OBJECTIVE: Comparing demographic and clinical characteristics associated with receipt of palliative care (PC) among children who died in children’s hospitals to those who did not receive PC and understanding the trends in PC use. METHODS: This retrospective cohort study used the Pediatric Health Information System database. Children <18 years of age who died ≥5 days after admission to a Pediatric Health Information System hospital between January 1, 2001, and December 31, 2011 were included. Receipt of PC services was identified by the International Classification of Diseases, Ninth Revision code for PC. Diagnoses were grouped using major diagnostic codes. International Classification of Diseases codes and clinical transaction codes were used to evaluate all interventions. RESULTS: This study evaluated 24 342 children. Overall, 4% had coding for PC services. This increased from 1% to 8% over the study years. Increasing age was associated with greater receipt of PC. Children with the PC code had fewer median days in the hospital (17 vs 21), received fewer invasive interventions, and fewer died in the ICU (60% vs 80%). Receipt of PC also varied by major diagnostic codes, with the highest proportion found among children with neurologic disease. CONCLUSIONS: Most pediatric patients who died in a hospital did not have documented receipt of PC. Children receiving PC are different from those who do not in many ways, including receipt of fewer procedures. Receipt of PC has increased over time; however, it remains low, particularly among neonates and those with circulatory diseases.

Objective To describe variability in end-of-life practices among tertiary care pediatric intensive care units (PICUs) in the U.S. Design Secondary analysis of data prospectively collected from a random sample of patients (n=10,078) admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network (CPCCRN) between December 4, 2011 and April 7, 2013. Setting Seven clinical centers affiliated with the CPCCRN Patients Patients included in the primary study were <18 years of age, admitted to a PICU, and not moribund on PICU admission. Patients included in the secondary analysis were those who died during their hospital stay. Interventions None. Measurements and Main Results Two hundred and seventy-five (2.7%, range across sites 1.3%–5.0%) patients died during their hospital stay; of these, 252 (92%, 76%–100%) died in a PICU. Discussions with families about limitation or withdrawal of support occurred during the initial PICU stay for 173 (63%, 47%–76%, p=0.27) patients who died. Of these, palliative care was consulted for 67 (39%, 12%–46%); pain service for 11 (6%, 10 of which were at a single site); and ethics committee for 6 (3%, from 3 sites). Mode of death was withdrawal of support for 141 (51%, 42%–59%), failed CPR for 53 (19%, 12%–28%), limitation of support for 46 (17%, 7%–24%), and brain death for 35 (13%, 8%–20%); mode of death did not differ across sites (p=0.58). Organ donation was requested from 101 (37%, 17%–88%, p<0.001) families. Of these, 20 (20%, 0%–64%) donated. Sixty-two (23%, 10%–53%, p<0.001) deaths were medical examiner cases. Of non-medical examiner cases (n=213), autopsy was requested for 79 (37%, 17%–75%, p<0.001). Of autopsies requested, 53 (67%, 50%–100%) were performed. Conclusions Most deaths in CPCCRN-affiliated PICUs occur after life support has been limited or withdrawn. Wide practice variation exists in requests for organ donation and autopsy.

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Objectives Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or withdrawal of life support with clinicians during their child’s PICU stay and to determine the factors associated with limitation or withdrawal of life support discussions. Design Secondary analysis of data prospectively collected from a random sample of children admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013. Setting Seven clinical sites affiliated with the Collaborative Pediatric Critical Care Research Network. Patients Ten thousand seventy-eight children less than 18 years old, admitted to a PICU, and not moribund at admission. Interventions None. Measurements and Main Results Families of 248 children (2.5%) discussed limitation or withdrawal of life support with clinicians. By using a multivariate logistic model, we found that PICU admission age less than 14 days, reduced functional status prior to hospital admission, primary diagnosis of cancer, recent catastrophic event, emergent PICU admission, greater physiologic instability, and government insurance were independently associated with higher likelihood of discussing limitation or withdrawal of life support. Black race, primary diagnosis of neurologic illness, and postoperative status were independently associated with lower likelihood of discussing limitation or withdrawal of life support. Clinical site was also independently associated with likelihood of limitation or withdrawal of life support discussions. One hundred seventy-three children (69.8%) whose families discussed limitation or withdrawal of life support died during their hospitalization; of these, 166 (96.0%) died in the PICU and 149 (86.1%) after limitation or withdrawal of life support was performed. Of those who survived, 40 children (53.4%) were discharged with severe or very severe functional abnormalities, and 15 (20%) with coma/vegetative state. Conclusions Clinical factors reflecting type and severity of illness, sociodemographics, and institutional practices may influence whether limitation or withdrawal of life support is discussed with families of PICU patients. Most children whose families discuss limitation or withdrawal of life support die during their PICU stay; survivors often have substantial disabilities.