End-of-Life Course and Subspecialty Palliative Care Involvement for Children on Mechanical Circulatory Support: Five-Center Retrospective Cohort Study from the United States, 2015-2020.

OBJECTIVES

To characterize end-of-life (EOL) care and subspecialty palliative care (SPC) involvement in children with heart disease supported on mechanical circulatory support (MCS), including ventricular assist devices (VADs) and extracorporeal membrane oxygenation (ECMO).

DESIGN

A multicenter retrospective study describing clinical characteristics, SPC involvement and timing, and EOL circumstances.

SETTING

Five U.S. centers.

PATIENTS: Children (< 18 yr old) with heart disease who received MCS from January 1, 2015, to July 1, 2020.

INTERVENTIONS: None.

MEASUREMENTS AND MAIN

RESULTS

Overall, 169 deaths occurred in 838 patients receiving MCS, including 23 VAD and 146 ECMO decedents. VAD patients were more likely to die after initial improvement than deterioration, whereas ECMO deaths were more likely to occur early post-cannulation or following persistent decline without improvement. Most patients died the day of MCS discontinuation (22/23 VAD and 92% of ECMO deaths). Overall, 87%, 33%, and 13% had ventilation, inotropes, or dialysis discontinued as part of the EOL process, respectively. SPC followed 72 patients (43%; 11/23 VAD and 42% of ECMO decedents). Early consult (either preimplantation or > 30 d before death) occurred in 36 patients (21%), including all VAD decedents with SPC involved. Accounting for clustering by institution, SPC involvement was associated with two times greater odds of advance care planning (ACP; 95% CI, 1.05-4.26) and lower odds of cardiopulmonary resuscitation (CPR; 0.35; 95% CI, 0.12-0.99).

CONCLUSIONS

Most pediatric deaths after MCS occur soon after discontinuation of devices while receiving invasive therapies in ICUs. SPC teams were involved in less than half of the cases, with only 21% being consulted early. SPC was associated with more ACP and less CPR at EOL. Further research is needed to better understand the barriers to, and advantages of, SPC involvement in children receiving MCS, as well as how to better identify patients who will benefit from early consultation to promote goal-concordant care.