Critical care decisions in fetal and neonatal medicine: ethical issues
Dilemmas in current practice: babies born at the borderline of viability
Introduction
5.1 We use the term ‘borderline of viability’ to describe the time of birth of extremely premature babies who are born alive at or before the gestational age of 25 weeks and six days.1 This limit has fallen by approximately one week every decade over the past 40 years, and may be attributed at least in part to advances in technology and care. Babies are born at this early stage of gestation because of spontaneous labour or because of early delivery to safeguard the health of the baby or mother or both. At these stages of gestation, the prospects of healthy survival are reduced and for this reason critical care decisions after birth may need to be taken. Multidisciplinary discussions between neonatal and maternity staff, including obstetricians and midwives, are of paramount importance. Plans must be made about a series of steps in clinical management that will need to be discussed with the mother and, where possible, her partner, so that the best decisions can be made for caring for her and the baby.
5.2 Where labour at borderline viability is likely, several practical decisions must be taken about the best way to manage care. For example, if a pregnant woman is admitted to a district general hospital, should she be transferred to a hospital with a specialist fetal medicine or a (level 3) neonatal unit?2,3Is it safe to do so for her and the baby or would it be too far from her home? Is there a local Perinatal or Neonatal Network4with guidelines that should be followed? A decision will also need to be made about whether a Caesarean section should be performed, bearing in mind that at this stage of pregnancy this surgical procedure is a serious and hazardous intervention for the woman that may affect her future reproductive capacity.5 If there is little prospect that treatment can improve the health of the baby, a decision may also need to be made about whether palliative rather than intensive care should be provided after birth (paragraphs 6.18–6.22). While these are primarily obstetric decisions, they can only be made sensibly in the context of plans determined jointly between all professional groups and the parents. The clinical staff at the neonatal unit will need to determine whether there are sufficient expertise and resources available to provide optimal care of the baby. They should also ascertain whether the parents want the baby’s life to be supported by active intervention, and obtain their view on what should be done if the baby is in unexpectedly good or poor condition. When labour occurs spontaneously, there may be very little opportunity to plan ahead.
5.3 We begin by explaining how survival rates for babies at the borderline of viability have improved, and describe current clinical practice in the UK. We then provide some examples to illustrate the kinds of dilemma that parents and health professionals may encounter when making decisions in these difficult cases. Each example is examined from ethical, social and legal perspectives, followed by a consideration of economic issues.6
1 Measurements are from the first day of the pregnant woman’s last menstrual period[0]. By convention, the number of weeks of gestation refers to the period from the first to the last day of that week. For example ‘at 23 weeks’ means from 23 weeks to 23 weeks, six days of gestation (161–167 days of gestation).
2 In a level 3 neonatal unit, staff have exclusive responsibility for neonatal care and have no other paediatric responsibilities. Since 2003, Department of Health policy has been that babies with complex care needs or requiring long periods of respiratory support should be cared for initially in a level 3 unit, especially if born at 27 weeks of gestation or less. See Department of Health (2003) Report of the Neonatal Intensive Care Services Review Group, available at:
http://www.dh.gov.uk/assetRoot/04/01/87/44/04018744.pdf, accessed on: 15 June 2006.
3 There is evidence that outcomes for premature babies are improved when they are born within a hospital that has a specialist neonatal unit. American Academy of Pediatrics Committee on Fetus and Newborn (2004) Policy Statement: Levels of neonatal care Pediatrics 114: 1341–7; Cifuentes J, Bronstein JM, Phibbs CS, Phibbs RH, Schmitt RK and Carlo WA (2002) Mortality in low birth weight infants according to level of neonatal care at hospital of birth Pediatrics109: 745–51.
4 It is the policy of the Department of Health to provide all neonatal care in England within agreed managed clinical networks comprising a number of hospitals with differing types of neonatal unit (Department of Health (2003) Report of the Neonatal Intensive Care Services Review Group, available at: http://www.dh.gov.uk/assetRoot/04/01/87/44/04018744.pdf, accessed on: 15 June 2006). This strategy is encouraged by BAPM (British Association of Perinatal Medicine (2001) Standards for Hospitals Providing Neonatal Intensive and High Dependency Care, 2nd Edition, available at: http://www.bapm.org/media/documents/publications/hosp_standards.pdf, accessed on: 5 Sep 2006). There are 24 such networks in England, and these are called either Neonatal Networks or Perinatal Networks. (See NHS Neonatal Networks What is a Neonatal Network?, available at: http://www.neonatal.org.uk/Healthcare+Proffessionals/About+the+Networks/ accessed on: 18 Aug 2006.) The aim of these networks is to ensure that groups of hospitals and units work together to offer a range of levels of care and improve the services they offer. The networks are intended to facilitate the concentration of skills and expertise required within an area, and encourage transfers to local units in order to offer high-quality and appropriate neonatal care close to the mother’s home.
5 A classical Caesarean section would be required, which involves opening the abdomen and the upper part of the uterus, unlike the operation which is usually performed at or near term in which only the lower part of the uterus is opened (lower segment Caesarean section). The uterus is more likely to rupture in a future labour if there is a scar from a previous classical Caesarean than from a lower segment Caesarean section.
6 We use examples that are representative of what occurs in hospital. They are not based on clinical cases. In the discussion of each example, issues are highlighted, some of which were drawn to the attention of members of the Working Party during fact-finding meetings. We acknowledge that the choice of the issues that we discuss after each example may influence how the examples themselves are perceived by different readers, depending upon the reader’s own worldview.