End of Life in Children on Mechanical Circulatory Support

Abstract

<h3>Purpose</h3> End of life (EOL) circumstances in children on mechanical circulatory support (MCS) remains an understudied area. Good EOL care facilitates bereavement experience and prevents complicated grief. Despite the ability of MCS to prolong survival, little is known regarding the actual EOL care on MCS, as well as the final trajectory until death. <h3>Methods</h3> Multicenter retrospective study from January 2015 to July 2020. Characteristics of death of children with heart disease requiring MCS were divided into 4 trajectories: A) early post-operative; B) persistent heart/other organ failure, C) improved, then terminal decline, and D) improved, then acute death. Patients on MCS for less than 24 hours were excluded. <h3>Results</h3> A total of 75 of 461 children died while receiving MCS. Mortality was 22/120 (18%) for VAD and 53/341 (15%) for ECMO. Overall, 54% patients were male and single ventricle congenital heart disease was the diagnosis in 14 (63%) VAD and 22 (41%) ECMO patients. The main cause of death was multi-organ failure (VAD: 86.4%, ECMO: 54%), followed by stroke (VAD: 18%, ECMO: 32%). Advanced care directives were established in 45% of patients on VAD and 51% of patients on ECMO with a mean time (SD) of 8.9 (+13.3) days for VAD and 0.78 (+1.15) for ECMO. Therapies utilized 48-hours preceding death (VAD and ECMO) included: mechanical ventilation (100% and 95.5%), fluids or nutrition (100% and 94%), dialysis (50% and 56%). The most common trajectory of death in VAD patients was C (41%), followed by D (27%); in ECMO patients, the majority sustained trajectory A (53%), followed by B (45%). Initial palliative care consultation (PC) was >8 days post MCS in 27% of VAD and 26% of ECMO patients. The average time (SD) from PC consultation to death was 67 (+31) and 8 (+11.9) days for VAD and ECMO, respectively. The average (SD) number of PC encounters was 16.4 (+12.2) and 4.1 (+5.8) on VAD and ECMO. All but one patient died in the ICU. There were no destination therapy patients. Nearly all children died immediately after or within 24 hours of withdrawal. Follow-up bereavement care was documented in 36% of VAD and 60% of ECMO patients, which in over 70% patients was provided by social workers. <h3>Conclusion</h3> Most children on MCS die in the hospital while still receiving aggressive support in the intensive care setting. Further work is needed to better understand the impact of early PC interventions and the barriers to PC interventions for children receiving MCS therapies.