Introduction: Deteriorating health states complicate the provision of optimal pediatric palliative care (PPC) for children with implanted ventricular assist devices (VAD), including the consideration of compassionate deactivation (CD) of the VAD. From VAD placement onwards, families and clinicians often have differing perspectives, and pediatric CD-VAD poses practical, psychosocial, and ethical concerns. Consensus guidelines are needed for involvement of PPC in VAD care, including during CD-VAD. Methods: We conducted a modified Delphi process with an inter-disciplinary panel of 15 national experts in pediatric heart failure, pediatric palliative care, ethics, and a parent representative. We identified 16 articles through a structured literature review. Participants then generated candidate recommendations based on the reviewed articles, their clinical experience, and 4 de-identified clinical cases. Participants graded article quality and recommendation strength using Grading of Recommendations Assessment, Development, and Evaluation (GRADE) frameworks. Panelists voted on candidate recommendations to identify consensus, defined as over 70% agreement. Results: Our panel generated 27 consensus recommendations within two rounds of sequential surveys and inter-survey deliberation. All participants completed both rounds. Recommendations covered the full course of VAD care; they address programmatic and structural factors, pre-implantation, care during VAD therapy, considerations for CD, the deactivation process itself, and post-CD care. The recommendations are applicable across a range of institutions and geographic regions. Conclusions: These recommendations fill a significant gap in existing guidance and offer a framework for consistent, ethically grounded care for children and families navigating VAD, including when CD-VAD is appropriate. Available literature on pediatric CD-VAD is sparse and needed to be supplemented with de-identified clinical cases; additional research on CD-VAD in this population is needed. Consensus guidelines will equip front-line clinical teams to feel more secure in their management of this challenging phase of VAD care.
Gal et al. (Sun,) studied this question.