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End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study
Seth A Hollander1, Kimberly A Pyke-Grimm2, Muhammad F Shezad3
1Department of Pediatrics (Cardiology), Stanford University, Palo Alto, CA.
Insights
About 16% of pediatric patients on ventricular assist devices (VAD) die during support, often from noncardiac causes soon after implantation. Aggressive end-of-life interventions are common, highlighting the need for better decision-making to reduce suffering.
Area of Science:
- Pediatric cardiology
- Mechanical circulatory support
- Palliative care
Background:
- Most pediatric patients receiving ventricular assist devices (VADs) survive to heart transplantation.
- However, approximately 15% of these children die while on VAD support.
- The circumstances surrounding end-of-life care for these patients are not well understood.
Purpose of the Study:
- To characterize the patient location and invasive interventions at the time of death for pediatric patients on VAD support.
- To identify patterns and common causes of death in this vulnerable population.
- To inform future clinical practices and improve end-of-life care.
Main Methods:
- Retrospective database study utilizing data from the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Registry.
- Inclusion criteria focused on pediatric patients who died while on VAD therapy between March 2012 and September 2021.
- Data collected included patient demographics, VAD support goals, cause of death, and interventions at end-of-life.
Main Results:
- Out of 721 patients, 117 (16%) died on VAD support, with a median age of 5 years.
- The most frequent initial goals of therapy were bridge to candidacy (51%) and bridge to transplantation (38%).
- Leading causes of death were multiple organ failure (30%) and infection (10%), with most patients dying with a functioning device and receiving invasive interventions; 10% died at home.
Conclusions:
- A significant proportion of pediatric VAD patients (16%) die during device support, often from noncardiac causes and relatively soon after implantation.
- Aggressive medical interventions are frequently employed at the end-of-life in this population.
- These findings underscore the need for improved patient and family counseling and decision-making processes to potentially mitigate suffering during end-of-life care.
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.
Interventions:
None.
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) postimplant. 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.
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