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Abstract
Objective To describe the opinions of paediatricians who teach resuscitation in Brazil regarding resuscitation practices in the delivery room (DR) of preterm infants with gestational ages of 23–26 weeks.
Methods Cross-sectional study with an internationally validated electronic questionnaire (December 2011–September 2013) sent to the instructors of the Neonatal Resuscitation Program of the Brazilian Society of Paediatrics on parental counselling practices, medical limits for resuscitation of extremely preterm infants and medical considerations for decision-making in this group of infants. The analysis was descriptive.
Results Among 685 instructors, 560 (82%) agreed to participate. Only 5%–13% reported having opportunity for antenatal counselling parents: if called, 22% reported discussing with the family about the possibility not to resuscitate in the DR; 63% about the possibility of death in the DR and 89% about the possibility of death in the neonatal unit. If the parents did not agree with the advice of the paediatrician, 30%–50% of the respondents would follow the procedures they advised regardless of the opinion of the parents. The higher the gestational age, the lower is the percentage of paediatricians who believed that parents should participate in decision-making. Only 9% participants reported the existence of written guidelines at their hospital on initiation of resuscitation in the DR at limits of viability, but 80% paediatricians reported using some criteria for limiting resuscitation in the DR.
Conclusion The picture obtained in this study of Brazilian paediatricians indicates that resuscitation of extremely preterm infants is permeated by ambivalence and contradictions.
- Clinical Ethics
- Decision-making
- End-of-life
- Neonatology
- Perinatal mortality
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Introduction
Management of neonates born before 26 weeks of gestational age (GA) is controversial.1–6 Professionals working in neonatal intensive care (NICU) and parents of extremely preterm infants at the limit of viability are faced with complex and abstract questions that require specific, immediate and inevitable answers,7 such as “Which newborns are so immature that they should not be resuscitated?”; “Should the future quality of life of the newborn be considered when deciding the course of action to be taken?”; “Who should participate and what criteria should be used in decision-making?” and “When and how should the decisions on the initiation or maintenance of intensive neonatal care versus comfort care be made?”8–11
In Brazil, 80% of the deliveries occur in public hospitals, that is, families do not have to directly pay for the delivery and neonatal care.12 Regarding Brazilian mortality and morbidity, a study of 2646 neonates with GA of 23–33 weeks, with birth weight (BW) of ≥400 g and with absence of malformations showed that 30% die in the hospital and 53% die or survive with major pulmonary or central nervous system morbidities.13
The Brazilian Neonatal Resuscitation Program (Brazilian NRP) recommends that neonates between 22 and 23 weeks have a limited viability for extrauterine life and the decision not to resuscitate can be made by the delivery room (DR) team or, in case of doubt, the team should resuscitate the neonate patient, take him or her to the NICU and then gather the necessary information, including family opinions, to eventually limit life-support measures. Above 23 weeks, families should be consulted, but resuscitation is, in general, indicated.14
Decisions on DR resuscitation have not been addressed in the context of Brazilian medicine. Therefore, this study aimed to assess the opinions of paediatricians who serve as instructors in the Brazilian NRP on the ethical issues involved in resuscitation of preterm infants born between 23 and 26 weeks of gestation.
Methods
After approval by the Research Ethics Committee of the Federal University of São Paulo and by the Executive Board of the Brazilian Society of Paediatrics, this cross-sectional study involving all paediatricians who served as active instructors of the Brazilian NRP was conducted between December 2011 and September 2013, after the release of 2010 guidelines by Brazilian NRP in April 2011.
An electronic questionnaire was developed based on Martinez et al15 aiming to evaluate parental counselling practices, clinical limits for resuscitation of extremely preterm infants and medical considerations in decision-making towards this group of infants.
Each instructor received the survey link and a personal password via email. After reading the informed consent and agreeing to participate, access to the questionnaire was allowed. The questionnaire contained 17 multiple choice questions requiring mandatory responses for each week of GA between 23 and 26 weeks.
The questionnaire contained three broad axes: characterisation of the interviewees, opinions about current practices of neonatal resuscitation and opinions about ethical issues involved in the resuscitation of extremely preterm infants.
The questions were structured using a Likert scale and were rated as: ‘never’, ‘rarely’, ‘sometimes’, ‘often’ and ‘always’. For the analysis of the responses, the classification ‘never’ was combined with ‘rarely’ and ‘always’ was combined with ‘often’. The statistical analysis was descriptive with the software SPSS (IBM SPSS Statistics for Windows, V.21.0, IBM, Armonk, New York, USA).
Results
Among 685 active instructors of the Brazilian NRP, 560 (82%) completed the questionnaire. At least 75% of the instructors who were active in each federation unit of Brazil participated in the survey. The 560 paediatricians represent approximately 3% of Brazilian paediatricians and their characteristics are shown in table 1. It is noteworthy that at least 70% of them were graduated for more than 10 years and they work daily in the DR and NICU.
Demographic characteristics of the Brazilian Neonatal Resuscitation Program instructors enrolled in study
The opportunity for antenatal counselling of parents by paediatricians was considered scarce and was reported at least ‘sometimes’ by 13%–31% of respondents (table 2). If the professionals surveyed had the opportunity for antenatal counselling, 90% of them would always or often discuss with the parents the possibility of death in general, but only 59% would discuss this possibility in the DR (table 2).
Issues on parental antenatal counselling according to the 560 studied paediatricians
Table 3 shows how the studied paediatricians would counsel parents about resuscitation in the DR, when there is an opportunity to have an antenatal visit, according to the GA. The higher the GA, the lower was the percentage of paediatricians who believe that parents should participate in decision-making towards non-resuscitation in the DR. Table 4 shows the reasons for the lack of participation of parents in decision-making according to the opinion of studied paediatricians.
Opinions of the 560 paediatricians about parental counselling on neonatal resuscitation in the delivery room according to the gestational age
Opinion of the 560 interviewed paediatricians regarding reasons for not allowing parents to participate in neonatal resuscitation decision-making in the delivery room regardless of gestational age
Only 50 participants (9%) reported the existence of written guidelines at their hospital regarding the non-initiation of resuscitation in the DR for extremely preterm infants. However, 445 paediatricians (80%) reported using some criteria for limiting resuscitation in the DR, including GA (426 participants) and BW (299 participants). Among the professionals who cited GA and/or BW, 33% reported considering only GA as a criterion for decisions on resuscitation in the DR, whereas 5% reported valuing only BW; the majority (62%) considered both criteria.
Parents' opinion to limit resuscitation in the DR divided the respondents: 40% of them reported never or rarely considering this opinion, whereas 39% reported always considering it. Furthermore, 446 participants (80%) indicated that neonatologists are the most important professionals involved in decision-making, whereas 316 participants (56%) indicated that parents are the most important. Obstetricians were considerate the least suitable for decision-making on resuscitation in the DR by the respondents.
With regard to the most common ethical dilemmas of medical practice, the opinions of the paediatricians surveyed are shown in table 5.
Agreement or disagreement of the 560 interviewed paediatricians on statements about ethical dilemmas on the beginning of life
Discussion
Paediatricians, with or without a specialist degree in neonatology, attend the delivery of newborn infants in Brazil, including extremely premature infants, and are the main decision makers in the DR scenario. The Brazilian NRP instructors represent paediatricians of all Brazilian states that work in the delivery rooms and NICUs of the main hospitals of the country. Therefore, the high percentage of responses allowed us to draw a panel of the opinions of paediatricians who teach neonatal resuscitation techniques regarding the approach to families and newborns between 23 and 26 weeks of gestation at birth.
Brazilian paediatricians are not routinely called to perform antenatal counselling, which is similar to what is reported in some countries such as Malaysia and Taiwan.15 Our results underscore the difficulty for Brazilian paediatricians to work as a multidisciplinary team with obstetricians and to discuss with families the possibility of not resuscitating the neonate in the DR. The same difficulty was reported by McAdams et al16 in Mongolia, where 90% of the health professionals working in DR reported having difficulties addressing the subject with parents.
Interestingly, 30%–50% of paediatricians would follow the courses of action advised, regardless of the opinion expressed by parents. These results are quite different from developed countries, where it is a routine to include parents in end-of-life decisions.3 The international group that discusses neonatal resuscitation recommends that parents should be consulted about the initiation of resuscitation of extremely preterm infants.17 It is also of note that, at 26 weeks of gestation, 8% of Brazilian paediatricians diverge from international recommendations and do not recommend resuscitation. This may reflect the heterogeneity of NICU beds available in the country, leading professionals to restrict the care for this group of patients in some regions.
Brazilian physicians use personal criteria to limit resuscitation in the DR. The use of GA or BW as the only criterion to decide in DR, different from what the literature establishes, may be influenced by the low frequency of antenatal steroids exposure in extremely preterm infants in Brazil.18 However, it is important to emphasise that this finding is consistent with the recommendations of the Brazilian NRP, as expected, because the paediatricians surveyed teach the recommended guidelines in this programme.
In this study, 80% of the respondents believed that neonatologists should decide on the resuscitation of newborns at the limit of viability. This result is similar to that obtained in 55 European neonatal units, where 93% of those surveyed believed that neonatologists should make decisions on resuscitation of extremely preterm infants in the DR.19 However, for decision-making, integration of the multidisciplinary team is essential to achieve positive outcomes in terms of adequate survival. Guinsburg et al20 indicated that, when there is no agreement between the courses of action of obstetricians and neonatologists regarding antenatal corticosteroids, mode of delivery and resuscitation in the DR, there is a 2.4-fold increase in mortality in the first 24 hours of life of preterm infants.
With regard to ethical issues, 29% of Brazilian paediatricians considered life as an absolute value. Similar to our data, in a study of neonatologists from 10 European countries, 33% of physicians in Italy, 25% in Lithuania and 24% in Hungary believe that life is sacred and every attempt should be made to preserve it, no matter the outcome.21
The present study has limitations, particularly the fact that it is based on responses to a questionnaire, which reflect the intention of the respondents and may differ greatly from reality. Another limitation involves the selection of a questionnaire with closed answers on a subject in which the subtlety of speech may reflect wide variations in medical practice.
Despite these limitations, this is the first study to survey the opinions of Brazilian paediatricians with respect to an important ethical dilemma concerning early life interventions and contributes to the discussion of resuscitation practices worldwide, pointing out that Brazilian practices are essentially paternalistic. Our results indicate that attitudes of Brazilian NRP instructors towards the resuscitation of extremely preterm infants are permeated by ambivalence and contradictions.
The literature about ethical dilemmas in neonatal resuscitation is mainly authored by Europeans and North Americans that take in account their cultural background in the discussion. This paper adds information about thoughts and opinions of professionals highly influenced by this literature, but that have to decide and act in a different reality. When discussing non-initiation of resuscitation of periviable infants, a global view should include the rich countries, the very poor ones and an immense group located between them.
References
Footnotes
Contributors CRA, MFBdA and RG: conceptualised and designed the study, collected the data, carried out all study's analyses and data interpretation, drafted the initial manuscript, reviewed and revised the manuscript and approved the final manuscript as submitted. AS: conceptualised and designed the study, carried out all study's analyses and data interpretation, reviewed and revised the manuscript and approved the final manuscript as submitted. AMM: conceptualised the study, reviewed and revised the manuscript and approved the final manuscript as submitted.
Competing interests None declared.
Ethics approval Ethical Committee on Research of Universidade Federal de São Paulo, São Paulo, Brazil.
Provenance and peer review Not commissioned; internally peer reviewed.
Data sharing statement All the database is available at request with the first and last authors of the paper.
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