Death and Cardiac Disease in Pediatric Hospitals and the Role of Subspecialty Palliative Care

OBJECTIVES: To characterize end-of-life (EOL) experiences of children and adults with heart disease who die in pediatric hospitals. METHODS: This multicenter retrospective study included patients with heart disease who died within 31 US pediatric referral centers from July 1, 2021, to June 30, 2023. Data from terminal admissions were collected. Outcomes included high medical intensity EOL care, which was defined based on therapies used on day of death and active resuscitation (CPR) as the mode of death. Multivariable analyses, accounting for clustering by center, were performed to identify factors associated with outcomes, with adjusted odds ratios (aOR) and 95% CIs presented. RESULTS: We reviewed 1044 decedents. Median age at admission was 67 days (25%, 75%: 0 d, 3.2 y). Subspecialty palliative care (SPC) followed 696 (68%) patients, with initial consultation a median 20 days before death (25%, 75%: 5, 69). High medical intensity care and CPR occurred at EOL in 654 (63%) and 172 (17%) patients, respectively. In multivariable analyses, greater odds of high medical intensity EOL care were observed for patients with cardiomyopathy or transplant diagnoses (aOR 1.70; 95% CI 1.06, 2.73) or cardiac surgery (aOR 3.33; 95% CI 2.39, 4.63), and lower odds were observed in patients with genetic abnormalities (aOR 0.68; 95% CI 0.51, 0.90) or SPC involvement (aOR 0.44; 95% CI 0.32, 0.60). Odds of CPR at EOL were lower with SPC involvement (aOR 0.34; 95% CI 0.24, 0.50), inversely associated with Child Opportunity Index (per 10-point increase: aOR 0.91; 95% CI 0.85, 0.97), and higher for patients of Black race (aOR 1.94; 95% CI 1.23, 3.06). CONCLUSION: Patients with heart disease who die in US pediatric hospitals frequently experience high medical intensity care and CPR at EOL. Odds of these clinical outcomes were significantly lower if SPC is involved.

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Journal
PEDIATRICS
Published
2026-07-17
DOI
https://doi.org/10.1542/peds.2025-074622
Primary Topic
Childhood Cancer Survivors' Quality of Life
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article
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article

Death and Cardiac Disease in Pediatric Hospitals and the Role of Subspecialty Palliative Care

Kristin M. Elgersma, Agnieszka Kulikowska, Asaad G. Beshish, Sukumar Suguna Narasimhulu et al.
PEDIATRICS
Childhood Cancer Survivors' Quality of Life
article

Death and Cardiac Disease in Pediatric Hospitals and the Role of Subspecialty Palliative Care

Kristin M. Elgersma, Agnieszka Kulikowska, Asaad G. Beshish, Sukumar Suguna Narasimhulu, David K. Werho, Christopher W. Mastropietro, Katherine Cashen, Friederike Strelow, Joshua Wong, Jordan Schneider, Robert T. Ohman, Hannah R. Daughtrey, Saúl Flores, Reshma Reddy, Jennifer E. Schramm, Claudia Delgado‐Corcoran, Chetana Reddy, Kimberly I. Mills, Katie M. Moynihan, Christine A. Capone, Maria Batsis, Karan B. Karki, Brittany L. Shutes, Ahmed Asfari, James Ting, Elizabeth Prentice, Kieran Leong, Meghan M. Chlebowski, Lorelei Robinson, Martin Wakeham, Rohit Loomba, Scott M. Leopold, Patrice Pryce, Nathaniel Sznycer-Taub
article en

Abstract

OBJECTIVES: To characterize end-of-life (EOL) experiences of children and adults with heart disease who die in pediatric hospitals. METHODS: This multicenter retrospective study included patients with heart disease who died within 31 US pediatric referral centers from July 1, 2021, to June 30, 2023. Data from terminal admissions were collected. Outcomes included high medical intensity EOL care, which was defined based on therapies used on day of death and active resuscitation (CPR) as the mode of death. Multivariable analyses, accounting for clustering by center, were performed to identify factors associated with outcomes, with adjusted odds ratios (aOR) and 95% CIs presented. RESULTS: We reviewed 1044 decedents. Median age at admission was 67 days (25%, 75%: 0 d, 3.2 y). Subspecialty palliative care (SPC) followed 696 (68%) patients, with initial consultation a median 20 days before death (25%, 75%: 5, 69). High medical intensity care and CPR occurred at EOL in 654 (63%) and 172 (17%) patients, respectively. In multivariable analyses, greater odds of high medical intensity EOL care were observed for patients with cardiomyopathy or transplant diagnoses (aOR 1.70; 95% CI 1.06, 2.73) or cardiac surgery (aOR 3.33; 95% CI 2.39, 4.63), and lower odds were observed in patients with genetic abnormalities (aOR 0.68; 95% CI 0.51, 0.90) or SPC involvement (aOR 0.44; 95% CI 0.32, 0.60). Odds of CPR at EOL were lower with SPC involvement (aOR 0.34; 95% CI 0.24, 0.50), inversely associated with Child Opportunity Index (per 10-point increase: aOR 0.91; 95% CI 0.85, 0.97), and higher for patients of Black race (aOR 1.94; 95% CI 1.23, 3.06). CONCLUSION: Patients with heart disease who die in US pediatric hospitals frequently experience high medical intensity care and CPR at EOL. Odds of these clinical outcomes were significantly lower if SPC is involved.

PEDIATRICS
University of North Carolina at Chapel Hill (US), Children's Hospital of Wisconsin (US), Cincinnati Children's Hospital Medical Center (US), George Washington University Hospital (US), Boston Children's Hospital (US), University of Minnesota (US), Nationwide Children's Hospital (US), Primary Children's Hospital (US), Lucile Packard Children's Hospital (US), Children's National (US), Johns Hopkins University (US), Medical University of South Carolina (US), Medical College of Wisconsin (US), Columbia University Irving Medical Center (US), Johns Hopkins Medicine (US), OSF Saint Francis Medical Center (US), Riley Hospital for Children (US), University of Florida (US), Rady Children's Hospital-San Diego (US), Cardinal Glennon Children’s Medical Center (US), Nemours Children's Health System (US), Seattle Children's Hospital (US), Cohen Children's Medical Center (US), Lurie Children's Hospital (US), Helen DeVos Children's Hospital (US), Children's Hospital of Michigan (US), Advocate Children's Hospital (US), University of Wisconsin American Family Children's Hospital (US), Duke University Health System (US), Children's Healthcare of Atlanta (US), Texas Children's Hospital (US), C. S. Mott Children's Hospital (US), Le Bonheur Children's Hospital (US), Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Indiana University – Purdue University Indianapolis (US), The University of Texas Southwestern Medical Center (US)
Good health and well-being
Openalex Percentile: Top 6%
Childhood Cancer Survivors' Quality of Life
DOISourceOpenAlex
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