Framing the fetus in medical work: rituals and practices

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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
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doi:10.1016/j.socscimed.2004.09.003
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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
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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
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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
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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.
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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
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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
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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
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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
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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).
It would seem important to closely track such subtle
changes, primarily because of the potential impact for
women, but also, for others involved with the production and construction of fetuses, including practitioners.
Although international comparisons are of course
useful, such tracking needs to be set within specific
cultural and policy contexts.
Acknowledgements
I would like to thank all those who participated in this
research, and acknowledge the support of the Wellcome
Trust Biomedical Ethics programme in funding my postdoctoral fellowship. I also thank the referees, whose
perceptive comments have greatly improved the paper.
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