Each year, approximately 18,700 infants die due to prematurity, congenital anomalies and other illnesses (March of Dimes, 2001). For families and healthcare providers of these infants, end-of-life care is particularly challenging. Neonatal loss represents an abrupt end to the hopes and dreams of expectant parents. For health care providers, end-of-life care is emotionally, clinically and ethically challenging. Although past research indicates a strong influence of end-of-life care on long-term parental grieving, few studies have explored experiences of families and healthcare professionals from withdrawal of life-sustaining treatment through death. Further, no studies have combined these explorations to create a broader, multi-faceted view of end-of-life care in the NICU. The purpose of this phenomenological study is to gain a rich understanding of end-of-life care in the NICU by combining and comparing experiences of parents and nurses, including an exploration of ethical dimensions of dying in the NICU.
The specific aims of this study are to: 1) explore the experience of parents of dying infants in the NICU during the time from withdrawal of life-sustaining treatment until death, 2) explore ethical dimensions of NICU nurses' experience who provide end-of-life care to these infants during this same time, and 3) compare experiences of nurses and parents to examine similarities and differences in their views of end-of-life care. This study is important because it will provide a clearer picture of the nurse's role in end-of-life care and the parent's interpretation of that role. Further, it may elucidate aspects of nurses' ethical practice for infants and families during this tragic time.
| Gingell Epstein, Elizabeth (2010) Moral obligations of nurses and physicians in neonatal end-of-life care. Nurs Ethics 17:577-89 |
| Epstein, Elizabeth Gingell; Hamric, Ann Baile (2009) Moral distress, moral residue, and the crescendo effect. J Clin Ethics 20:330-42 |
| Epstein, E G (2008) End-of-life experiences of nurses and physicians in the newborn intensive care unit. J Perinatol 28:771-8 |
