Palliative Care Referral Patterns and Implications for Standardization in Cardiac ICU

Abstract Background Evidence suggests that pediatric palliative care (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. Methods 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. Results Fifty-four patients died during a 5-year period aged 11d – 17y (54% male). PPC consultation occurred in 74%. Retroactive application of Center to Advance Palliative Care (CAPC) guidelines, revealed 79% of patients without PPC would have qualified for consultation. Of eligible patients, 67% had PPC within 7 days of death (DOD). Of PPC patients, 50% had PPC on DOD, however for 10% this was their initial PPC. 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). Conclusions 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.