Critical care decisions in fetal and neonatal medicine: ethical issues
Clinical perspectives (Continued)
4.14 Late termination of pregnancy can be traumatic for the woman, her partner, relatives and companions and for healthcare professionals22, as she ends a previously wanted pregnancy and must go into labour and give birth. In addition, at 22 weeks of gestation, a fetus (even with a fatal condition) may show signs of activity at delivery (such as a heartbeat, gasp or reflex movements). The birth of a live child has to be registered as such, which parents and professionals may find distressing when it follows termination, especially when death also has to be registered shortly afterwards.23 The Royal College of Obstetricians and Gynaecologists (RCOG) has developed guidelines that include the recommendation that feticide (causing the death of a fetus) be carried out before the initiation of labour in terminations after 21 weeks and six days of gestation to ensure that the fetus is not born alive.24 The College is also issuing new guidance about the management of pre-viable fetuses of less than 21 weeks, six days of gestation. The recommended method of feticide is an injection of potassium chloride into the fetal heart25 which stops the heartbeat. It is mostly regarded as a means of causing rapid death which does not require analgesia (see paragraph 4.19). Feticide pre-empts the possibility of dilemmas about whether a baby born alive after a termination should be resuscitated. Some parents have been reported to be relieved knowing that their fetus will not suffer during induced labour or be born alive, although in other accounts parents described the procedure as particularly distressing.26Interview studies with parents have found that when the procedure is handled sensitively, reactions to feticide appear not to dominate the experience of grief at the loss of a wanted baby.27
4.15 Since 2002, clinicians in England and Wales have been required to report whether feticide was performed in terminations. In 2005, 31% (approximately 800) of the terminations that took place at 20 weeks of gestation onwards in England and Wales were reported as including feticide.28The Working Party was informed that there may be some variation between doctors on the types of condition for which feticide is offered. However, doctors would usually advise feticide where a fetus has or will develop serious abnormalities, but may live for some time without special assistance after birth, such as in the brain disorder microencephaly (usually only diagnosable very late in pregnancy). Feticide is not always considered necessary if a fetus has an unequivocally fatal condition and will die during or soon after birth.29 It may also be very difficult for practical reasons, for example if the nearest fetal medicine unit is some distance away.30A minority of pregnant women do not wish to have feticide, whatever the diagnosis.31They prefer to be able to hold their baby after birth and be together as a family, even if only for a short while, before the baby dies.32The Working Party was advised that termination of pregnancy after 22 weeks without feticide was an issue of major concern for healthcare professionals in fetal medicine. In particular, they needed a greater understanding of the legal position.33
4.16 This uncertainty over whether doctors are legally obliged to resuscitate any child with a serious condition who is born alive, including conditions incompatible with long-term survival, and regardless of the parents’ wishes, was expressed to members of the Working Party in fact-finding meetings. Unease about this question could affect the advice that doctors provide about feticide. However, such concerns are ill-founded. There is no legal obligation to institute all possible steps to preserve life for any baby with serious abnormalities whose condition is such that it is not in his or her best interests to survive (see paragraph 8.8). Doctors should therefore feel able to respect the woman’s wish if she chooses to decline feticide and not be obliged to press her to reconsider. What is essential in these circumstances however, is that there should be thorough discussions with the woman (and her partner if she wishes) about the likely outcomes, taking into account the circumstances of her case. It must be made clear that in the exceptional circumstances that a baby appears likely to live when the termination is for a non-fatal condition, neonatologists will institute treatment if they believe this to be in the best interests of the baby, having assessed his or her condition at birth. In Chapter 9 we offer some guidance for helping to decide what is in a baby’s best interests. It is important that the woman should be given time to consider her decision and evaluate whether termination without feticide genuinely remains her wish. If so, she should agree a care plan in advance of the procedure that covers the possible outcomes.
4.17 Currently, national statistics do not include data on the extent to which feticide is offered to pregnant women. The BMA has observed that little is known about how parents make decisions following the diagnosis of severe fetal abnormality, including the kind of information and support they receive and how this affects their decision making.34 Available data suggest that parents experience difficulties in deciding how to proceed after such a diagnosis, with two factors reported as being important for decision making. These are first, the impact of the abnormality on the child, on themselves and on other immediate family members (including children they wish to have in the future), and secondly, their prior attitudes and beliefs about termination. It has been suggested that parents tend not to focus on levels of risk and the options available in an objective way, but rather on their perception of their own ability to cope.35Decision making is made more complex when there is uncertainty over how seriously a child will be affected by any disability in the future.
4.18 The Confidential Enquiry into Maternal and Child Health (CEMACH) is currently (2006) undertaking a survey of terminations of pregnancy where a neonatal death was subsequently recorded. The survey will seek to determine the reasons for the termination of pregnancy, the method of termination and whether feticide was offered. Where possible, for terminations over 21 weeks, six days of gestation, the reasons for which feticide is not performed will be recorded, including when pregnant women declined. The Working Party supports the collection of these data for the insight they may give into current practice.
Fetal pain
4.19 The question of whether a fetus can feel pain is almost impossible to answer. For adults, pain involves consciousness, thought, memory and fear. In the fetus, a grimace, physical withdrawal, movement or release of stress hormones into the blood stream does not necessarily mean that pain has been consciously perceived. Scientists disagree as to when the fetus has sufficient neurological development to perceive pain and whether there might be particular characteristics of the fetal environment that inhibit conscious perception of pain in utero.36 Even if the cerebral cortex (where pain and other sensations are perceived) is insufficiently developed before 26 weeks of pregnancy for the fetus to be conscious of pain,37there may be negative consequences from distress associated with invasive procedures which affect subsequent development. In a report on fetal pain, the RCOG suggested that the potential for it should be considered in procedures involving fetuses from 24 weeks of gestation onwards (after which it is possible that the fetus may experience pain), while bearing in mind the potential harm that analgesic drugs may cause.38The RCOG have recommended that fetal analgesia or sedation be considered for major intrauterine procedures, and (see paragraph 4.14) feticide or sedation be considered for late terminations of pregnancy.39
22 Royal College of Obstetricians and Gynaecologists (2001) Further Issues Relating to Late Abortion, Fetal Viability and Registration of Births and Deaths, available at: http://www.rcog.org.uk/index.asp?PageID
23 McHaffie HE (2001) Crucial Decisions at the Beginning of Life(Abingdon: Radcliffe Medical Press), p197.
24 Royal College of Obstetricians and Gynaecologists (1996) Termination of Pregnancy for Fetal Abnormality in England, Wales and Scotland(London: RCOG); Royal College of Obstetricians and Gynaecologists (2001) Further Issues Relating to Late Abortion, Fetal Viability and Registration of Births and Deaths, available at: http://www.rcog.org.uk/index.asp?PageID
25 Royal College of Obstetricians and Gynaecologists (2001) Further Issues Relating to Late Abortion, Fetal Viability and Registration of Births and Deaths, available at: http://www.rcog.org.uk/index.asp?PageID
26 Statham H, Solomou W and Green JM (2001) Care in hospital for parents who terminated their pregnancy, in When a Baby has an Abnormality: A study of parents’ experiences(Cambridge: Centre for Family Research, University of Cambridge), Chapter 6.
27 Personal communication, Dr Ruth Graham, School of Geography, Politics and Sociology, University of Newcastle upon Tyne.
28 This percentage may be an underestimate as routine recording only began in 2002 and the Government Statistical Service states that it is likely that feticide is still being under-reported. Government Statistical Service (2006) Statistical Bulletin Abortion Statistics, England and Wales: 2005, available at: http://www.dh.gov.uk/assetRoot/04/13/68/59/04136859.pdf, accessed on: 29 Aug 2006.
29 Statham H, Solomou W and Green JM (2006) Late termination of pregnancy for fetal abnormality: law, policy and decision-making in four English fetal medicine units BJOG(in press).
30 Feticide may only be carried out in a fetal medicine unit. Royal College of Obstetricians and Gynaecologists (1998) A Consideration of the Law and Ethics in relation to Late Termination of Pregnancy for Fetal Abnormality(London: Royal College of Obstetricians and Gynaecologists).
31 A recent study reported that of 31 parents offered feticide for late termination of pregnancy, three declined; in two cases the baby had a lethal abnormality and the doctors advised that feticide was unnecessary and in the other, at 21 weeks of gestation (i.e. earlier than the limit above which feticide is advised by the RCOG), the parents decided against it. Statham H, Solomou W and Green JM (2002) Termination of pregnancy, in When a Baby has an Abnormality: A study of parents’ experiences(Cambridge: Centre for Family Research), pp 56–106.
32 Personal communication at a fact-finding meeting of the Working Party.
33 Personal communication from Professor Steve Robson, University of Newcastle upon Tyne.
34 British Medical Association (2005) Diagnosing fetal abnormality, in Abortion Time Limits – A briefing paper from the BMA, available at:
http://www.bma.org.uk/ap.nsf/Content/AbortionTimeLimits~Factors~Diagnosing, accessed on: 30 May 2006.
35 Statham H (2002) Prenatal diagnosis of fetal abnormality: the decision to terminate the pregnancy and the psychological consequences Fetal Matern Med Rev13: 213–47.
36 See Anand KJ, Aranda JV, Berde CB etal. (2006) Summary proceedings from the neonatal pain-control group Pediatrics117: S9–22; Derbyshire SWG (2006) Can fetuses feel pain Br Med J332: 909–12; Mellor DJ, Diesch TJ, Gunn AJ and Bennet L (2005) The importance of ‘awareness’ for understanding fetal pain Brain Res Rev49: 455–71; Lee SJ, Ralston HJP, Drey EA, Partridge JC and Rosen MA (2005) Fetal pain: A systematic multidisciplinary review of the evidence J Am Med Assoc294: 947–54; Glover V and Fisk NM (1999) Fetal pain: implications for research and practice Br J Obstet Gynaecol 106: 881–6.
37 Royal College of Obstetricians and Gynaecologists (1997) Fetal Awareness: Report of a working party(London: RCOG Press).
38 Ibid.
39 Royal College of Obstetricians and Gynaecologists (2001) Further Issues Relating to Late Abortion, Fetal Viability and Registration of Births and Deaths, available at: http://www.rcog.org.uk/index.asp?PageID