Heart failure is a life-changing diagnosis for a child and their family. Pediatric patients with heart failure experience significant morbidity and frequent hospitalizations, and many require advanced therapies such as mechanical circulatory support and/or heart transplantation. Pediatric palliative care is an integral resource for the care of patients with heart failure along its continuum. This includes support during the grief of a new diagnosis in a child critically ill with decompensated heart failure, discussion of goals of care and the complexities of mechanical circulatory support, the pensive wait for heart transplantation, and symptom management and psychosocial support throughout the journey. In this article, we discuss the scope of pediatric palliative care in the realm of pediatric heart failure, ventricular assist device (VAD) support, and heart transplantation. We review the limited, albeit growing, literature in this field, with an added focus on difficult conversation and decision support surrounding re-transplantation, HF in young adults with congenital heart disease, the possibility of destination therapy VAD, and the grimmest decision of VAD de-activation.

Patients with perinatal and neonatal congenital heart disease (CHD) represent a unique population with higher morbidity and mortality compared to other neonatal patient groups. Despite an overall improvement in long-term survival, they often require chronic care of complex medical illnesses after hospital discharge, placing a high burden of responsibility on their families. Emerging literature reflects high levels of depression and anxiety which plague parents, starting as early as the time of prenatal diagnosis. In the current era of the global COVID-19 pandemic, the additive nature of significant stressors for both medical providers and families can have catastrophic consequences on communication and coping. Due to the high prognostic uncertainty of CHD, data suggests that early pediatric palliative care (PC) consultation may improve shared decision-making, communication, and coping, while minimizing unnecessary medical interventions. However, barriers to pediatric PC persist largely due to the perception that PC consultation is indicative of “giving up.” This review serves to highlight the evolving landscape of perinatal and neonatal CHD and the need for earlier and longitudinal integration of pediatric PC in order to provide high-quality, interdisciplinary care to patients and families.

Background: Implicit bias pervades health care, decreases quality of care, and disproportionately affects health outcomes for persons of color. Little is known about the use of biased language in the care of seriously ill children as documented in the electronic health record (EHR). Objective: To describe the use of biased language in the EHR of critically ill pediatric patients and to assess if there is a difference based on patient demographics and clinical characteristics. Setting/Participants: A retrospective review of EHRs was conducted on patients admitted to a Pediatric Intensive Care Unit (PICU) with a palliative care consult at a large, urban academic center in the United States in 2019. Measurements: Demographics and clinical characteristics were compared between patients with and without biased language in their EHR in univariate and multivariate analyses. Frequencies of descriptor usage and health care team members using the descriptor were recorded. Exemplar quotes using biased language were recorded. Results: In 63 patients, no differences were found in demographic or clinical characteristics between patients with and without positively and negatively biased language. In adjusted analysis, there was no effect of demographics or clinical characteristics on the odds of having at least 1 instance of negatively biased language. Physicians and social workers used more biased language than other health care team members. Conclusion: Despite no statistically significant difference noted in this pilot study, linguistic biases exist in the EHR of seriously ill children, which may lead to testimonial injustice. Efforts to combat bias and racism in pediatric health care documentation may focus on revising note templates and educating across disciplines.