{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,27]],"date-time":"2026-10-27T16:07:21Z","timestamp":1793117241687,"version":"4.5.0"},"reference-count":48,"publisher":"American Academy of Pediatrics (AAP)","issue":"2","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,8,1]]},"abstract":"<jats:sec>\n                    <jats:title\/>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>OBJECTIVES<\/jats:title>\n                    <jats:p>To characterize end-of-life (EOL) experiences of children and adults with heart disease who die in pediatric hospitals.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>METHODS<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS<\/jats:title>\n                    <jats:p>We reviewed 1044 decedents. Median age at admission was 67\u00a0days (25%, 75%: 0\u00a0d, 3.2\u00a0y). Subspecialty palliative care (SPC) followed 696 (68%) patients, with initial consultation a median 20\u00a0days 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).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSION<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1542\/peds.2025-074622","type":"journal-article","created":{"date-parts":[[2026,7,17]],"date-time":"2026-07-17T00:02:37Z","timestamp":1784246557000},"source":"Crossref","is-referenced-by-count":2,"title":["Death and Cardiac Disease in Pediatric Hospitals and the Role of Subspecialty Palliative Care"],"prefix":"10.1542","volume":"158","author":[{"given":"Katie M.","family":"Moynihan","sequence":"first","affiliation":[{"name":"1Department of Cardiology, Boston Children\u2019s Hospital; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine","family":"Cashen","sequence":"additional","affiliation":[{"name":"2Department of Pediatrics, Division of Critical Care Medicine, Duke University and Duke University Health System, Durham, North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hannah R.","family":"Daughtrey","sequence":"additional","affiliation":[{"name":"3Department of Pediatrics, Division of Cardiac Critical Care Medicine, George Washington University School of Medicine and Health Sciences and Children\u2019s National Hospital, Washington, District of Columbia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia","family":"Delgado-Corcoran","sequence":"additional","affiliation":[{"name":"4Department of Pediatrics, University of Utah, Divisions of Pediatric Critical Care Medicine and Hospice and Palliative Care, Intermountain Primary Children\u2019s Hospital, Salt Lake City, Utah"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lorelei","family":"Robinson","sequence":"additional","affiliation":[{"name":"1Department of Cardiology, Boston Children\u2019s Hospital; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James","family":"Ting","sequence":"additional","affiliation":[{"name":"1Department of Cardiology, Boston Children\u2019s Hospital; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Saul","family":"Flores","sequence":"additional","affiliation":[{"name":"5Department of Pediatrics, Division of Critical Care and Division of Cardiology, Baylor College of Medicine, Texas Children\u2019s Hospital, Houston, Texas"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Asaad G.","family":"Beshish","sequence":"additional","affiliation":[{"name":"6Department of Pediatrics, Division of Pediatric Cardiology, Emory University School of Medicine, Children\u2019s Healthcare of Atlanta, Atlanta, Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meghan M.","family":"Chlebowski","sequence":"additional","affiliation":[{"name":"7Department of Pediatrics, Division of Pediatric Cardiology, University of Cincinnati College of Medicine, The Heart Institute, Cincinnati Children\u2019s Hospital Medical Center, Cincinnati, Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"Batsis","sequence":"additional","affiliation":[{"name":"8Department of Pediatrics, Division of Pediatric Cardiology, Stanford University School of Medicine, Lucile Packard Children\u2019s Hospital, Palo Alto, California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patrice","family":"Pryce","sequence":"additional","affiliation":[{"name":"9Department of Pediatrics, Sections of Critical Care and Palliative Care, Columbia University Irving Medical Center, New York, New York"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ahmed","family":"Asfari","sequence":"additional","affiliation":[{"name":"10Heart Center, Children\u2019s Health, Division of Cardiology, Department of Pediatrics, University of Texas Southwestern Medical Center, Dallas, Texas"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nathaniel","family":"Sznycer-Taub","sequence":"additional","affiliation":[{"name":"11Department of Pediatrics, Division of Pediatric Cardiology, C. S. Mott Children\u2019s Hospital, University of Michigan, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karan B.","family":"Karki","sequence":"additional","affiliation":[{"name":"12Department of Pediatrics, Division of Cardiology, University of Tennessee Health Science Center, Le Bonheur Children\u2019s Hospital, Memphis, Tennessee"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin","family":"Wakeham","sequence":"additional","affiliation":[{"name":"13Department of Pediatrics, Division of Critical Care, Medical College of Wisconsin, Herma Heart Institute \u2013 Children\u2019s Wisconsin, Milwaukee, Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert T.","family":"Ohman","sequence":"additional","affiliation":[{"name":"14Department of Pediatrics, Division of Critical Care Medicine, Seattle Children\u2019s Hospital, University of Washington, Seattle, Washington"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brittany L.","family":"Shutes","sequence":"additional","affiliation":[{"name":"15Department of Pediatrics, Sections of Cardiology and Critical Care, The Ohio State University College of Medicine, Nationwide Children\u2019s Hospital, Columbus, Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sukumar Suguna","family":"Narasimhulu","sequence":"additional","affiliation":[{"name":"16Division of Pediatric Cardiology, Department of Pediatrics, Congenital Heart Center, University of Florida, Gainesville, Florida"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer E.","family":"Schramm","sequence":"additional","affiliation":[{"name":"17Departments of Anesthesiology and Critical Care Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Friederike","family":"Strelow","sequence":"additional","affiliation":[{"name":"18Nemours Cardiac Center for Research and Innovation, Nemours Children\u2019s Health, Wilmington, Delaware"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Reshma","family":"Reddy","sequence":"additional","affiliation":[{"name":"19Department of Pediatrics, Division of Pediatric Cardiology, Medical University of South Carolina, Charleston, South Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rohit","family":"Loomba","sequence":"additional","affiliation":[{"name":"20Department of Pediatrics, Division of Cardiology, Ann & Robert H. Lurie Children\u2019s Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua H.","family":"Wong","sequence":"additional","affiliation":[{"name":"21Department of Pediatrics, Division of Pediatric Cardiology, Advocate Children\u2019s Hospital, Oak Lawn, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David K.","family":"Werho","sequence":"additional","affiliation":[{"name":"22Department of Pediatrics, Division of Pediatric Cardiology, University of California San Diego, Rady Children\u2019s Hospital, San Diego, California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine A.","family":"Capone","sequence":"additional","affiliation":[{"name":"23Cohen Children\u2019s Heart Center, Cohen Children\u2019s Medical Center, Northwell, New Hyde Park, New York"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jordan","family":"Schneider","sequence":"additional","affiliation":[{"name":"24Department of Pediatrics, Division of Critical Care Medicine, Central Michigan University College of Medicine, Children\u2019s Hospital of Michigan, Detroit, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kieran","family":"Leong","sequence":"additional","affiliation":[{"name":"25Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Agnieszka","family":"Kulikowska","sequence":"additional","affiliation":[{"name":"26University of Illinois College of Medicine Peoria, Division of Pediatric Critical Care, Division of Cardiology, OSF St. Francis Medical Center\/Children\u2019s Hospital of Illinois, Peoria, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristin M.","family":"Elgersma","sequence":"additional","affiliation":[{"name":"27Child and Family Health Cooperative, School of Nursing, University of Minnesota, Minneapolis, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Prentice","sequence":"additional","affiliation":[{"name":"28Department of Pediatrics, Division of Critical Care, Helen Devos Children\u2019s Hospital, Grand Rapids, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chetana","family":"Reddy","sequence":"additional","affiliation":[{"name":"29Department of Pediatrics, Division of Pediatric Cardiology, Saint Louis University School of Medicine, SSM Cardinal Glennon Children\u2019s Hospital, St. Louis, Missouri"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Scott M.","family":"Leopold","sequence":"additional","affiliation":[{"name":"30Department of Pediatrics, Division of Critical Care, American Family Children\u2019s Hospital, Madison, Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kimberly I.","family":"Mills","sequence":"additional","affiliation":[{"name":"1Department of Cardiology, Boston Children\u2019s Hospital; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher W.","family":"Mastropietro","sequence":"additional","affiliation":[{"name":"31Department of Pediatrics, Division of Critical Care, Indiana University School of Medicine, Riley Hospital for Children, Indianapolis, Indiana"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"417","published-online":{"date-parts":[[2026,7,17]]},"reference":[{"issue":"2","key":"2026101308524821700_r1","doi-asserted-by":"crossref","first-page":"143","DOI":"10.1097\/PCC.0000000000001751","article-title":"Variation in adjusted mortality for medical admissions to pediatric cardiac 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