Differences in Characteristics of Dying Children Who Receive and Do Not Receive Palliative Care

Abstract

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.

Effect of pediatric palliative care programs on health care resource utilization and costs among children with life-threatening conditions: a systematic review of comparative studies

“…We excluded a further 3656 after screening the titles and abstracts, and retrieved 109 papers for full-text review (κ value = 0.25, 95% confidence interval [CI] 0.22-0.28, indicating fair agreement according to Fleiss 9 ). Nine articles fulfilled the inclusion criteria (Figure 1), 5,[10][11][12][13][14][15][16][17] (κ = 0.83, 95% CI 0.64-1.00, indicating almost perfect agreement). Two additional studies 18,19 were identified in the weekly automated search updates, for a total of 11 included studies.…”

“…Four cohort comparisons 11,12,14,15 used administrative data and survey techniques 14 to explore differences between cohorts of children with and without access to PPCPs. Observation periods varied, from the last day of admission before death to the referral to a PPCP.…”

“…12,15 The interventions by which children were classified as being in the PPCP group included use of a PPCP (program or hospice provider 11,15 ) or inpatient palliative care consultation. 12 One study focused on an important element of PPCP, advance care planning, as identified by parental planning of the child's location of death.…”

“…For example, one study 12 included only children who died 5 or more days after admission; the authors excluded individuals who did not choose life-extending measures to prolong their stay beyond 5 days and children who were discharged to die at home. This definition would affect both hospital admissions and costs, leaving the true difference between programs to be greater.…”

Common and Costly Hospitalizations for Pediatric Mental Health Disorders

“…In the past 5 years, .130 peerreviewed publications have used this database to study national inpatient pediatric care delivery. [16][17][18][19][20][21] We chose not to use the KID for analysis of patterns in freestanding children' s hospitals because it has a 9% missing rate for hospital type.…”