Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients.

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.

Fostering self-determination of bedside providers to promote active participation in rapid response events.

BACKGROUND: Widespread implementation of rapid response (RR) systems positively impacts outcomes of clinically unstable hospitalized patients. Collaboration between bedside providers and specialized responding teams is crucial for effective functioning of RR system. Bedside, providers often harbor negative feelings about having to 'call for help' that could impact their active participation in RR. OBJECTIVE: The objective of the study is to enhance active participation of bedside providers in RR by fostering self-determination through targeted education. DESIGN: Needs assessment affirmed that bedside providers in our tertiary academic pediatric hospital felt loss of control over patient care, lack of competence, and disconnect from the RR team. We used the principles of autonomy, competence, and relatedness posited by the self-determination theory to guide the development, implementation, and evaluation of our educational program for bedside providers. RESULTS: Forty-two bedside providers participated in our program. Participants reported significant improvement in RR-related clinical knowledge. More importantly, there was significant enhancement in individual perceptions of autonomy (pre-mean: 2.12, post-mean: 4.4) competence (pre-mean: 2.15, post-mean: 4.4), and relatedness (pre-mean: 2.65, post-mean: 4.5) with RR (p < 0.01). The evaluation results for overall educational effectiveness showed a mean score of 4.69 ± 0.79. All scores were based on a 5-point Likert scale of 1: poor to 5: excellent. Educators noted good participant engagement. The program's structure, evaluations, and data management were modified based on the feedback. CONCLUSIONS: We successfully developed and implemented targeted educational program for bedside providers based on self-determination theory. The evaluations showed improvement in bedside providers' clinical RR knowledge and perceptions of autonomy, competence, and relatedness following the training.