DOI:10.1590/S1807-59322011000900011 CLINICS 2011;66(9):1569-1572 CLINICAL SCIENCE End of life in the neonatal intensive care unit Helena Moura,I Vera Costa,II Manuela Rodrigues,II Filipe Almeida,III Teresa Maia,II Hercı´lia Guimara˜ esII,III I Servic¸o de Neonatologia do Centro Hospitalar Porto, Porto/Portugal. II Servic¸o de Neonatologia do Hospital S a˜o Joa˜ o E.P.E, Porto/Portugal. III Faculdade de Medicina do Porto, Porto/Portugal. PURPOSE: Death at the beginning of life is tragic but not uncommon in neonatal intensive care units. In Portugal, few studies have examined the circumstances surrounding the final moments of neonates. We evaluated the care given to neonates and their families in terminal situations and the changes that had occurred one decade later. DESIGN AND METHODS: We analyzed 256 charts in a retrospective chart review of neonatal deaths between two periods (1992-1995 and 2002-2005) in a level III neonatal intensive care unit. RESULTS: Our results show differences in the care of dying infants between the two periods. The analysis of the 2002-2005 cohort four years revealed more withholding and withdrawing of therapeutic activities and more effective pain and distress relief; however, on the final day of life, 95.7% of the infants received invasive ventilatory support, 76.3% received antibiotics, 58.1% received inotropics, and 25.8% received no opioid or sedative administration. The 2002-2005 cohort had more spiritual advisor solicitation, a higher number of relatives with permission to freely visit and more clinical meetings with neonatologists. Interventions by parents, healthcare providers and ethics committees during decision-making were not documented in any of the charts. Only eight written orders regarding therapeutic limitations and the adoption of palliative care were documented; seven (87.5%) were from the 2002-2005 cohort. Parental presence during death was more frequent in the latter four years (2002-2005 cohort), but only 21.5% of the parents wanted to be present at that moment. CONCLUSION: Despite an increase in the withholding and withdrawing of therapeutic activities and improvements in pain management and family support, many neonates still receive curative and aggressive practices at the end of life. KEYWORDS: Neonatal death; NICU; End of life; Ethics in neonatology; Intensive care. Moura H, Costa V, Rodrigues M, Almeida F, Maia T, Guimara˜ es H. End of life in the neonatal intensive care unit. Clinics. 2011;66(9):1569-1572. Received for publication on February 25, 2011; First review completed on April 26, 2011; Accepted for publication on May 25, 2011 E-mail: herciliaguimaraes@gmail.com Tel.: +351 919317720 INTRODUCTION Recent advances in prenatal and neonatal care have increased the survival of many infants who, in previous decades, would not have been treated because of a presumed lack of viability. A significant number of extremely preterm infants and newborns with lethal congenital malformations or lethal chromosomal anomalies still face terminal illnesses in the neonatal intensive care unit (NICU).1 More infants die in the first 28 days of life than during any other period of childhood, and neonatal palliative care is rarely offered.2 When science and technology are insufficient for the rehabilitation and cure of certain neonatal diseases, intensive treatments may be either inappropriate or inhumane. Physicians and nurses frequently are willing to withhold additional treatment and withdraw life support when the infant is severely injured or marginally viable, when death is imminent, or when further medical interventions would only Copyright 2011 CLINICS – This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http:// creativecommons.org/licenses/by-nc/3.0/) which permits unrestricted non- commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. 1569 prolong pain and suffering.3-9 However, the treatment decisions for children with life-limiting conditions often involve ethical, moral, legal, and emotional conflicts between the parties involved in decision making. Neonatal physiolo- gical resilience complicates predicting survival and out- comes, and no one wants to give up fighting for a child’s opportunity to live. Caregivers and parents tend to cease- lessly extend the process of dying, with exponential costs in the form of pain, suffering, and loneliness.10,11 End-of-life care requires holistic and consistent support of the family. The knowledge and communication skills of the medical caregivers can greatly influence the ability of the parents to effectively cope with their loss around the time of death and after returning to their home.12 Understanding how these infants and families are treated in the final moments of an infant’s short life can provide accurate information that can lead to the development of an action plan for accurate policies, educational practices, and research. STUDY DESIGN AND METHODS In this study, we evaluated the care given to neonates and their families in terminal situations and compared the