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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