Infants of borderline viability: Ethical and clinical considerations

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Summary

The burden of prolonged intensive care for infants of borderline viability and the relatively high disability rate among survivors pose ethical and clinical problems. Bioethicists have argued that clinical decisions should be based on the infant's ‘best interests’, balancing the burden of intensive care including ‘pain and suffering’ against the likely outcome. However, there are so many uncertainties that the ‘best interest’ argument is more helpful in defining problems than driving clinical solutions. The parents' interests are inextricably linked with those of their infant and have considerable weight. Parental complaints about delivery room care are rarely based on a conflict of ethical opinion. They are more likely due to misunderstanding, confusion and tension among staff and parents as a result of a failure to have in place or to implement agreed protocols. Information given during pre-delivery counselling can easily be misunderstood. The condition of the infant at birth and response to bag and mask ventilation have an important role in influencing whether to continue intensive care. Subsequent care in the neonatal intensive care unit (NICU) should be considered as a ‘trial of life’, with the option of withdrawing ventilatory assistance according to the nature and extent of neonatal complications.

Introduction

Improved survival rates of very preterm infants in the past 20 years have resulted in life-saving support being offered to infants of borderline viability. It was only by ‘testing the waters’ as part of ordinary clinical practice that the notion of borderline viability could be given meaning in terms of a gestational age range, which for the purposes of this paper is 21–25 weeks. Our ability to provide for their care in a way that results in a proportion of them who would otherwise have died, being discharged home with their parents has outstripped our capacity to manage wider and inseparable issues that have emerged. The burden of intensive care and, for many of these infants, a legacy of impairments have to be balanced in some way against the benefits of survival. The problem is magnified in so far as care offered before birth, at birth and in the neonatal period is largely based on evidence derived from research observations in more mature fetuses and infants. Thus, there are both ethical and clinical dilemmas.

A nihilistic approach is unhelpful because most pregnant mothers want to take home a healthy baby who will develop normally, and it is the role of doctors, midwives and nurses to facilitate this as far as is reasonably possible. Lack of evidence for many of the treatments offered to fetuses and newborns of borderline viability has a positive aspect in that it serves to highlight the direction that multicentre randomised controlled trials (RCTs) need to take in the coming years.1 Ethical dilemmas exist across all branches of medicine – indeed the extremely preterm neonate and the geriatric patient share much in common in terms of the need to consider the balance between the burden of treatments against the potential quality of life, all in the context of family carers, whether they are parents or sons and daughters.

Much of the variation in published survival data is influenced by the extent to which live births are notified, the attitude of obstetricians to threatened delivery, and policies with respect to withholding resuscitation at birth and withdrawing intensive care on the neonatal intensive care unit (NICU).2, 3 There is also likely to be population variation due to sociodemographic and genetic factors, as well as differences in obstetric complications.4

The EPICure study, a prospective observational study of all births from 20–25 weeks of gestation in the British Isles during a 10-month period in 1995 has relatively large numbers of recorded live births at 22–25 weeks gestation, compared with other studies conducted in the 1990s.5, 6 The survival and neurodevelopmental outcome information is summarised in Table 1. A further study, ‘EPICure 2’, will report on outcomes for babies born at less than 27 weeks gestation during 2006. The early results of this study are awaited and will help in our understanding of the pattern of any trends in survival rates for extremely preterm infants over a decade. Comparing different populations over time does not provide reliable information about trends. However, cited data7 from the Trent Region, UK, suggest that from 1996 to 2003 survival increased for infants born at 24–26 weeks of gestation, but not for those born at 23 weeks of gestation. Recently published national data from Finland indicate that there was no significant change in survival rates among live born infants of 22–26 weeks of gestation, although some neonatal morbidities increased, when a cohort born in 1999–2000 were compared with an earlier cohort born in 1996–1997.8

The interpretation of neurodevelopmental follow-up data is even more problematical, as they are influenced by all the factors that impact on survival statistics. In addition, the definitions of outcomes are often not consistent between publications and the age of follow-up varies. The subject has been reviewed by Marlow.9 Data from a 6-year follow-up of children in the EPICure study are robust and reflect a national population6 (Table 1).

Section snippets

Ethical considerations: the best interest concept

Given the uncertainties about outcomes in individual infants, is there an ethical framework that might make decisions about resuscitation at birth and the provision of intensive care easier? A central theme put forward by bioethicists and one that has acquired considerable authority over the years is the concept of acting in the best interest of the infant. This helps us to understand the ethical and moral dimensions of providing resuscitation in the delivery room and intensive support for

Counselling parents

Only a small minority of births at the margins of viability occur so precipitously that there is insufficient time for the mother to receive counselling beforehand. Perinatal data from surveys that include births at the margin of viability suggest that up to two-thirds of such pregnancies have complications that would bring the mother to the attention of the obstetrician days or weeks before delivery.5

The main purpose of pre-delivery counselling is to provide parents with information so that

Assessment and delivery room care

Infants of borderline viability should be carefully assessed at birth by an experienced neonatologist. The purpose is to confirm or otherwise signs of life; to form an opinion on whether the apparent gestational age based on physical appearance and size is consistent with information before birth; to assess the condition of the infant in terms of vital signs and the presence of malformations; and to decide whether any medical intervention is appropriate, taking into account any decisions that

Limits of continuing care on the NICU

For those who do improve with resuscitation and who are transferred to the NICU, there are essentially two alternative approaches, neither supported by a very strong evidence-base. Elective intubation has the advantage of providing the route for surfactant administration. Respiratory support may be continued with appropriate positive pressure ventilation or with endotracheal continuous positive airways pressure (CPAP) treatment, depending on the infant's respiratory drive.

The alternative for

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