University of Michigan Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Ann Arbor, United States of America; Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI, United States of America. Electronic address: [Email]
OBJECTIVE : Though provider and patient perceptions of death are characterized in the adult population literature, there is limited information related to providers' perceptions in pediatric and neonatal patients. The purpose of this study was to better understand how interprofessional care team members perceive and experience neonatal and pediatric end-of-life situations. METHODS : This survey questionnaire was administered to interprofessional providers following their participation in an institutional workshop, as part of an ongoing institutional effort to improve end-of-life experiences for patients/family and providers. Interprofessional care providers completed an electronic survey consisting of closed-ended and one open-ended question to elicit their perceptions of their participation in end of life care for a recent neonatal/pediatric patient in the period before the child's death. RESULTS : The qualitative analysis of 306 free-text responses commenting on the deaths of 138 patients, contained within 880 completed mixed-method surveys, is described. Thematic analysis of the free text discovered three primary themes from the data: favorable aspects of the death experience, unfavorable aspects of the experience, and combined favorable and unfavorable aspects. Four subthemes contributed to the themes; namely, language, parental presence, trust/rapport in provider relationships and inclusion in decision-making, communication, and culture. CONCLUSIONS : Multiple factors contribute to how interprofessional care providers perceive end-of-life care experiences for neonatal/pediatric patients. The same death may be perceived differently by different providers. CONCLUSIONS : Understanding favorable and unfavorable aspects of providing end-of-life care will support strategies to provide resources, education and support to facilitate coping and resiliency in care providers.