Infants of borderline viability: Ethical and clinical considerations
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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Cited by (31)
End-of-Life Decisions 20 Years after EURONIC: Neonatologists’ Self-Reported Practices, Attitudes, and Treatment Choices in Germany, Switzerland, and Austria
2019, Journal of PediatricsCitation Excerpt :First, the evolving culture of discussing nontreatment decisions within the pediatric community in public might have contributed to increase the willingness of neonatologists to consider limiting treatment when this is deemed to be in the patient's best interest. In the wake of the EURONIC study, there has been an ongoing lively debate about the indication, legal basis, and other aspects of withholding and withdrawing life-sustaining medical treatment in pediatrics.13,14 Many aspects of this medical and moral debate have also found their way into several official documents published by the respective medical societies of Germany, Switzerland, and Austria.15-20
Antenatal Consultations at Extreme Prematurity: A Systematic Review of Parent Communication Needs
2018, Journal of PediatricsResuscitation of likely nonviable infants: A cost-utility analysis after the Born-Alive Infant Protection Act
2012, American Journal of Obstetrics and GynecologyCitation Excerpt :Some ethicists argue that the federal Child Abuse Amendments of 1984 require treatment, regardless of severe physical and mental disabilities.63 Ethicists and neonatologists argue that early delivery room and NICU interventions allow time to assess response to treatment and diagnostic studies to distinguish those infants who will benefit from intensive care from those who will die despite aggressive life-support.64,65 Critics of selective intervention practices contend that birthweight, gestational age, or medical acuity criteria offer no useful discriminatory power in the prediction of vital status or neurodevelopmental prognosis among survivors.66,67
Prenatal and Neonatal Palliative Care
2011, Textbook of Interdisciplinary Pediatric Palliative CareHow nurses assist parents regarding life support decisions for extremely premature infants
2010, JOGNN - Journal of Obstetric, Gynecologic, and Neonatal Nursing