Palliative Care Referral Patterns and Implications for Standardization in Cardiac ICU

Evidence suggests that pediatric palliative care involvement (PPC) is beneficial to medically complex patients. Historically, PPC involvement has been overlooked or delayed and varies by institution but PPC awareness has increased in cardiovascular ICUs (CVICU) and so we investigated frequency and timeliness of PPC referral for patients dying in ICU. Retrospective study of pediatric cardiac patients experiencing death in ICU to review PPC presence and timing of initial PPC, most recent PPC, and interventions, therapies, CPR, and presence of do-not-resuscitate DNR discussion. Fifty-four patients died during a 5-year period aged 11d-17y (54% male). PPC involvement occurred in 40/54 (74%). Of those patients without PPC, the Center to Advance Palliative Care (CAPC) guidelines would have supported PPC in 11/14 (79%). DNR discussion was more likely in PPC patients (63% vs 14%; p = 0.0011), though often only on DOD. Comparing prior to DOD, PPC patients were still more likely to have DNR discussion (55% vs 0%; p = 0.0003). PPC patients were no less likely to have CPR on DOD (28% vs 43%, p = 0.29). PPC occurred frequently in patients experiencing death in CVICU. However, frequently the initial PPC occurred within a week or day of death. Patients without PPC would often qualify under published guidelines. Standardization, timing, and patient identification for PPC will expand efficacy in CVICU.