hispanic White 27 (56.3) 16 (53.3)  
  Other or unknown 3 (6.3) 1 (3.3)  
 English as primary language, n (%) 46 (95.8) 29 (96.7) 1.00 
Hospitalization characteristics 
 Type of cardiac disease   .145 
  Congenital 48 (100) 28 (93.3)  
  Acquired 0 (0) 2 (6.67)  
  Number of procedures, median (Q1, Q3) 2 (1, 3) 1 (1, 3) .317 
 Location of death, n (%) 
  Floor 1 (2.1) 1.00 
  ICU 43 (89.6) 28 (93.3)  
  Procedure suite or operating room 4 (8.3) 2 (6.7)  
 Mode of death, n (%)   .562 
  Full resuscitation attempt with active CPR 13 (27.1) 5 (16.7)  
  No escalation of carea 4 (8.3) 5 (16.7)  
  Transition away from invasive careb 28 (58.3) 18 (60.0)  
  Comfort carec 3 (6.3) 2 (6.6)  

CPR, cardiopulmonary resuscitation; SD, standard deviation.

a

Receipt of invasive care but no escalation or full resuscitation at the time of death.

b

Invasive care provided then palliatively withdrawn before death.

c

No invasive care received, transitioned from standard to comfort-focused care before death.

TABLE 2

Code Status Characteristics and Documented Discussions in Pediatric Surgical Patients With Cardiac Disease During Terminal Admissions

Group 1
Patients Who Never Survived to Discharge (n = 48)
Group 2
Patients Readmitted for Terminal Admission
(n = 30)
P
Code status order on admission, n (%)   1.000 
 Full code 47 (97.9) 30 (100)  
 Limited resuscitation 0 (0) 0 (0)  
 Allow natural death 1 (2.1) 0 (0)  
Code status order at time of death, n (%)   .633 
 Full code 22 (45.8) 13 (43.3)  
 Limited resuscitation 6 (12.5) 2 (6.7)  
 Allow natural death 20 (41.7) 15 (50)  
Documented CSD, n (%) 36 (75) 30 (100) .002 
Content and congruity within CSD 
 Documented parental preference regarding code status, n (%)a 33 (91.7) 25 (83.3) .453 
 Documented provider recommendation regarding code status, n (%)a 30 (83.3) 22 (73.3) .375 
 Discrepancy between provider recommendation and family preference during CSD, n (%)a 4 (14.3) 7 (31.8) .178 
 Discrepancy between code status order and resuscitation attempts at time of death, n (%)a 9 (18.8) 8 (26.7) .416 
Timing of CSD 
 Earliest documented CSD (days after admission), median (95% CI)b 25 (15–87) 12 (4–21) .003 
 Earliest documented CSD (days before death), median (95% CI) 5 (2–27) 3 (1–10) .143 
 Last documented CSD (days before death), median (Q1, Q3)a 0 (0, 0) 0 (0, 0) .675 
Group 1
Patients Who Never Survived to Discharge (n = 48)
Group 2
Patients Readmitted for Terminal Admission
(n = 30)
P
Code status order on admission, n (%)   1.000 
 Full code 47 (97.9) 30 (100)  
 Limited resuscitation 0 (0) 0 (0)  
 Allow natural death 1 (2.1) 0 (0)  
Code status order at time of death, n (%)   .633 
 Full code 22 (45.8) 13 (43.3)  
 Limited resuscitation 6 (12.5) 2 (6.7)  
 Allow natural death 20 (41.7) 15 (50)  
Documented CSD, n (%) 36 (75) 30 (100) .002 
Content and congruity within CSD 
 Documented parental preference regarding code status, n (%)a 33 (91.7) 25 (83.3) .453 
 Documented provider recommendation regarding code status, n (%)a 30 (83.3) 22 (73.3) .375 
 Discrepancy between provider recommendation and family preference during CSD, n (%)a 4 (14.3) 7 (31.8) .178 
 Discrepancy between code status order and resuscitation attempts at time of death, n (%)a 9 (18.8) 8 (26.7) .416 
Timing of CSD 
 Earliest documented CSD (days after admission), median (95% CI)b 25 (15–87) 12 (4–21) .003 
 Earliest documented CSD (days before death), median (95% CI) 5 (2–27) 3 (1–10) .143 
 Last documented CSD (days before death), median (Q1, Q3)a 0 (0, 0) 0 (0, 0) .675 

CI, confidence interval; CSD, code status discussion.

a

Only patients for whom a code status discussion was documented were considered (n = 36 for group 1 and n = 30 for group 2).

b

All patients were considered but those for whom a code status discussion was not documented were treated as right-censored at 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.

Dr Valente designed the data collection instrument, collected data, and drafted the initial manuscript; Dr Fisher collected data, carried out initial analysis, and critically reviewed and revised the manuscript; Dr Wolf designed the data collection instrument, carried out the data analyses, and drafted the initial manuscript; Dr Tanious conceptualized and designed the study, collected data, carried out the initial analysis, and critically reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: No external funding.

CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest relevant to disclose.

ACP

advance care planning

CSD

code status discussions

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