Objective: The objective of this study was to document the frequency of pediatric resident experiences with end-of-life care for children and the educational context for these experiences, as well as to determine whether residents deem their preparatory training adequate.
Methods: An Internet-based survey was distributed to all categorical pediatric residents at the Johns Hopkins Children's Center. Survey items asked residents to (1) quantify their experiences with specific responsibilities associated with the death of a pediatric patient, (2) identify their educational experiences, and (3) respond to Likert scale statements of, "I feel adequately trained to... ." The responsibilities were discussion of withdrawal/limitation of life-sustaining therapy, symptom management, declaration of death, discussion of autopsy, completion of a death certificate, seeking self-support, and follow-up with families.
Results: Forty (50%) of 80 residents completed the survey. Residents had been present for a mean (+/- SD) of 4.7 (+/- 3.0) patient deaths. More than 50% of residents had participated in discussions of withdrawal/limitation of life-sustaining therapy, symptom management, completing a death certificate, and seeking personal support; however, <50% of residents had been taught how to hold discussions of withdrawal/limitation of life-sustaining therapy, declare death, discuss autopsy, complete a death certificate, and have follow-up with families. Residents did not feel adequately trained in any of these areas.
Conclusion: Pediatric residents have limited experience with pediatric end-of-life care and highly varied educational experiences and do not feel adequately trained to fulfill the responsibilities associated with providing end-of-life care for children. Overall, this perception does not improve with increased level of training. This study identifies several target areas for curricular intervention that may ultimately improve the end-of-life experience for our pediatric patients and their families and the young physicians who care for them.