REGULAR ARTICLE End of life, death and dying in neonatal intensive care units in Latin America CA Fajardo (carlos.fajardo@albertahealthservices.ca) 1,2 , S González 3 , G Zambosco 4 , MJ Cancela 5 , LV Forero 6 , M Venegas 6,7 , H Baquero 6,8 , L Lemus-Varela 9 , J Kattan 10 , F Wormald 10 , A Sola 1 , J Lantos 1,11 1.SIBEN Study Group ETISIBEN 2.University of Calgary, Alberta, Canada 3.Hospital San Martin, La Plata, Argentina 4.Hospital Italiano, La Plata, Argentina 5.Hospital Pereira Rossell, Montevideo, Uruguay 6.Hospital Universidad del Norte, Barranquilla, Colombia 7.Hospital Nin ˜ o Jesu ´ s, Barranquilla, Colombia 8.Clı ´nica Santa Mo ´ nica, Barranquilla, Colombia 9.Hospital Real San Jose ´ , Guadalajara, Me ´ xico 10.Facultad de Medicina, Pontificia Universidad Cato ´ lica de Chile, Santiago, Chile 11.Children’s Mercy Bioethics Center, Children’s Mercy Hospital Kansas City, MO, USA Keywords Bioethics, End of life, Iberoamerican Society of Neonatology, Neonatal death, Withdrawing of care, Withholding of care Correspondence Carlos Alfonso Fajardo, Division of Neonatology, Foothills Hospital Centre, Suite 780, 1403 29th Street NW, Calgary, Alberta T2N 2T9, Canada. Tel: +403-943-4892 | Fax: +403-943-2565 | Email: carlos.fajardo@albertahealthservices.ca Received 10 November 2011; revised 29 December 2011; accepted 9 January 2011. DOI:10.1111/j.1651-2227.2012.02596.x ABSTRACT Aim: Most analyses of end of life decisions in Neonatal Intensive Care Units (NICUs) have come from Europe / English-speaking countries. Would decisions be different in Latin American NICUs? Therefore, we aim to evaluate the approach to dying infants / families in NICUs in Latin America. Methods: Multinational descriptive study of all deaths in babies born at >22 weeks in eight NICUs in five Latin American countries. Deaths were categorized as: (i) no Cardio- pulmonary Resuscitation (CPR) or life support offered; (ii) life support initiated but do not resuscitate (DNR) orders written or no CPR provided; (iii) full life support and CPR; and (iv) unclassifiable. Results: There were 100 deaths, 81% in >27 weeks. Seventeen infants received no CPR / life support at birth, 10 died in DR and seven in NICU. There were 27 infants in group 2, 54 in group three and two in group 4. No baby had care withdrawn or care with- drawn / CPR withheld. Thirty-two infants had ‘do not resuscitate’ order. Decisions without parents’ involvement in 15%, both parents present at death 24% and sedatives / narcotics documented 14%. Conclusions: Latin American NICUs differ from those in Northern Europe / English- speaking countries. More deaths are accompanied by full life support and CPR. DNR orders are rare. Withdrawal of life support is virtually non-existent. Latin American’s doctors are more likely to make decisions without the objections of family about withholding life-sustaining treatment. INTRODUCTION End of life care takes place in specific cultural contexts. Much of the published research on end of life decisions in neonatal intensive care comes from the United States, Can- ada and Europe. Little is known about similar phenomena in other parts of the world (1–7). Most countries in Latin America share a common lan- guage and a common historical and religious heritage. Each has a different health care system and different legal over- sight of medical decisions. There are vast differences in the environments in which critically ill infants are born and Abbreviations CPAP, Continuous positive airway pressure; CPR, Cardiopulmo- nary Resuscitation; DNR, Do not resuscitate; ECMO, Extracor- poreal membrane oxygenation; IMV, Intermittent mandatory ventilation; LA, Latin America; NICU, Neonatal Intensive Care Unit; SIBEN, Iberoamerican Society of Neonatology. Key notes • This multinational descriptive study of all deaths in babies born at >22 weeks in eight NICUs of five Latin American countries showed that these NICUs differ from those in Northern Europe / English-speaking countries. More deaths are accompanied by full life support and CPR. DNR orders are rare, and withdrawal of life support is virtually non-existent. Latin American’s doctors are more likely to make decisions without the objections of family about withholding life-sustaining treatment. Acta Pædiatrica ISSN 0803–5253 ª2012 The Author(s)/Acta Pædiatrica ª2012 Foundation Acta Pædiatrica 2012 101, pp. 609–613 609