Ethics of maintaining extremely preterm infants

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Abstract

Advances in pharmacology and technology have pushed back the limits of viability to 23−24 weeks of gestation at the expense of an increasing number of survivors with disabilities. Treatment of these extremely preterm infants should be based on a thorough determination of diagnosis and prognosis, followed by decision-making on the basis of futility of treatment or quality-of-life issues and the counselling of parents. This paper reviews the survival rates and outcome of infants under 26 weeks of gestation born in Europe and the rest of the world, and discusses the role of parents and the influence of condition at birth, gender and birth weight on ethical decision-making on behalf of these infants. Dutch guidelines on the treatment of extremely preterm infants at birth are presented to assist clinicians facing the challenging ethical, moral, legal and emotional dilemmas that surround this hot topic in perinatology.

Introduction

Over the last 10 years, the ethics of maintaining extremely preterm infants has become a hot topic at medical conferences and is discussed frequently in the medical press. Newer ventilation techniques and medication (antenatal steroids and surfactant) have dramatically improved survival of these tiny infants, but at the expense of worries about their neurodevelopment, growth and later academic achievement. There is increasing controversy over whether we are doing the right thing in neonatology.1 We continue to search for the limit of viability, and place it somewhere between 23 and 25 weeks of gestation. Below 23 weeks, it is biologically almost impossible to ventilate an infant because of the immature structure and physiology of the fetal lung. Inconsistency of pregnancy data or biological variations may account for the occasional survivors who are reported at this gestational age.2 Since the mid-1980s, gestation of 23 weeks has been an insurmountable biological barrier and neither surfactant, antenatal steroids nor new ventilation modalities have been able to change this.2

In an ideal world, guidelines on the limits of viability would be readily available. To develop these, recent data on survival and outcome are needed. Data on the survival of infants born at the margins of viability are difficult to compare because survival rates depend on the denominator used to calculate them; that is the total number of all births (including stillbirths), all live-born infants or only infants admitted to the Neonatal Intensive Care Unit (NICU). Survival rates for unborn infants are lower than those reported for infants admitted to the NICU.3 This should be kept in mind when counselling parents before a possible or imminent preterm delivery. Survival rates are higher in a neonatal unit that admits only in-born infants than in a regional referral unit that also admits out-born infants. Differing attitudes of obstetricians and neonatologists towards resuscitation will also influence survival numbers; a proactive approach results in higher survival rates.4, 5 However, the ultimate goal lies beyond mere survival, and should be survival without major disability. Despite an increase in the survival rates of extremely preterm infants during the last decade, this has not been associated with a reduction in disability. Most studies report a steady prevalence of disabilities (i.e. identical increases in the absolute numbers of survivors with and without disabilities) or an increase in the percentage of infants with disabilities.6

In this paper, we present an overview of the survival rates and later outcome of extremely preterm infants born in Europe and the rest of the world, and discuss the factors that play an important role in decision-making on behalf of them.

Section snippets

Survival

Table 1 shows the survival of extremely preterm infants, according to gestational age, in various European countries. The reported rates are the proportion of live-born infants who survived until discharge. Survival is relatively high in Norway, Sweden, Germany and Austria. Markestad et al.7 from Norway attribute their good outcome to a high proportion (95%) of in-born infants, good perinatal care and the use of surfactant in the delivery room in two-thirds of the infants. Serenius et al.8

Role of the parents

Codes of medical ethics require doctors to give absolute priority to their patient's welfare and have advocated that physicians have no duty to treat, especially when the treatment is futile (no chance, no purpose, unbearable); in this event, the physician, not the parents, has the authority to decide.22 Involvement of the parents in the decision-making process implies that they understand whether care is ethically justified, optional or still the subject of investigations.22

In 2000, the

Conclusion

There is widespread agreement that the aim of neonatal resuscitation should be qualitatively acceptable survival of the child. In the USA, guidelines state that it is inappropriate to resuscitate infants of less than 400 g or less than 23 weeks.12 Most European and Canadian guidelines propose an active approach at 25 and 26 weeks and a flexible approach at 23 and 24 weeks, depending on the opinion of the parents and the condition of the infant at birth. Nevertheless, increasing numbers of

Monique Rijken MD is a Clinical Neonatologist at the Neonatal Center, Department of Pediatrics, Leiden University Medical Center, Leiden, the Netherlands. She is writing a dissertation on the outcome of extremely premature infants participating in the Leiden Follow-Up Project of Prematurity (LFUPP).

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    Monique Rijken MD is a Clinical Neonatologist at the Neonatal Center, Department of Pediatrics, Leiden University Medical Center, Leiden, the Netherlands. She is writing a dissertation on the outcome of extremely premature infants participating in the Leiden Follow-Up Project of Prematurity (LFUPP).

    Sylvia Veen MD Phd is a Senior Neonatologist at the Neonatal Center, Department of Pediatrics, Leiden University Medical Center, Leiden, the Netherlands. She is in charge of the neonatal follow-up program.

    Frans J Walther MD Phd is Chief of Neonatology at the Neonatal Center, Department of Pediatrics, Leiden University Medical Center, Leiden, the Netherlands.

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