Critical care decisions in fetal and neonatal medicine: ethical issues
Dilemmas in current practice: the fetus
Introduction
4.1 In this and the following two chapters we explore more fully dilemmas of decision making in fetal and neonatal medicine. We examine three stages during which decisions take place, beginning in this chapter with those made during pregnancy. In Chapter 5, we consider extremely premature babies born at the borderline of viability (up to 25 weeks and six days of gestation)1before turning in Chapter 6 to focus on babies whose condition has stabilised after resuscitation. Looking beyond, to the time if and when a baby leaves hospital, we discuss longer-term implications for healthcare, education and social welfare, which we consider up to early adulthood, in Chapter 7. As well as attempting to set out the issues that arise at each of these four stages, we use examples to develop our analysis of ethical and social issues and to highlight the legal implications.2 It is not our intention to take a particular stance in the discussion of each of these examples, but to use the cases to illustrate the nature of the issues that can arise in critical care.
4.2 In fetal medicine3, improvements in technology, and greater understanding of how fetal development affects the future health of a child, have changed the way in which pregnancies are managed. Approximately 800,000 women become pregnant in England and Wales each year.4 During pregnancy, women are offered a range of tests, scans and screening procedures, often presented as part of a ‘care pathway’,5 which will inform them and the health professionals providing care about their health, the health of the developing baby and the progress of the pregnancy. Although screening will provide reassurance for most pregnant women, more than 35,000 per annum will be told that there is a risk that their unborn baby may have a serious abnormality.6 Approximately 5% of pregnant women who have blood tests for fetal abnormality will be asked if they wish to have additional diagnostic testing (see Box4.1). In about 2% of those who are tested, the presence of a serious fetal abnormality will be confirmed and the woman will be asked how she would like to proceed.7 She is likely to want to discuss her options with her partner and perhaps other family members. The timing of routine scans is based on fetal development, which means that a woman may only become aware of a fetal abnormality after 20 weeks of gestation. She may need further time to consider the best course of action in her circumstances. Most commonly, the choices will be whether she should accept that her child will have disabilities and continue with the pregnancy, agreeing to an early delivery if appropriate, or whether the pregnancy should be terminated.
| Box 4.1: Antenatal screening programmes in the UK
The options for antenatal screening will be discussed with a pregnant woman by her doctor or midwife. Screening aims to identify pregnancies that are at high risk of congenital or genetic disorders and may be followed by confirmatory diagnostic testing. If there are fetal abnormalities, doctors will advise the woman of possible options. The development of screening programmes with high detection rates and a low incidence of false-positive test results that can be applied to all pregnant women has been given a high priority within the NHS. Conditions for which screening is routinely offered during pregnancy in the UK include Down’s syndrome, fetal anomalies such as hydrocephalus or limb abnormalities, haemoglobinopathies (in certain localities), rhesus haemolytic disease (see Case 1) and Tay-Sachs disease (in some ‘at-risk’ populations). For chromosome abnormalities, particularly Down’s syndrome, screening is carried out by ultrasound (measurement of the nuchal translucency*) at 10–14 weeks of gestation and/or maternal blood analysis at 10–20 weeks of gestation. For other abnormalities, screening by ultrasound imaging is performed (‘fetal anomaly scanning’), usually at about 20 weeks of gestation.†Pregnant women at high risk of specific fetal genetic diseases such as sickle cell disease and thalassaemia (both haemoglobinopathies) are offered a genetic test early in their pregnancy. If a woman is found to be carrying a genetic mutation responsible for either disorder, her partner may also be offered testing. If one or both of them are identified as carrying the trait, biochemical or genetic tests would be offered for the fetus. If a high risk of a fetal abnormality is predicted or detected, fetal diagnostic tests are offered. Fetal material is obtained from samples of the placenta (chorionic villus sampling) or amniotic fluid (amniocentesis) or by direct fetal blood sampling. Each of these techniques carries a small risk (estimated at 1–2%) of miscarriage. The pregnant woman (and her partner) must be informed of this before deciding whether to undertake such a test.
† For further information, see Wald N and Leck (2000) Antenatal and Neonatal Screening (Oxford: Oxford University Press), pp 573; National Institute for Clinical Excellence (2003) Antenatal Care: Routine care for the healthy pregnant woman(London: NICE). |
Footnotes
1 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, 0 days to 23 weeks and six days of gestation (161–167 days of gestation).
2 We use examples that are representative of what occurs in hospital. They are not based on actual 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.
3 We use the term ‘fetal medicine’ to include surgery.
4 National Statistics (Summer 2006) Population Trends No. 124, Table4.1.
5 The National Service Framework Standard for Maternity Services, which must be met by 2014, requires that each pregnant woman has an individual care pathway in order to ensure that all pregnant women receive the same high standard of care. The care pathway is intended to indicate a woman’s progress through the variety of services available and explain how her care will be provided in particular circumstances. See Department for Education and Skills and Department of Health (2004) Maternity Standard, National Service Framework for Children, Young People and Maternity Services(London: Department of Health), available at: http://www.dh.gov.uk/assetRoot/04/09/05/23/04090523.pdf, accessed on: 31 July 2006. For further information on genetic screening programmes, see also Nuffield Council on Bioethics (2006) Genetic Screening: a Supplement to the 1993 Report by the Nuffield Council on Bioethics(London: NCOB).
6 See the website of Antenatal Results and Choices, available at: http://www.arc-uk.org/, accessed on: 29 Aug 2006.
7 In addition, there will be a small number of false-negative test results. For further information, see the website of Antenatal Results and Choices, available at: http://www.arc-uk.org/, accessed on: 29 Aug 2006; and Department for Education and Skills and Department of Health (2004) Maternity Standard, National Service Framework for Children, Young People and Maternity Services(London: Department of Health), available at: http://www.dh.gov.uk/assetRoot/04/09/05/23/04090523.pdf, accessed on: 31 July 2006.