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With the advances in medical technology, the outcome for high-risk infants has greatly improved, and the limit of human viability has shifted towards an increasingly lower gestational age. However, hand in hand with the positive outcome of saving neonates, modern neonatal intensive care has also brought to light several issues of an ethical nature in the care of these infants, especially those considered to be affected by incurable diseases or severely injured during pregnancy, delivery or the early neonatal period, those affected by major and/or multiple congenital abnormalities, and those at the borderline of viability (25 or fewer completed weeks of gestation). The survival rate of extremely preterm infants improved in the early 1990s, largely as a result of greater use of surfactant therapy and antenatal corticosteroids. However, this improvement in survival may not have been associated with a proportionate decrease in morbidity.1–10 Chronic lung disease, sepsis and poor growth are still common, the neurodevelopmental outcome and cognitive function may be suboptimal, and the effects in adulthood are a concern. At the borderline of viability, the chances of survival increase with each additional week of gestation, and a week makes all the difference in the 22–25-week bracket. In fact, the overall neonatal survival rate is still very low.1–4 Of those who survive, nearly half will suffer moderate to severe disabilities, including deafness, blindness, cerebral palsy, behavioural dysfunction and poor school performance.5 6 Cognitive impairment and the needs of special healthcare and rehabilitation seem to be extremely common.10 The relation between gestational age and mortality is not linear but exponential. This suggests a biological barrier to survival at about 23–24 weeks’ gestation, such as insufficient lung development. Because of the difficult balance between the benefit and burden of providing intensive care for these tiny infants and aggressive management of the pregnancy and delivery for their mothers, guidelines on perinatal care at an extremely preterm gestational age have been formulated in different countries over recent years with the aim of helping parents and practitioners faced with the threat of extremely preterm deliveries.11–25
In 2006, a total of 560 010 infants were born in Italy, 57 765 of whom were foreign.26 Patient mobility in the EU, the result of intense mass migration for tourism, residency and work purposes, means that doctors often assist citizens of various nationalities. This phenomenon gives rise to a variety of problems for patients, healthcare systems and clinicians.27 One question that arises is whether these citizens would be offered very different treatment choices in their own countries. After recently reviewing the official guidelines of various European and non-European countries,28 I am now focusing on medical attitudes in Europe to the treatment of extremely preterm babies and their mothers. The aim of this article is to offer an overview of the different policies in this specific medical field throughout Europe that could be of help in clinical practice.
Tables 1 and 2 illustrate the practical aspects of neonatal and maternal care for infants born at an extremely low gestational age as suggested in official documents published in international journals and on the web.11–25
There is a general agreement about non-initiation of resuscitation in neonates when gestational age is less than or equal to 22 weeks, with intensive care ensured for the 25 weekers. On practical grounds, technical intervention in the mother at 22 completed weeks’ gestation does not mean administration of antenatal corticosteroids or performing a caesarean section with the intention of protecting the fetus. The option for antenatal transport is suggested for obstetric purposes, taking into account the difficulties faced by parents sent to a tertiary centre and the availability of tertiary care facilities. At this age, palliative care for the neonate as well as support for the family are recommended everywhere. The general agreement is that at 22 weeks or less there is no hope of survival for the fetus/neonate and it is a medical duty to offer family-centred comfort care. Weeks 22+0 to 26+6 seem to be considered the cut-off of human viability, and any active intervention at this age should to be considered experimental.16
On the other hand, all countries recommend aggressive management of the mother at 25 weeks: antenatal corticosteroids, transport to a tertiary centre, and caesarean section with the aim of saving the fetus, although in Switzerland and the Netherlands this is rarely performed. With regard to neonatal treatment, the choice everywhere is for active resuscitation and initiation of intensive care, but with the same precautions as in Switzerland—“on an individual basis”19—and in The Netherlands—“unless comfort care seems more justifiable”.21–22 Between 22 and 25 weeks there is “grey zone” with the general consensus that 23–24 weeks’ gestation are the threshold when aggressive measures are presumed to be futile and the recommended management of such fetuses/neonates depends on the parents’ wishes and the neonate’s individual clinical conditions at birth.
In all countries the gestational age is considered the best estimation of the infant’s maturation and consequently prognosis, although many other fetal/neonatal characteristics could play a role and must be kept in mind in the final decision about treatment—for example, the aetiology of the preterm birth, the place of birth, postnatal transport, intrauterine growth retardation, twin pregnancies and antenatal corticosteroids. Pregnancy care is highly standardised in Europe, and in most pregnancies ultrasound screening is performed before 20 weeks’ gestation.3 4 16 Moreover, nearly one-fifth (18%2 and 20%1) of these infants derive from assisted reproductions. Gestational age is often clearly established from the last menstrual date, ultrasound measurements and obstetric history. If this is uncertain, the role of the neonatologist becomes more important in evaluating the infant’s condition at birth. Irrespective of gestational age, all decisions made before delivery may therefore be altered after birth with the aim of offering the best care to those infants whose conditions deserve intensive care. In doubtful cases, resuscitation—provisional intensive care—is appropriate for the infant until a further assessment of his/her clinical course clarifies the situation, while leaving room for the withdrawal of intensive care if it is in the infant’s best interests. This practice is difficult in a country such as Italy where the withdrawal of intensive care is still considered by many doctors to be illegal. German doctors seem to prefer an individual approach as opposed to the statistical approach,11 but, in my opinion, these are not in opposition to each other, and may be combined so that the decision based on the individual conditions follows an initial evaluation of the infant on statistical grounds.14
Great attention is paid in all countries to the counselling process, with emphasis on the need to provide parents with ongoing information suited to their cultural and ethnic diversities. They must be allowed time to comprehend the situation, especially the uncertainty of it and the relative prognosis. Their freedom of thought must be based on honest and accurate information, with no subtle imposition of the doctor’s convictions and emphasis on the possibility of the prenatal decisions changing after delivery.
With regard to the parental position in decision making, what appears evident from a European overview is the important role offered to parents, with the firm assumption that, in exercising their authority, they are acting in their infant’s best interests. The decision making assigned to parents complies with the ethical point of view that recognises that they have the legal standing to decide on behalf of their infants, and in the event of uncertain prognosis, or an uncertain balance between advantages and disadvantages (as at 24 weeks or under), their wishes are of vital importance and must be taken into account.
Although there are many subtle differences among European statements addressing recommendations on treatment of extremely preterm pregnancies/neonates depending on the different cultural and social background of each country, the general recommendations are very similar. Of course, the availability of guidelines may not automatically affect physician behaviour,12 and we do not really know how much these recommendations influence medical practice in different countries. Studies are needed in these fields. From this review it is also evident that, despite being extremely useful, guidelines on perinatal care of peri-viable fetuses/neonates are intended as a general framework to help clinicians and parents in their decision making in this dramatic event. In respecting the dignity of every human being, they also outline the limits of modern standards of care and the medical duty to offer unconditional treatment to mothers and newborns.
Competing interests: None.