Compassionate deactivation of ventricular assist devices in children: A survey of pediatric ventricular assist device clinicians’ perspectives and practices

Abstract

Objectives This study's objective was to investigate compassionate ventricular assist device deactivation (VADdeact) in children from the perspective of the pediatric heart failure provider. Background Pediatric VAD use is a standard therapy for advanced heart failure. Serious adverse events may affect relative benefit of continued support, leading to consideration of VADdeact. Perspectives and practices regarding VADdeact have been studied in adults but not in children. Methods A web‐based anonymous survey of clinicians for pediatric VAD patients (<18 years) was sent to list‐serves for the ISHLT Pediatric Council, the International Consortium of Circulatory Assist Clinicians Pediatric Taskforce, and the Pediatric Cardiac Intensivist Society. Results A total of 106 respondents met inclusion criteria of caring for pediatric VAD patients. Annual VAD volume per clinician ranged from <4 (33%) to >9 (20%). Seventy percent of respondents had performed VADdeact of a child. Response varied to VADdeact requests by parent or patient and was influenced by professional degree and region of practice. Except for the scenario of intractable suffering, no consensus on VADdeact appropriateness was reported. Age of child thought capable of making informed requests for VADdeact varied by subspecialty. The majority of respondents (62%) do not feel fully informed of relevant legal issues; 84% reported that professional society supported guidelines for VADdeact in children had utility. Conclusion There is limited consensus regarding indications for VADdeact in children reported by pediatric VAD provider survey respondents. Knowledge gaps related to legal issues are evident; therefore, professional guidelines and educational resources related to pediatric VADdeact are needed.

Variability in clinical decision‐making for ventricular assist device implantation in pediatrics

“…The sample size is small with a 49% response rate, though the pediatric VAD community itself is relatively small and there was representation from centers across North America at varying sized programs. While response rate was moderate, it exceeds similar physician surveys in pediatric cardiology, with some surveys not reporting a response rate 10,30,31 . Multiple respondents per center were permitted; therefore, larger centers may be over‐represented in the survey results.…”

“…Only half of respondents reported discussing the possibility of compassionate deactivation in the setting of a devastating clinical event. Given the risk of mortality on device and high risk of adverse events, early and transparent dialogue with families is essential in providing compassionate end‐of‐life care as highlighted by several pediatric VAD reports and reviews 10,22‐26 . In terms of involvement of mature minors, while a majority of respondents reported involving them in the entire consent process, still 23% reported that not all risks were reviewed with them.…”

“…While response rate was moderate, it exceeds similar physician surveys in pediatric cardiology, with some surveys not reporting a response rate. 10,30,31…”

“…9 Furthermore, there are minimal data on actual practice patterns of pediatric providers who manage children with end-stage heart failure being considered for VAD support. 5,10 The objective of this study was to identify areas and degrees of consensus/variability among VAD physicians in the eligibility of pediatric patients being considered for VAD support and to understand the strongest factors that guide respondents' decision-making. Our primary aim was to describe the opinions and current practice of pediatric VAD physicians (ie, both heart transplant cardiologists and cardiothoracic surgeons) using clinical vignettes to highlight clinical decision-making in determining a patient's VAD eligibility.…”

“…Guidelines for mechanical circulatory support exist in the adult literature 7,8 ; however, there is limited literature and no recent consensus documents for decision‐making with regard to VAD support in pediatrics 9 . Furthermore, there are minimal data on actual practice patterns of pediatric providers who manage children with end‐stage heart failure being considered for VAD support 5,10 …”