NURSE SCIENTIST Stanford Medicine Childrens Hosptial Stanford, California, United States
Background: Daunting challenges inhibit the provision of optimal pediatric palliative care (PPC) for children with advanced heart failure who have implanted ventricular assist devices (VAD), including when deteriorating health status raises 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. As adverse events from VAD (such as stroke, bleeding, infection, and end-organ failure) reduce patients’ quality of life, families and providers question the desirability of continuing. Given the rapidly rising use of VAD in pediatrics, pediatric-specific guidelines are urgently needed. This study examined how CD is envisioned, decided upon, and implemented. Objective: To examine how pediatric heart failure clinicians experience and perceive the practical, psychosocial, and ethical challenges of CD. Design/Methods: We conducted a qualitative, grounded theory study of clinicians from a quaternary-level heart failure program (among the top 5 highest-volume programs nationally) with VAD experience in children including high-risk populations. We used a semi-structured interview guide focused on the decision of CD, challenges around CD, reflections on cases that did or did not go well, the CD process, and the role of PPC. Constant comparison analysis was conducted. Results: Eighteen clinicians (6 nurses, 1 social worker, 4 cardiologists, 1 anesthesiologist, 3 intensivists and 3 surgeons) were interviewed. Half were female and half had more than 10 years of experience. Clinicians identified key factors influencing making the CD decision including the patient’s clinical status and expected future course, and patient/family wishes. Consensus agreement was important for CD and strategies included collective discussions among staff, care team meetings where family were included in clinical discussions and decision making, and involving PPC. Moral and emotional distress experienced by staff centered on witnessing suffering, grief triggered by relationships with patients/families, and discord around CD.
Conclusion(s): Findings provide a theoretical conceptualization to describe the process clinicians use in navigating and managing CD-VAD, and some initial recommendations such as earlier involvement of PPC. Understanding the challenges posed by CD is a necessary first step in the development of guidance to support managing these challenges and benefit pediatric heart failure patients, their families, and clinicians by enhancing VAD therapy and when appropriate, CD.
