Death and cardiac disease in pediatric hospitals and the role of subspecialty palliative care

Authors

• Katie M. Moynihan, Department of Cardiology, Boston Children's Hospital; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts.
• Katherine Cashen, Department of Pediatrics, Division of Critical Care Medicine, Duke University and Duke University Health System, Durham, North Carolina.
• Hannah R. Daughtrey, Department of Pediatrics, Division of Cardiac Critical Care Medicine, George Washington University School of Medicine and Health Sciences and Children's National Hospital, Washington, District of Columbia.
• Claudia Delgado-Corcoran, Department of Pediatrics, University of Utah, Divisions of Pediatric Critical Care Medicine and Hospice and Palliative Care, Intermountain Primary Children's Hospital, Salt Lake City, Utah.
• Lorelei Robinson, Department of Cardiology, Boston Children's Hospital; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts.
• James Ting, Department of Cardiology, Boston Children's Hospital; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts.
• Saul Flores, Department of Pediatrics, Division of Critical Care and Division of Cardiology, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas.
• Asaad G. Beshish, Department of Pediatrics, Division of Pediatric Cardiology, Emory University School of Medicine, Children's Healthcare of Atlanta, Atlanta, Georgia.
• Meghan M. Chlebowski, Department of Pediatrics, Division of Pediatric Cardiology, University of Cincinnati College of Medicine, The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
• Maria Batsis, Department of Pediatrics, Division of Pediatric Cardiology, Stanford University School of Medicine, Lucile Packard Children's Hospital, Palo Alto, California.
• Patrice Pryce, Department of Pediatrics, Sections of Critical Care and Palliative Care, Columbia University Irving Medical Center, New York, New York.
• Ahmed Asfari, Heart Center, Children's Health, Division of Cardiology, Department of Pediatrics, University of Texas Southwestern Medical Center, Dallas, Texas.
• Nathaniel Sznycer-Taub, Department of Pediatrics, Division of Pediatric Cardiology, C. S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan.
• Karan B. Karki, Department of Pediatrics, Division of Cardiology, University of Tennessee Health Science Center, Le Bonheur Children's Hospital, Memphis, Tennessee.
• Martin Wakeham, Department of Pediatrics, Division of Critical Care, Medical College of Wisconsin, Herma Heart Institute - Children's Wisconsin, Milwaukee, Wisconsin.
• Robert T. Ohman, Department of Pediatrics, Division of Critical Care Medicine, Seattle Children's Hospital, University of Washington, Seattle, Washington.
• Brittany L. Shutes, Department of Pediatrics, Sections of Cardiology and Critical Care, The Ohio State University College of Medicine, Nationwide Children's Hospital, Columbus, Ohio.
• Sukumar Suguna Narasimhulu, Division of Pediatric Cardiology, Department of Pediatrics, Congenital Heart Center, University of Florida, Gainesville, Florida.
• Jennifer E. Schramm, Departments of Anesthesiology and Critical Care Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland.
• Friederike Strelow, Nemours Cardiac Center for Research and Innovation, Nemours Children's Health, Wilmington, Delaware.
• Reshma Reddy, Department of Pediatrics, Division of Pediatric Cardiology, Medical University of South Carolina, Charleston, South Carolina.
• Rohit Loomba, Department of Pediatrics, Division of Cardiology, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois.
• Joshua H. Wong, Advocate Health - MidwestFollow
• et al

Recommended Citation

Moynihan KM, Cashen K, Daughtrey HR, et al. Death and Cardiac Disease in Pediatric Hospitals and the Role of Subspecialty Palliative Care. Pediatrics. Published online July 17, 2026. doi:10.1542/peds.2025-074622

Affiliations

Advocate Children's Hospital, Oak Lawn

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.

Type

Article

PubMed ID

42463152