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End-of-Life Course and Subspecialty Palliative Care Involvement for Children on Mechanical Circulatory Support:
Zasha Vazquez Colon1, Lorelei Robinson2, Dalia Lopez-Colon1
1Department of Pediatrics, Congenital Heart Center, University of Florida, Gainesville, FL.
Insights
Subspecialty palliative care (SPC) involvement in pediatric mechanical circulatory support (MCS) end-of-life care was low, with early consultation associated with more advance care planning and less cardiopulmonary resuscitation.
Area of Science:
- Pediatric Cardiology
- Critical Care Medicine
- Palliative Care
Background:
- Mechanical circulatory support (MCS) is increasingly used in children with heart disease.
- End-of-life (EOL) care in this population presents unique challenges.
- Understanding the role of subspecialty palliative care (SPC) is crucial for optimizing EOL outcomes.
Purpose of the Study:
- To characterize EOL care and SPC involvement in pediatric patients with heart disease on MCS (ventricular assist devices [VADs] and extracorporeal membrane oxygenation [ECMO]).
- To examine the timing of SPC consultation and its impact on EOL care practices.
Main Methods:
- Multicenter retrospective study of children (<18 years) with heart disease receiving MCS from 2015-2020.
- Data collected on clinical characteristics, SPC involvement, and EOL circumstances.
- Analysis of SPC consultation timing and its association with advance care planning (ACP) and cardiopulmonary resuscitation (CPR).
Main Results:
- 169 deaths occurred in 838 patients on MCS (23 VAD, 146 ECMO).
- Most deaths occurred shortly after MCS discontinuation in the ICU.
- SPC was involved in 43% of cases, with early consultation in 21%.
- SPC involvement was associated with increased ACP (OR 2.0) and decreased CPR (OR 0.35).
Conclusions:
- Pediatric deaths post-MCS often occur rapidly after device discontinuation amidst intensive care.
- SPC involvement is suboptimal, with limited early consultations.
- Early SPC consultation is linked to improved ACP and reduced CPR, highlighting its benefit in goal-concordant EOL care.
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.
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