Publications

End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study

 

Objectives

Most pediatric patients on ventricular assist device (VAD) survive to transplantation. Approximately 15% will die on VAD support, and the circumstances at the end-of-life are not well understood. We, therefore, sought to characterize patient location and invasive interventions used at the time of death.

Design

Retrospective database study of a cohort meeting inclusion criteria.

Setting

Thirty-six centers participating in the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Registry.

Patients

Children who died on VAD therapy in the period March 2012 to September 2021.

Measurements and Main Results

Of the 117 of 721 patients (16%) who died on VAD, the median (interquartile range) age was 5 years (1-16 yr) at 43 days (17-91 d) post-implant. Initial goals of therapy were bridge to consideration for candidacy for transplantation in 60 of 117 (51%), bridge to transplantation in 44 of 117 (38%), bridge to recovery 11 of 117 (9%), or destination therapy (i.e., VAD as the endpoint) in two of 117 (2%). The most common cause of death was multiple organ failure in 35 of 117 (30%), followed by infection in 12 of 117 (10%). Eighty-five of 92 (92%) died with a functioning device in place. Most patients were receiving invasive interventions (mechanical ventilation, vasoactive infusions, etc.) at the end of life. Twelve patients (10%) died at home.

Conclusions

One-in-six pediatric VAD patients die while receiving device support, with death occurring soon after implant and usually from noncardiac causes. Aggressive interventions are common at the end-of-life. The ACTION Registry data should inform future practices to promote informed patient/family and clinician decision-making to hopefully reduce suffering at the end-of-life.

This ACTION study was published in Pediatric Critical Care Medicine on January 1, 2023. Congratulations to the authors:

  • Seth A Hollander
  • Kimberly A Pyke-Grimm
  • Muhammad F Shezad
  • Farhan Zafar
  • Melissa K Cousino
  • Chris Feudtner
  • Danton S Charr
CITATION

Hollander SA, Pyke-Grimm KA, Shezad MF, Zafar F, Cousino MK, Feudtner C, Char DS. End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study. Pediatr Crit Care Med. 2023 Jan 1;24(1):41-50. doi: 10.1097/PCC.0000000000003115. Epub 2022 Nov 16. PMID: 36398973.