Tuesday, 22 August 2017

End-of-life Decision-Making in Neonatology: The Role of Nurses and Parents


Scientific and technical advances applied to the field of neonatology have led to the development of improved intensive care treatments for newborns at risk of increasingly complicated health problems, such as congenital malformations, hypoxic-ischemic events and, in particular, extreme prematurity. Therefore, the resuscitation of preterm infants of under 24 weeks gestation age (GA) is no longer considered exceptional in developed countries. The increase in our ability to intervene has equaled improved survival rates for these children, however the incidence of serious sequelae has not significantly decreased. In 2012, the Spanish Society of Neonatology (SENeo) published its recommendations on decision-making at the end of life in neonatology, establishing categories of patients susceptible to limitation of therapeutic effort (LTE). These categories in-clude: 1. Children born at the limit of viability (gestational age <24 weeks GA). 2. Congenital anomalies incompatible with life. 3. Children with diseases that do not respond to intensive care and who will, therefore, most likely die in a short term. 4. Children who may survive with permanent dependence on invasive life support. This categorization contrasts with the survival and sequelae data of preterm babies available at that time. In the Epicure 2 trial, conducted in England on a cohort of 952 preterm babies less than 26 weeks GA in 2006, an increase in survival in all age groups was observed, compared with the cohort of the first phase this study, collected in 1995. Thus, survival is exceptional below 23 weeks GA and survivors suffer from the most serious side effects. Between 23 and 24 weeks GA, 10% of those admitted to intensive care survived with moderate or severe disability at 6 years of age. In the 1995 cohort, survival preterm babies between 24 and 25 weeks GA receiving intensive care represented 34%, and half of the survivors had moderate or severe disabilities. In the cohort of 2006, the survival of this group increased by 12%, with no evidence of changes in morbidity. Over 25 weeks GA there has been a significant increase in survival, from 54% to 67%, among the groups studied between 1995 and 2006. The figures for survival and morbidity among different age groups does not allow for the detection of qualitative differences, and thus, gestational age becomes a criterion for establishing one of the assumptions of LTE.

A recent study published by the SEN1500 group on behalf of the Spanish Society of Neonatology (SENeo) has revealed the incidence of serious sequelae in the population of preterm infants in Spain over recent years. According to the results of this population-based study, the survival rate without major morbidity, which includes major brain damage (MBD), bronchopulmonary dysplasia (BPD), retinopathy of prematurity (ROP), necrotizing enterocolitis (NEC) and early or late onset sepsis, is 2.6% at 24 weeks GA, 5.1% at 25 weeks GA and 9.6% in babies born at 26 weeks GA. If we consider only the MBD, BPD and/or ROP, the survival without sequelae is 9.5%, 19% and 29.9% for 24, 25 and 26 weeks GA, respectively. These results show that the chances of healthy survival below 25 weeks of gestation is very low [4]. Thus we find discrepancies between the available evidence and the recommendations on the limit of viability concept.

End-of-life decision-making in the newborn population who are within the limits of viability is highly complex, with medical, ethical, social and cultural implications that impact the balance between survival and quality of life. The changing parental role in neonatal units over the final years presents a challenge to professionals who seek to include them in ethical and end-of-life decisions. Moreover, the role of the different professionals involved in patient care remains unclear, especially the role of the nurse, who is the professional who spends the most time with both the child and family. In this sense, the SENeo has issued a statement regarding the role of parents: “Parents are generally the best ‘lawyers’ of their children and in most cases wish to actively participate in end-oflife decisions, however they need information that is accurate, comprehensive, honest and understandable”. Concerning the role of the nurse, this institution states: “the importance of the participation of the nurse who is responsible for the patient in the process of deliberation and decision-making is vital, as nurses contribute towards a better understanding of the parents’ values of parents as well as the circumstances and the social and family and social context”. Because of this incoherence in the definition of the limits of viability and the indefiniteness of the different roles of the stake holders, we sought to explore the perceptions of the nursing staff in the neonatal intensive care unit (NICU) of the University Hospital La Paz in Madrid, Spain, on the process of end-oflife decision-making, focusing on aspects related to both the role of nurse and the role of parents.

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