Differences in Advance Care Planning and Circumstances of Death for Pediatric Patients Who Do and Do Not Receive Palliative Care Consults: A Single-Center Retrospective Review of All Pediatric Deaths from 2012 to 2016

Abstract

Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning (ACP) and circumstances of death in pediatric populations with a wide range of diagnoses. Objective: To determine the relationship between PPC involvement, ACP, and circumstances of death for pediatric patients. Design: A retrospective chart review of 558 pediatric patients who died between January 1, 2012 and December 31, 2016 was conducted. Descriptive statistics were used to characterize the sample. A multivariable logistic regression was used to obtain associations between PPC involvement and ACP. Setting: Large, multidisciplinary tertiary care center in a rural state. Measurements: Data abstracted for each patient included the following: demographic information, diagnosis, location of primary unit, hospice involvement, goals of care (GOC), code status, Physician Orders for Life-Sustaining Treatment (POLST) completion, and location of death. Results: Patients with PPC involvement were more likely to have had ACP addressed before death. After adjusting for covariates in the model, patients with PPC were more likely to have their GOC documented (odds ratio [OR] = 96.93), completion of POLST (OR = 24.06), do-not-resuscitate code status (OR = 7.71), and hospice involvement at the time of death (OR = 11.70) compared with those who did not receive PPC. Conclusions: Pediatric patients are more likely to have ACP addressed if they have PPC involvement. Patients with chronic complex conditions are most likely to receive palliative care.

Keywords: Physician Orders for Life-Sustaining Treatment; advance care planning; death location; pediatric palliative care.

FIG. 1.

Flowchart of study sample.^{a a}Exclusion criteria included records of stillborn infants, terminated pregnancies, miscarriages, phone consultations, records of patients seen by only adult providers, and external medical examiner cases.

FIG. 2.

Decedent patients by year of death from 2012 to 2016 by palliative care status and total.^{a a}Number of decedent patients by year of death from 2012 to 2016; patients were divided into groups based on palliative care versus nonpalliative care status.

FIG. 3.

Patient primary diagnosis by palliative care status.^{a,b,c a}Patients were categorized by primary diagnosis and subdivided into palliative care and nonpalliative care status. ^bCategory “Other” includes endocrine, gastrointestinal, genitourinary, hematologic, multiorgan system failure, renal complications, and unknown diagnoses. ^cStatistically significant at p < 0.05; reference value of neurologic diagnosis.

FIG. 4.

Primary place of care by palliative care status.^{a,b,c a}Primary place of care was identified for all patients; each patient was subdivided into palliative care and nonpalliative care status. ^bCategory “Other” includes emergency department, labor and delivery, home, and unknown primary unit. ^cStatistically significant at p < 0.05; reference value of outpatient unit.

FIG. 5.

Location of death by palliative care status.^{a,b,c a}Location of death was identified for all patients; each patient was subdivided into palliative care and nonpalliative care status. ^bCategory “Other” includes inpatient hospice, accident scene, long-term care setting, and unknown location of death. ^cStatistically significant at p < 0.05; reference value of pediatric intensive care unit.