Abstract

1.Describe the demographic and clinical characteristics of pediatric patients who die in hospitals in the U.S.2.Explain three key aspects of the patterns of medical interventions that these patients receive, including when the interventions are first used, how long they are used, and how they are used during the final 3 days of life.3.Analyze how these patterns of care present challenges and opportunities for the provision of pediatric palliative care. The vast majority of pediatric deaths, attributed to either acute or chronic conditions, continue to occur in hospitals, which thus remain important sites of pediatric end of life care. Characterize the nature and intensity of inpatient end of life care received by infants, children, and adolescents. Population-level case series utilizing detailed hospitalization records of 22,849 patients. Most deaths were of infants less than a year of age (67.3%). The median length of stay in children's hospitals (CH) was 6 days (interquartile range: 1, 24) and in general hospitals (GH), 1 day (IQR: 1, 4). The majority of patients had been treated during their hospitalization with mechanical ventilation (CH, 81.8%; GH, 52.1%), and a considerable fraction of patients in children's hospitals with extracorporeal membranous oxygenation (CH, 9.0%; GH, 0.4%) and dialysis (CH, 6.6%; GH, 0.9%). Exposure of patients at any time during their hospitalization to either any type of opioid (CH, 83.5%; GH, 39.5%) or to benzodiazepines or other sedative medications (CH, 74.0%; GH, 28.9%) were lower than expected. Patterns of exposure to interventions on the last days of life indicate a sustained high level of intensity through to the last day. Pediatric patients who die in hospitals commonly receive intensive and often highly invasive interventions but not uncommonly without treatment with opioid or sedating medications.

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