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Most deaths in CPCCRN-affiliated PICUs occur after life support has been limited or withdrawn.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.