ARTICLE IN PRESS Social Science & Medicine 60 (2005) 2085–2095 www.elsevier.com/locate/socscimed Framing the fetus in medical work: rituals and practices Clare Williams Department of Midwifery and Women’s Health, King’s College London, Rm 5.4 Waterloo Bridge Wing, 150 Stamford Street, London SE1 9NN, UK Available online 13 November 2004 Abstract What does it mean to investigate the fetus, and what might be the potential consequences? Although a number of feminists have engaged with the debate around the status of the fetus in terms of the possible implications for women, discussion of fetuses has been avoided by many feminists, in response to the politics around the abortion debate. However, there has recently been a move to explore the ways in which the meanings and significance of the fetus can be socially constructed. Set within a United Kingdom context, this paper focuses on two areas which are arguably changing perceptions of the fetus: the recent ‘discovery’ of fetal ‘pain’; and the growing recognition of the fetus as a patient. One of the key concerns of those who support the autonomy of women is that any increasing discourse around the concept of fetal patienthood may promote the notion of fetal personhood, which in turn may affect the status of pregnant women. In exploring perceptions of the fetus, this article firstly cites some of the key policy documents and medical articles which were published during the 1990s, looking at apparent shifts in the ways in which the fetus is discussed in terms of pain and patienthood. It then explores how practitioners from different disciplines talked about fetal pain and patienthood in relation to the clinical setting. Although this paper does not provide conclusive evidence of a wholesale shift in terms of how the fetus is perceived by practitioners, it does point to subtle shifts occurring, which may or may not be significant. It is important to track such shifts closely, primarily because of the potential impact on women, but also for others involved, including practitioners. Such tracking needs to be set within specific cultural and policy contexts. r 2004 Elsevier Ltd. All rights reserved. Keywords: Fetus; Fetal pain; Fetal patient; Prenatal screening; UK Introduction Although a number of feminists have engaged with the debate around the status of the fetus in terms of the possible implications for women (e.g. Spallone, 1989; Stacey, 1992; Rose, 1994; Casper, 1998), discussion of fetuses has been studiously avoided by many, in response to the politics around the abortion debate (Mitchell, 2001). Even the use of the word fetus can be Tel.: +44 78500 93522; fax: +44 208 898 2661. E-mail address: [email protected] (C. Williams). controversial. For obvious reasons, anti-abortionists prefer to use terms such as baby, or unborn child. In contrast, many feminists shy away from using the word baby, not wanting to give the fetus human status. There is a tendency to use the word fetus, although this leads to a further dilemma, as they recognise it to be a word that pregnant women themselves rarely use (Markens, Browner, & Press,1999). If the word fetus is controversial, the use of its image is arguably even more so. Prolife advocates have worked hard to forge a rhetorical connection between the word fetus and an arresting visual image of the late term fetus, thereby ensuring that in such circumstances, the fetus performs an 0277-9536/$ - see front matter r 2004 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2004.09.003 ARTICLE IN PRESS 2086 C. Williams / Social Science & Medicine 60 (2005) 2085–2095 anti-abortion service. In contrast, those who are prochoice rarely use images of fetuses to support their case (Williams, Kitzinger, & Henderson, 2003). However, there has recently been a move to explore the ways in which the meanings and significance of the fetus can be socially constructed (eg Casper, 1998). As Michaels and Morgan argue: ‘While the effort to buttress women’s procreation agency ought to proceed apace, it is increasingly difficult to maintain the position that fetuses do not merit a place on the social stage’ (1999, pp. 5–6). There are a number of interconnected innovations which have led to this shift towards viewing the fetus as meriting a place ‘on the social stage’. These include the recent ways in which, ‘the use of fetal images, visualization techniques and medical procedures have placed ‘‘life before birth’’ in front of our cultural eyes’ (Michaels & Morgan, 1999, p. 6). It is recognised that recent advances enabling higher quality fetal ultrasound images have played a central role in facilitating this extension of rituals and practices. For example, such images enable antenatal diagnoses and medical procedures; they can potentially change the meanings of pregnancy for women (Rothman, 1989; Mitchell, 2001; Taylor, 1998), men (Draper, 2002; McCreight, 2004) and health practitioners (Williams, Alderson, & Farsides, 2001; 2002b); and it is argued that they can mark a change in social status for the fetus, to that of ‘social child’ (Draper, 2002; Williams, 2003). As Mitchell and Georges (1998) state: Pregnant women expect that they will ‘‘meet their baby’’ on the ultrasound screen, and are encouraged by experts to see in the image digitalized evidence of a gendered, conscious and sentient fetal actor communicating its demands and needs (1998, p.120). Michaels and Morgan (1999) argue that such practices can potentially lead to ‘person making’: Though the criteria governing the attribution of personhood are dynamic and subject to change, rituals and practices that govern person making are extended to fetuses: fetuses are sexed, named, ‘‘photographed’’, surgically altered, spoken to and about, and even speak themselves, Hollywood style (1999:6). A further example of this extension of rituals and practices to fetuses is the way in which legislative and hospital practices in relation to pregnancy loss have changed over the past decade (McCreight, 2004). This is partly due to the 1992 Still Birth Definition Act which stated that a stillbirth should be legally defined as a child born dead after the 24th week of pregnancy, rather than after the 28th week of pregnancy. Following registration, ‘burial or cremation can then take place, in the same way as for any other dead child’ with guidance placing importance on giving parents opportunities for ‘showing respect for their babies with naming ceremonies, memorials and memorial services and books of remembrance’ (Independent Review Group on Retention of Organs at Post-Mortem, 2001, p. 2). There has also been an increasing acknowledgement that the disposal of ‘fetal remainsymust be carried out as respectfully a possible’, and that ‘parents may wish to mark the occasion with a small ceremony’ (Independent Review Group on Retention of Organs at Post-Mortem, 2001: 3). In addition to these shifts, there have been a number of important changes in medical practice relating to viability which may have affected ideas about fetal status. Reflecting on the changes that have occurred during his career, John Wyatt, a neonatal consultant, writes: In 1967 when the Abortion Act came into force in Britain, the scientific understanding of fetal development and behaviour was rudimentaryyEven newborn babies were thought to be incapable of any sophisticated perceptual or learning abilities. As a medical student, I was taught that newborn babies were blind, unaware of their surroundings and incapable of feeling pain. Twenty years later we have discovered that babies have a range of sophisticated abilitiesy In 1967 long term survival of preterm babies born before 32 weeks was unusual and 28 weeks seemed an absolute barrierySurvival at 23 and 24 weeks gestation is now commonplace and occasional survival at 22 weeks and less than 500 g birthweight has been described (2001, ii p. 16–17). Viability issues are also linked to the law in the United Kingdom (UK) in relation to abortion criteria. Currently, for any anomaly identified in the first or second trimester (up to 24 weeks gestation), termination of pregnancy can be offered. Prior to the passing of the Human Fertilisation and Embryology Act in 1991, parents were not given the option of terminating a pregnancy if a fetal anomaly was discovered after viability, although labour could be induced early. UK law now allows termination of pregnancy on the grounds of serious fetal anomaly at any gestation up to term (40 weeks) (Statham, Solomou, & Green, 2001). Set within a UK context, this paper focuses on two linked ‘rituals and practices’ which are arguably changing perceptions of the fetus: the recent ‘discovery’ of fetal ‘pain’; and the growing recognition of the fetus as a patient. Although these issues are of course closely tied to the abortion debate, in this article that debate will not be addressed explicitly. It should also be stated that although the paper focuses on the fetus, I place—and ARTICLE IN PRESS C. Williams / Social Science & Medicine 60 (2005) 2085–2095 therefore discuss—this topic within the overall framework of women’s health issues (Casper, 1998). Although, as argued by Michaels and Morgan (1999), the criteria governing the attribution of personhood are not fixed, one of the key concerns of those who support the autonomy of women is that any increasing discourse around the concept of fetal patienthood may promote the notion of fetal personhood, which in turn may affect the status of pregnant women (McLean, 1999). Fletcher and Jonsen (1991) argue that: The designation of the fetus as patient (i.e. as a medically treatable being) would not seem equivalent to an attribution of personhood. The latter concept, without doubt, bears much more philosophical and theological weight than the former and requires considerably more than ‘treatability’ to justify its attribution to the fetus (1991, p. 16). However, in practice, these concepts may not be as clearcut as Fletcher and Jonsen believe. From a legal perspective, McLean argues that, despite the lack of agreement on the moral status of the fetus and the legal clarity that in the UK, the fetus has no rights, prenatal technologies such as ultrasound tend to promote the notion of two ‘patients’, in contrast to earlier interdependent models of the woman–fetus relationship. She argues that this changing perception may have both legal and ethical repercussions, Part of the difficulty is that four of the major principles of Western medical ethics, justice, respect for autonomy, beneficence and non-maleficence (Beauchamp and Childress, 1989) are predominately individualized concepts, containing little capacity or authority to balance the competing needs of patients (Williams, Alderson, & Farsides, 2001). Locating fetuses in both material and symbolic realms enables us to examine how meanings and practices form around the fetus, and are disseminated. This emphasis on meanings also focuses attention on representations, and on how fetuses are differently constructed within specific practices and contexts (Casper, 1998; Morgan and Michaels, 1999). It is apparent that fetuses can be constructed in a myriad of alternative ways, reiterating the notion that, ‘fetuses are not natural entities, but dynamic cultural constructions crafted to suit certain agendas’ (Mitchell, 2001. p. 210). As Casper argues in relation to her work on fetal surgery: Not all fetuses are patients, nor are all fetuses considered persons; even the same fetus may shift between these different statuses. We need to ask who views the unborn patient as a person, under what conditions, with what consequencesy (1998, p. 217). In exploring perceptions of the fetus, this article firstly cites some of the key UK policy documents and medical articles which were published during the 1990s, looking 2087 at apparent shifts in the ways in which the fetus is talked about in terms of pain and patienthood. It then explores how health care practitioners, whose daily work brings them into contact with pregnant women, talk about fetal pain and patienthood. Methods This paper reports on one aspect of an ongoing project which focuses on the extent to which genetic developments and new reproductive technologies might be changing practitioners’ and policy makers’ perceptions of the fetus, women, and the maternal–fetal relationship. Following Ethics Committee approval, part of the research project has involved observation in two London hospitals, in a variety of clinical settings which pregnant women attend. Twenty in depth interviews have been carried out with a variety of practitioners working within these hospitals, selected because their work brings them into contact with pregnant women and fetuses in different, often contrasting settings. In order to set the study within a wider context, interviews are also being carried out nationally with individuals selected as having particular perspectives on women and fetuses, for example, representatives of disability rights groups, and eight such interviews have been completed. This paper draws on the interviews carried out with medical and midwifery practitioners. The interviews were conducted as ‘guided conversations’ (Lofland and Lofland, 1984), in order to encourage respondents to give their own accounts and meanings. Interview themes vary according to the individual, but core themes include topics such as the values and beliefs which inform the individual’s thinking in relation to fetal status; the influences on their thoughts about fetal status, including any specific policy documents and articles; and whether genetic and other technologies are changing maternal–fetal relationships. With permission, all interviews were taped and transcribed. Transcripts were analysed by content for emergent themes (Weber, 1990), which were then coded (Strauss & Corbin, 1990). Rather than being ‘representative’, quotes have been specifically selected to illustrate the different ways in which these practitioners talked about women and fetuses. To protect anonymity, each individual has been allocated a number. A further strand of the project has been an examination of key publications, mainly medical/nursing articles, reports and policy documents, from 1990 to the current time, in order to explore whether the ways in which the fetus is discussed have shifted. Although this was not a systematic review, relevant journals and websites were searched in detail. Asking practitioners and other key stakeholders from a wide variety of backgrounds which publications had influenced their ARTICLE IN PRESS 2088 C. Williams / Social Science & Medicine 60 (2005) 2085–2095 perceptions and practices in relation to the fetus also helped ensure that relevant documents were identified. The material was analysed by careful reading of publications in order to trace any shifts over time in how the fetus was described and presented. The next section looks at some of the medical articles and policy documents, highlighting publications relevant to the topics of fetal pain and patienthood. Themes Fetal pain and patienthood in reports and medical articles In 1994, an influential article published in the Lancet on the effects of intrauterine needling of fetuses at 23 or more weeks of gestation, gave rise to discussions about whether fetuses feel pain (Giannakoulopoulos, Sepelveda, Kourtis, Glover, & Fisk,1994). This was followed in 1995 by a Report requested by the Department of Health on fetal pain, which firmly ruled out the possibility of a fetus experiencing pain before 26 weeks gestation (Fitzgerald, 1995). In 1995, the British Journal of Obstetrics and Gynaecology (BJOG) published an article entitled, ‘Is third trimester abortion justified?’, in which the authors attempt to: ‘address the question of whether the third trimester fetus is a patient. The clinical utility of this approach is that, as a rule, patients should not be killed by physicians. A fetus is a patient when it is considered viabley This is generally accepted to be 24 weeksy For many anomaliesyneither death nor absence of cognitive developmental capacity is a certain or near certain outcomey Therefore, a woman’s exercise of autonomy to request a third trimester abortion for a fetus with an anomaly, such as Down’s syndrome, lacks ethical authority, and as a matter of professional integrity no physician should carry out such a request.’ (Chervenak, McCullough, & Campbell, 1995, pp. 434–435). In this article, then, Chervenak et al. (1995) are clearly linking fetal viability with patienthood, and consequently, with an entitlement to consideration and possible protection. In 1996, a Report published by the Royal College of Obstetrics and Gynaecology (RCOG), ‘Termination of pregnancy for fetal abnormality in England, Wales and Scotland’, stated that, ‘[the evidence] suggests strongly that the immaturity of the fetal central nervous system prevents conscious awareness of pain before 26 weeks gestation’ (1996, p. 12). This was followed by four articles published in the British Medical Journal (BMJ), all entitled, ‘Do fetuses feel pain?’, and below are quotes from the two most contrasting articles: ‘Children and adults come to a conscious appreciation of pain through a developmental process which the fetus has yet to experience. Though biological development is necessary for the conscious appreciation of pain to occur, the mistake is to say that biological development is enough. ‘‘Fetal pain’’ is therefore a misnomer at any stage of fetal development.’ (Derbyshire & Furedi, 1996, p. 795). ‘..temporary thalamocortical connections start to form at about 17 weeks and become established from 26 weeks. It seems very likely that a fetus can feel pain from that stageyThough we cannot measure pain, we can measure fetal hormonal stress responses, which occur from at least 23 weeks of gestationy’ (Glover & Fisk, 1996, p. 796). In 1997, ‘Fetal Awareness’, a Report published by the RCOG stated that: ‘The Working Party concludes that it is not possible for the fetus to be aware of events before 26 weeks gestation. Because of the uncertainty that attends estimates of gestational age, it may be appropriate to consider providing some form of fetal analgesia [pain relief] or sedation for major intrauterine procedures performed at or after 24 weeks gestation (1997, p. 23)yWe recommend that practitioners who undertake diagnostic or therapeutic surgical procedures upon the fetus at or after 24 weeks gestationyconsider the requirements for fetal analgesia and sedation’ (1997, p. 4). However, only 5 months later, in 1998, another RCOG Report, ‘A consideration of the law and ethics in relation to late termination of pregnancy for fetal abnormality’, showed a marked shift in language, as exemplified by the move from asking practitioners to, ‘consider’ requirements for fetal analgesia, to stating that they have ‘a duty’ to prevent pain. Although the 1997 Report guidelines relate to diagnostic or therapeutic procedures, as opposed to late terminations, the wording is significant: ‘The obstetrician has a duty to protect the fetus from suffering pain in all terminations of pregnancy regardless of gestation (1998, p. 17)y In late terminations for fetal abnormality, or in the interests of the mother, methods must be chosen to avoid the risk of fetal pain’ (1998, p. 18). In 1998 a clinical review was published on fetal medicine in the BMJ written by David James, a professor of ‘fetomaternal’ medicine, in which he states: ‘In the 13 years since the first annual symposium of ‘‘The Fetus as a Patient’’, diagnostic skills with fetal disease have improved enormously, but therapeutic approaches remain limitedyArguably, the most ARTICLE IN PRESS C. Williams / Social Science & Medicine 60 (2005) 2085–2095 significant advance is that most professionals and parents consider the fetus as a separate individual and a potential patient in his or her own righty’ (1998, p. 1580). In 1999, the BJOG published another article by Chervenak, McCullogh, and Campbell entitled, ‘Third trimester abortion: is compassion enough?’ in which they conclude: ‘It follows from the arguments we have presented here, based on virtues and ethical principles relevant to the concept of the fetus as a patient, that third trimester abortion should be restricted to pregnancies complicated by fetal anomalies in which either death or absence of cognitive developmental capacity is certain or near certain. Only in these cases should compassion for the pregnant woman be decisive. In all other cases, integrity requires that doctors refuse requests for third trimester abortion’ (1999, p. 295). This was the article most frequently cited by practitioners as influencing their practice. One of the reasons it was so influential was that the article was ‘Editor’s Choice’, with the editor stating: ‘With the technology of the late twentieth century a fetus is considered to be viable at 24 weeks of gestation: after this point therefore the doctor has a duty of beneficence to the fetus, and should show it the intellectually disciplined compassion he affords it to adults who are ill’ (1999, p. vii). Here, the editor is making a powerful case for linking fetal viability with an entitlement to be treated as adults might be. In another article published later that year, again in the BJOG, ‘Fetal pain: implications for research and practice’, Glover and Fisk (1999) argue that: ‘The fetus is currently treated as though it feels nothing, and is given no analgesia or anaesthesia for potentially painful interventionsyGiven the anatomical evidence, it is possible that the fetus can feel pain from 20 weeks and is caused distress by interventions from as early as 15 or 16 weeksyin the UK, even frogs and fishes are required by Act of Parliament to be protected by anaesthesia from possible suffering due to invasive procedures. Why not human beings?’ (1999, pp. 884–885). To conclude this section, despite the uncertainty, there appears to have been a slow but seemingly steady progression in the medical articles and reports cited, towards recognising the fetus as a patient, and as an entity which may feel ‘pain’, with the advice to practitioners becoming increasingly firm on the subject of fetal analgesia. It is against this background that the practitioners I interviewed in 2002/3 worked. 2089 Fetal pain and patienthood in the clinical context As Casper argues, decision making about procedures and practices are key events by which definitions of the fetus can be formed (1998). In this section I will explore how the medical, midwifery and nurse practitioners I interviewed talked about the issues of fetal pain and patienthood. These practitioners were all involved with pregnant women in their daily work. The majority of staff quoted below worked in two Fetal Medicine Units (FMUs), where a variety of fetal procedures were offered at the time this study was undertaken. These included fetal surgery for diaphragmatic hernias; fetal blood sampling; the use of catheters to drain excess fluid from fetal organs; fetoscopy, used to diagnose and treat fetuses; laser surgery for twin to twin transfusion; selective termination of a fetus in multiple pregnancies, where other fetuses were at risk; feticide (which usually involves injecting the fetal heart with potassium chloride under ultrasound guidance, leading to almost instant death of the fetus) for fetal anomalies. Therefore, staff might carry out potentially life saving fetal treatment, followed immediately by feticide for a fetal anomaly. The inherent ambiguity of this situation is explored in detail in a separate paper (Williams, 2004). Fetal pain The first quote is from a senior midwife who worked in a hospital where fetal surgery was being performed, and who attended planning meetings for such procedures: Midwife, 7: I must say I haven’t really thought about it [fetal pain], I really haven’t. Maybe I just don’t like to go down that route. But it’s an interesting oneyI don’t understand how fetuses wouldn’t feel pain. Do you know what I mean? So it makes absolute sense that it will feel pain, but I just somehow, it’s most bizarre, now that you’ve asked me that question, I kind of can’t make the leap. I just haven’t really thought about it. The next two quotes are from FMU midwives involved in fetal procedures, including feticide: Midwife, 20: Before a feticide, parents ask, ‘‘will he suffer?’’ To be honest we don’t know, we think probably not, but we don’t know, and I think we are too scared to really think about it. Midwife, 9: But when it comes to fetal pain, I don’t know—I really don’t know and I think it’s all very unclear, but I would say it’s 21 weeks—whether we say it’s before that I don’t know. Do they [fetuses] know what pain is to be able to perceive it as pain? But certainly, they react to having a needle stuck in their chest and their heart stopped with a drugy ARTICLE IN PRESS 2090 C. Williams / Social Science & Medicine 60 (2005) 2085–2095 An obstetrician who worked with these midwives, and was involved in carrying out such procedures stated: Obstetrician,15: I think there are reasonable grounds for thinking that the fetus doesn’t feel pain in the way we understand it before about 24 weeksy I think 22 weeks is a safe cut off point for the fetus not experiencing painyI must say, if parents ask me, I just say no. A gynaecologist who also performs late terminations of pregnancy said: Gynaecologist, 22: After 18 weeks if I do a feticide, I put a needle in the baby’s heartyI’m not sure it’s necessary, but I do it I suppose as a sort of PR exercise, because I think it’s important to be seen to be caring about the fetus if you see what I mean.. so I feel I need to do it, it’s the politics of caring about the fetusy When discussing a specific surgical procedure performed on a fetus, a fetal medicine consultant stated: FMU consultant,13: At 26 weeks, it’s possible that fetuses do feel some discomfort. It would have felt discomfort. We gave that fetus [names a drug] which is a pain killer, and also a paralysing agent..that was in part obviously to anaesthetise or give pain relief to the fetus, but the main objective was to keep the fetus still as we didn’t want it wriggling around. Clearly if the fetus is thrashing around it’s more distressing because it takes longer to do the procedureythere are a number of major connections on the frontal lobes that are required before pain is perceived as unpleasant, and that’s probably not before 26 weeks. The notion of fetal pain is a controversial one, being dependent on how pain is defined. Although there appears to be widespread agreement that neonates and fetuses launch a hormonal and neural response to invasive procedures, some would argue that this cannot be considered proof that there is a concurrent experience of pain (Derbyshire, 2003). Derbyshire argues: An experience [of pain] implies sensations have been interpreted in a conscious manner. Even when combined with observations of behavior and improved clinical outcome when using anesthetics, there is still no proof there is an experience of pain (2003, p. 3). The ‘improved clinical outcome’ refers to the fact that until the late 1980s, there was a widespread assumption that neonates and infants were incapable of perceiving pain, which meant they were seldom given pain relief for operations, including major surgery. Work carried out in the 1980s demonstrated that neonates given pain relief and paralyzing agents prior to surgery had improved clinical outcomes in comparison with neonates receiving paralyzing agents alone (Anand, Sippel, & AynsleyGreen, 1987). This research and subsequent studies culminated in a major reconsideration of neonatal analgesic practice (Anand & Hickey, 1992; Derbyshire, 2003). A study published in 1996 (de Lima, LloydThomas, Howard, Sumner, & Quinn) showed that by then, only a decade later, there was widespread agreement amongst paediatric anaesthetists that even the smallest, most premature babies respond to painful stimuli, and that attention to pain relief was an important part of neonatal anaesthetic practice. This shift has led to speculation as to whether or not the fetus, often of the same gestational age as the premature baby being treated, might experience pain. In the first article cited in the previous section, Giannakoulopoulos et al. (1994) demonstrated that intrauterine needling to obtain blood samples from fetuses at 20–34 weeks gestation resulted in a hormonal stress response (Derbyshire, 2003). However, critics such as Derbyshire (2003) believe that this response cannot be equated with the multidimensional phenomena he defines as pain. Some argue that in the absence of consensus, practitioners should assume fetal pain is experienced until proved otherwise, and act accordingly (Glover & Fisk, 1996). Others believe that this might lead to unnecessary anaesthetic procedures, and potentially increase distress for pregnant women undergoing procedures including late terminations of pregnancy or fetal surgery. Such debates have helped lead to the current lack of agreement about whether—or when—fetal pain might need to be considered, as illustrated by practitioners’ comments, with estimates ranging from 18 to 26 weeks gestation. Midwives 7 and 20 allude to the difficulties that some practitioners have in even thinking about the issue, whilst Gynaecologist 22 highlights the fact that this is a highly charged politically contested area, when he talks about ‘the politics of caring about the fetus’. Fetal patienthood All fetal treatment necessitates accessing the fetus through the pregnant woman’s body, and non-surgical treatments that may affect the fetus and mother have long been a part of pregnancy care. However, recent advances in fetal treatment, including fetal surgery, may mark a shift in the status of the fetus, and the impact on women. Fetal surgery is a complex procedure which requires the pregnant woman to undergo uterine surgery, often more than once, usually under general anaesthetic. Although fetal surgery is still unusual, worldwide the numbers appear to be increasing, and there is a move towards surgery for non-lethal conditions, as an editorial in the BMJ recently stated: Surgical intervention on the human fetus has been performed for more than two decades in the United ARTICLE IN PRESS C. Williams / Social Science & Medicine 60 (2005) 2085–2095 States, primarily at two centres. Recently, fetal surgery has become an international endeavour, with nearly a dozen centres worldwide. Also, until recently, only fetuses with life threatening defects were considered candidates for prenatal correction. Now fetal surgical procedures are being performed for non-lethal conditions (Farmer, 2003, p. 461). The first quote illustrates what one midwife thinks fetal surgery signifies about fetal status: Midwife, 23: If you’re even talking about surgery, then you’re going to see that baby now as a person because obviously something that’s a clot of blood or a developing thing that’s not human yet or not a baby, you’re not going to be talking about surgery. Following on from this notion that fetal surgery might equate with fetal personhood, the following quotes illustrate what might happen to mothers within this context: Midwife, 7: I’ve never heard much mention of the mother as the surgery is set upy so obviously the mothers are choosing to go through this major procedure, but the focus is on the fetusy the discussion is very fetus oriented and there is very little mention in those discussions ever about the motheryI’m amazed at what some women put themselves throughyand of course those are babies that not long ago you wouldn’t have been planning for at all because they wouldn’t have been surviving. So in terms of planning and managing the service the needs of the fetus in their own right are considerable really, and growing. Midwife, 6: ywe call it the Fetal Medicine Unit, but in fact that’s not true because you have to go through the mother in order to get to the fetus, and everyone is so preoccupied with what’s ok for the fetus that we actually forget what the mother has to go through yconsideration is given to the mother, but not to the same extent, and maybe that’s not a good thing. Although this research project did not interview women, one of the aims was to explore how practitioners felt that any changing perceptions about the fetus might impact on the status of women. The quotes above indicate how women have the potential to become less visible during discussions about fetal surgery, supporting the work of Casper (1998). Various reasons were put forward as to why women might opt for fetal surgery. In response to a question about whether women might feel under any pressure, a fetal medicine consultant said: FMU consultant, 8: Yes, I do, I doyand I think people want to feel that they’re doing—you always feel better don’t you, if you’ve done something rather 2091 than just do nothingyBut I mean the situation for them [couple] was, well, if it’s such a bad outlook anyway let’s do this, because it might give them a chance. Another fetal medicine consultant, talking about a couple’s decision to opt for fetal surgery, stated: FMU consultant, 13: They entered into it on a very altruistic basis, ‘‘Yes, we know this is experimental, we might be lucky—if we’re not we feel that we did the best for this baby but also that we might have contributed towards progress and a technique that might save somebody else’s baby’’, so quite altruistic about it. Recognising these potential pressures, an obstetrician talked about how she approaches the issue of fetal surgery with parents. This consultant felt that she had a different approach to that of her FMU consultant colleagues, because of her combined professional focus on both mother and fetus: Obstetrician, 15: I think there can be a lot of emotional pressure on parents. Now, I’m not saying that practitioners necessarily play to that pressure to be allowed to do their radical procedure, but I do think that unless you are very careful to be almost negative about the procedure, the parents will read into it that this is something that people do that hopefully will work. I think you have to be very careful there because it’s natural that most parents will grasp at any straw going and I think you have to be very straight with them about the experimental nature, if it is experimental. There appears to be an inherent paradox, whereby the potential transformation of the fetus into a patient may increase the responsibilities of the pregnant woman, whilst concurrently decreasing her visibility. Even in these quotes, the decision is talked about as being one that ‘parents’ make, although it is of course the pregnant woman who will be undergoing the surgery. There are also an increasing number of fetal conditions which are being detected by enhanced antenatal ultrasound, for which treatment is available post delivery. The following quote is from a nurse who specialises in the care of babies and children with cleft lip and palate. Here she describes her approach to pregnant women and their partners when the condition is diagnosed antenatally, which is becoming an increasingly common aspect of her work: Nurse, 24: I think the baby becomes much more of a person than it would without a diagnosisyI find it very helpful if I know if it’s a he or she, not itya lot of my work is talking about what will happen when the baby’s bornyI suppose I am trying to encourage ARTICLE IN PRESS 2092 C. Williams / Social Science & Medicine 60 (2005) 2085–2095 early bonding before the baby is even born, to help them more. I talk about it more as a baby than a fetus, as a person who has personality already. I ask the sex, name, I ask to see photos. To conclude this section, it appears that the increasing number of diagnoses of fetal conditions, leading either to fetal surgery or to treatment post delivery, at least has the potential to shift the status of the fetus towards that of a patient, with possible links to personhood. At the same time, this shift can alter the status of the pregnant woman, increasing her responsibilities, whilst potentially making her less visible. Discussion and conclusion In this article I have argued that debates about fetal pain and patienthood within the literature, combined with concurrent shifts in antental clinical practice, may be subtly altering UK practitioners’ perceptions of the fetus. Although I make no claims for the participants being ‘representative’, the research took place in two hospitals, and it seems likely that these shifting perceptions may not be unique to these settings. However, such claims must also be seen within the broader context. Although fetal surgery is still unusual in the UK, there is a recognition that pregnancy is being seen increasingly as an ‘at risk’ time, with every pregnant woman being offered an increasing number of screening—and diagnostic—possibilities (Petersen, 1999; Williams, Alderson, & Farsides, 2002a). As the recent Health Technology Assessment Review (Bricker et al., 2000) also points out, antenatal screening programmes such as first trimester screening by ultrasound, tend to ‘creep’ in, rather than being strategically introduced. As stated in the introduction, I see these issues predominantly as women’s health issues, which is why it is important to investigate the various ways in which women and others, including partners, families and practitioners, make fetuses meaningful in their lives. Mitchell argues that: being pregnant at this particular historical moment requires women to be tremendously socially adeptythe dichotomous language of self versus other, or a separate person lying inside the body of a woman, does not adequately reflect women’s diverse experiences of pregnancy and fetality. Neither does the assumption that women having ultrasound and reading advice books, will passively accept being controlled by dominant fetocentric messages (2001, p. 183). Recent research findings have shown pregnant women can be active agents, rather than merely passive victims, in relation to reproductive technologies (eg Weiss, 1995; Lewando Hundt et al. 2001). However, there is also a simultaneous recognition that women’s choices are made within the context of familial, social, cultural and economic constraints (Henry, 2003), and that practitioners can have a powerful ideological impact in, ‘shaping the understandings women have of what their experience of pregnancy should be, and how ‘responsible’ women should act’ (Kent, 2000, p. 179). For example, the offer of prenatal screening and testing can be seen by some women as a recommendation, and may help promote the idea that the condition being screened for is serious enough to at least contemplate termination of an affected pregnancy (Press & Browner, 1997). In a similar way, it could be argued that the offer of fetal surgery may be seen as a recommendation by some women, particularly when the alternatives appear bleak. This in no way implies that practitioners put any kind of overt pressure on women to follow one course or another, but it highlights the ethical dilemmas involved. As Obstetrician 15 noted, for her, discussing such procedures with women could mean ‘being almost negative about the procedure’. However, the current powerful rhetoric of individual choice and personal responsibility is set firmly within a consumerist discourse (Lippman, 1999; Kerr & Cunningham-Burley, 2000), and previous research with practitioners involved in prenatal screening (Williams et al., 2002a) found a reluctance to argue against individual consumer choice, as this links so closely with arguing against individual rights (Chadwick, 1999). It also goes against the ‘nondirective’ rhetoric which predominates in the area of prenatal screening and treatment, although the extent to which this approach is possible, or even desirable, has been questioned (Williams, Alderson, & Farsides, 2002c). The research findings highlight the possibility that both fetal surgery and the increasing detection of fetal conditions for which treatment is available post delivery, have the potential to shift the status of the fetus to that of patient, with possible links to personhood. However, whilst the fetus may become more visible, pregnant women were seen by some to become less visible. This ties in with a longstanding body of work (e.g. Oakley, 1986; Petchesky, 1987; Martin, 1993; Casper, 1998) which has linked other reproductive technologies such as ultrasound with the potential ‘erasure’ of women, whilst it simultaneously assists in the creation of the fetus as a subject (Kent, 2000). There was also a recognition that some women might feel a pressure, or responsibility to undergo fetal surgery. Layne (2003) argues that the women’s health movement itself, with its emphasis on individual control, has inadvertently resulted in women whose pregnancies end badly as blameworthy, and as responsible for their pregnancy losses. Beck-Gernshein (2000) also believes that with new options being offered in reproductive medicine, there are subtle signs ARTICLE IN PRESS C. Williams / Social Science & Medicine 60 (2005) 2085–2095 that blame is attached to women who do not act ‘responsibly’: yfreedom of choice is proclaimed as a basic right, with a great deal of goodwill and good intentionsybut on the other hand, there is the momentum of technology, and in gradual steps—albeit at first hardly noticeable—the concept of responsibility changes its content; it is being expanded and adapted along with the increasing options of technology (2000, p. 132). Further, Markens, Browner & Press state that, ‘ythis expansion of maternal responsibilities to the gestational period signals a shift in the focus of pregnancy from the health of the woman to the health of the fetus (1997, p. 353). It is such potential effects of increased prenatal screening and testing which recently led Getz and Kirkengen (2003) to stress the need for paying careful attention to the crucial distinction between technological development and implementation, and for, ‘scrutinizing the interface between prenatal testing and human experience’ (2003, p. 2045). Similarly, the slowly increasing recognition attached to taking fetal ‘pain’, or fetal stress responses into consideration, found in both the literature and interviews, may have the potential to shift perceptions of fetal status. In many ways, the demonstration of increased hormonal stress responses identified in fetuses (Giannakoulopoulos et al., 1994) partly mirrors the criteria which have led to the recent widespread acceptance and treatment of neonatal ‘pain’ (Derbyshire, 2003). Alongside this acceptance has come a growing recognition of the sophisticated abilities of even very premature babies (Wyatt, 2001, p. ii), and there is at least the potential of this recognition extending to fetuses, if the concept of fetal ‘pain’, or fetal stress responses becomes more widely accepted. Such shifts may also affect women in a variety of ways. For example, although this article does not address the abortion debate explicitly, there are obvious links between the concept of fetal ‘pain’ and the practice of abortion, particularly late abortions. When discussing the possible effects on women, Derbyshire (2003) points out that in the USA, the Minnesota Senate recently enacted legislation requiring clinicians to inform women of the possibility of fetal pain prior to performing abortions. As Mitchell (2001) argues, it is possible that we may, ‘need images that attach new meanings to pregnancy, fetality and abortion and that significantly reframe reproductive rights in terms other than maternal versus fetal rights’ (2001, p. 203). In conclusion, this paper does not provide conclusive evidence of a wholesale shift in terms of how the fetus is perceived by practitioners, but it does point to some subtle shifts occurring in relation to fetal ‘pain’ and fetal 2093 patienthood, which may or may not be significant. Although the concept of fetal patienthood does not directly link with personhood, it is one of a number of ‘rituals and practices’ being extended to fetuses, which can govern ‘person making’ (Michaels & Morgan, 1999). 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