Bereaved Caregiver Perspectives on Implantation and End of Life in Pediatric Ventricular Assist Device Patients

Abstract

<h3>Purpose</h3> Ventricular assist devices (VADs) are increasingly used in pediatric patients with heart failure as a bridge to heart transplant, though approximately 3-12% will die on support. The patient and family perspectives of pediatric VAD implantation, deactivation, and end-of-life experience are not well described. <h3>Methods</h3> Semi-structured interviews were performed with caregivers of pediatric VAD patients who died from 2014-2020. Analysis was performed using a grounded theory framework: interviews were coded by two independent readers using Dedoose software, and themes derived from codes were discussed in iterative meetings using established qualitative analysis methods. Caregivers were screened for adverse psychological reactions by a psychologist during interviews and at one-week follow up. <h3>Results</h3> Six of 18 eligible families participated in interviews at a median 2.4 years after their child died. Four major themes emerged. Five of six families did not regret their decision for VAD implant despite the child's death. Caregiver-child accord (via verbal consent or cues from the child's physical state) at implant and end of life was associated with lack of regret. Perceived cues from the child about readiness to die were often more impactful in families' decisions for VAD deactivation than medical provider recommendation. Moreover, the development of a surrogate local "family" composed of the medical team (VAD providers, nurses, social workers) and other patient families provided powerful support to these families, equal or above that of the extended family or palliative care service. Though caregiver coping styles differed widely, they did not spontaneously report persistent symptoms of post-traumatic stress or depression. <h3>Conclusion</h3> This qualitative study of bereaved caregivers of pediatric VAD patients demonstrates that accord between the child and family is an important component of caregiver decision-making in VAD implantation and deactivation. Local surrogate support systems and longitudinal medical providers often play a meaningful role for caregivers at a child's end of life, sometimes more so than remote families or palliative care. A better understanding of the caregiver perspective should inform VAD programs' approach to implantation and end-of-life conversations to promote quality decision-making and bereavement.