94: An Organizational Ethics Model of Roles, Challenges, and Quality Indicators of End-of-Life Care in the Neonatal Intensive Care Unit (NICU)

Abstract

Background: Quality of care during decision-making and at end-oflife influences how parents cope with neonatal death. Associated moral distress affects individuals and an organization's ethical climate. Objectives: To explore the challenges of meeting parents' and infants' needs in end-of-life care and decision-making in the NICU. Design/Methods: Thirty-six semi-structured interviews were undertaken with 43 health care workers (HCW) from one tertiary Canadian NICU: 23 nurses, five neonatologists, five residents, three social workers, two fellows, two nurse practitioners, two chaplains, and one dietician. Questions (developed by a multidisciplinary research team including parents) probed for HCW's experiences, perception of parent needs, and challenges to providing quality end-of-life care. Recorded interviews were transcribed, thematic analysis performed with triangulation of themes across investigators, and an organizational ethics model of end-of-life care evolved. Results: Figure 1 depicts an organizational model of roles, challenges, and quality indicators of end-of-life care based on HCW themes. The ability to meet parents' and infants' needs were influenced by intrinsic and extrinsic factors related to HCW's roles and perception of team function. These were influenced by prior experiences and training, personal and societal values, and situational context. Similarly, indicators of quality care were both intrinsic (self-satisfaction) and extrinsic (parent feedback). Consequences of poor quality of care resulted in 'harm' to both families and HCWs. Finally, lack of institutional supports and resources were barriers to care (Figure 1). Conclusions: An organizational model identifying HCW roles and challenges in providing quality end-of-life care was developed through stakeholder interviews. This model may guide institutional identification of quality indicators and inform the development of policies and programs aimed toward improving end-of life care practices. (Figure presented) .