Representing and intervening: ‘doing’ good care in first trimester prenatal knowledge production and decision-making
Address for correspondence: Nete Schwennesen, Steno Health Promotion Center, Niels Steensensvej 8, Gentofte 2820, Denmark
This article investigates processes of knowledge production and decision-making in the practice of the first trimester prenatal risk assessment (FTPRA) at an ultrasound clinic in Denmark. On the basis of ethnographic material and interviews with professionals facilitating FTPRAs in Denmark, we draw attention to the active engagement of health professionals in this process. Current professional and policy debate over the use of prenatal testing emphasises the need for informed choice making and for services that provide prospective parents with what is referred to as ‘non-directive counselling’. Studies focusing on professional practice of prenatal counselling tend to deal mainly with how professionals fail to live up to such ideals in practice. In this article we extend such studies by drawing attention to practices of care in prenatal testing and counselling. In doing so, we identify three modes of ‘doing’ good care: attuning expectations and knowledge, allowing resistance and providing situated influence in the relationship between the pregnant woman and the professional. Such practices may not be seen as immediately compatible with the non-directive ethos, but they express ways of reducing emotional suffering and supporting a pregnant woman’s ability to make meaningful choices on the basis of uncertain knowledge. As such, these practices can be seen as representing another (caring) solution to the problem of paternalism and authoritarian power. In opposition to an ethics aiming at non-interference (non-directiveness) such modes of doing good care express an ethics of being locally accountable for the ways in which programmes of prenatal testing intervene in pregnant women’s lives and of taking responsibility for the entities and phenomena that emerge through such knowledge production.
Current professional and policy debate over the use of prenatal testing emphasises the need for making informed choices and for services that provide prospective parents with what is referred to as ‘non-directive counselling’. An increasing number of studies have focused on how current regimes of choice give rise to complex processes of decision-making for pregnant women and their partners, who are obliged to choose and thereby take full responsibility for serious decisions on life and death, on the basis of partial risk knowledge (Franklin and Roberts 2006, Rapp 2000, Rothman 1986, Schwennesen et al. 2010). Health professionals play an important role as facilitators of choice and as administrators of the official policy of autonomy and the knowledge, technologies and choices that are made available to the pregnant women and their partners. Nonetheless, only a few studies have focused on how regimes of choice are perceived, reflected on and acted upon by health professionals and how difficulties are experienced and handled in professional practice.
Studies focusing on professional practice of prenatal counselling tend to deal mainly with how professionals fail to live up to ideals of non-directiveness (Anderson 1999, Brunger and Lippman 1995, Hunt et al. 2005, Lippman 1991, Lupton 1999, Petersen 1999, Pilnick 2008, Williams et al. 2002). Empirical studies have demonstrated that while counsellors generally strive for non-directiveness in counselling, in everyday practice they frequently depart from it (Brunger and Lippman 1995, Williams et al. 2002). This gap between ideals and practices has been described as a serious problem of power, which eventually limits the possibilities of choice (Petersen 1999). Exploring some of the difficulties health practitioners encountered when attempting to work non-directively, Williams et al. (2002) found ‘a variety of circumstances when nondirective counselling did not seem to be possible or to be the most appropriate response to the situation’ (Williams et al. 2002: 345). These circumstances varied from ‘acting in response to women’s requests for directiveness, to covertly making decisions on behalf of women’ (Williams et al. 2002: 345). On this basis Williams and colleagues suggest viewing prenatal counselling as a process that forms a continuum between choice and coercion and request ‘discussions as to which – if any – aspects of directiveness are acceptable and which are not’ (Williams et al. 2002: 345). In this article we wish to extend this discussion by relating it to the question of care. Whereas Williams et al. take as their starting point the ideal of non-directiveness for characterising, assessing and understanding professional practices, we take the clinical practices of care as a starting point for our analysis. In doing so, we are inspired by recent scholars in the field of science and technology studies (STS) who have taken up the question of care in relation to health practice (Despret 2004, Mol 2006, 2008, Mol et al. 2010, Pols 2003, Struhkamp et al. 2009). These scholars have been critical of the way in which abstract ideals such as autonomy and non-directiveness have come to colonise discussions on how to improve healthcare practices. We share this concern and seek to contribute to this move away from abstract ideals by articulating practices of care in the context of prenatal testing and counselling in Denmark, on the basis of ethnographic material.
The Danish case
New guidelines were issued by the Danish Board of Health in 2004 announcing a ‘paradigm shift’ from a paradigm of prevention towards one of self-determination (Danish Board of Health 2004). The Board wanted to signal a movement away from the previous practice of prenatal testing which, they argued, represented a prevention-oriented paradigm as it was organised around particular screening criteria such as age: only pregnant women of or above 35 years of age or women with a known increased risk of giving birth to a child with a chromosomal disorder were automatically eligible for prenatal testing. To counter what the Board considered a problematic prevention-oriented paradigm of the past, a new aim of future prenatal testing was introduced: the aim of informed choice. The main success criterion for the programme was therefore formulated as facilitating a space for action for the pregnant woman, where she would be able to make a decision in accordance with her own values and beliefs (Danish Board of Health 2004). Accordingly, it was emphasised that neutral information and non-directiveness in counselling was a precondition (Danish Board of Health 2004). This concurs with the general approval of the ideal of informed choice (Marteau et al. 2001) and the principle of non-directiveness in prenatal counselling1 (Clarke 1997, Harper 2004, Harris et al. 1999, Hunt et al. 2005, Williams et al. 2002) and expresses a current tendency in European and American countries to frame choice and objective information as an obvious solution to what is considered a problematic prevention-oriented past of prenatal testing.2
The guidelines paved the way for introducing the technology of the first trimester prenatal risk assessment (FTPRA) offered to every pregnant woman in Denmark, regardless of age. The FTPRA is performed during the 11th to 13th gestational weeks and is a non-invasive method based on an ultrasound scan and maternal serum markers. It is considered one of the most effective non-invasive screening technologies for Down’s syndrome and other chromosomal abnormalities (Nicolaides 2004, Williams et al. 2002) and has increasingly become a routine element of antenatal care in European countries (Pilnick 2008) and in the USA (Hunt et al. 2005). Denmark is a unique case: it is the first country in the world to introduce an FTPRA as a public health offer to every pregnant woman, regardless of age and risk situation and is free of charge.
Today, the FTPRA has become an almost routine part of pregnancy in Denmark. A recent study on the uptake of the FTPRA in Denmark shows that only 2% of couples offered an FTPRA during 1 July–31 December 2005 actively refused the offer. It is estimated that the overall current take-up is at least 90% which, to our knowledge, is one of the highest population uptakes worldwide (Tørring et al. 2008). In the Copenhagen area, where this study was conducted, take-up is estimated to be more than 95% (Tabor 2006, personal communication).
From non-directiveness to modes of doing good care
In the following we do not intend to evaluate whether the new ideals of non-directiveness and choice are actually realised in practice. Rather, we study the process through which knowledge and decisions are made in FTPRA trajectories. With inspiration from scholars in STS we adopt a constructivist ontology, which states that entities are not pre-existing practice but are entangled with each other in socio-material networks and gain their specific qualities through these relations (Latour 1987, Law 1994, Mol 2002). According to Rehmann-Sutter (2009) non-directiveness can be defined as providing completely unbiased information and a restraint from giving practical advice. From the perspective of STS, however, non-directiveness (understood as providing completely unbiased information) becomes absurd. Rather, attention is drawn to the acknowledgement that knowledge production is an intervention in itself with serious implications for those involved. As Foucault and Hacking have already taught us, knowledge may be conceived of as a powerful intervention, which brings forth new identities and relationships (Hacking 1986, Foucault 1978). If we take this point, the question of how to do good in health care practice can no longer meaningfully be thought of as how to avoid interference (non-directiveness) since knowledge production in itself – objective or not – must be conceived of as an intervention. Instead, attention is drawn to questions of interference, such as how to interfere with and be accountable for the new entities and phenomena that emerge through such knowledge production. If we apply this framework to the analysis of the FTPRA, we can think about it as an emergent process of knowledge production through which new forms of associations between humans and technology are made possible and new phenomena such as life and risk are made to matter. Who the pregnant woman is (mother/pregnant woman, responsible/irresponsible, empowered/victimised) and what the fetus becomes (human/non-human, low risk/high risk) might potentially change through the socio-material associations the pregnant woman engages with when she undergoes an FTPRA. This translation is symmetrical; the technologies involved in an FTPRA (the ultrasound scan, the risk assessment), what they are and what they do might also undergo a change.
In the following we identify modes of doing good care (Pols 2003) as they are played out in the process of knowledge production and decision-making in FTPRA trajectories. We define modes of ‘doing’ good care as a temporal way of ordering practice in entities (such as the human, the non-human, life, risk) which together form a pattern of relational meaning directed towards ‘the good’ (Boltanski and Thévenot 1991). We articulate such modes in relation to two obligatory points of passage (Latour 1987) that women and partners must go through during an FTPRA: (i) the performance of the ultrasound scan and (ii) the communication of a risk figure and the subsequent decision about what to do on this basis. We frame those points of passage as constitutive for the making and remaking of boundaries around life and risk and illustrate how such ordering practice happens through a temporal process of attunement (Despret 2004, Mol 2008) where hopes, expectations, technologies and humans are continuously made and modified in the clinical encounter.
Over six weeks in 2005, the first author (NS) undertook observations of practice and had several informal conversations with sonographers at a Danish ultrasound clinic. During the observations of practice, NS focused particularly on problematic situations, how they occurred and how they were attempted to be handled in practice. In addition, six sonographers and one consultant (originally trained as a medical doctor) who teaches a certification course, were interviewed. The sonographers were presented with the problematic situations identified during participant observation and asked how they would attempt to handle such situations. They were also asked to define and give practical examples of problematic situations, explain why they saw those situations as particularly problematic and how they handled the situation in practice or how they would ideally handle the situation in practice. This method of articulating professional self-reflection is suggested by Mol (2006).
The sonographers were interviewed in their working hours and were chosen at random according to whichever sonographer was at work when the clinic schedule allowed time for an interview. The sonographers interviewed had between one and twenty years’ working experience in the field and were aged 30 to 50 years. All of them were women and were living in Copenhagen or in the suburbs of Copenhagen. Two interviewees had originally trained as midwives and four as nurses; all were trained as sonographers according to the certification programme developed by the Fetal Medicine Foundation, based in the UK, emphasising correct measurement of ultrasound images, the statistics behind the risk calculation and the facilitation of informed choice through non-directive counselling.3
In relation to previous work, NS had also conducted 14 semi-structured interviews with pregnant women undergoing an FTPRA and their partners. This work has been published elsewhere (Schwennesen 2011, Schwennesen et al. 2009, 2010, Schwennesen and Koch 2009). Although these interviews are not analysed in this study, they framed our understanding of practice and are drawn on occasionally.
This study is not representative of professional practice of the FTPRA in Denmark or in general. The main contribution of this study is its attempt – through detailed empirical material – to illustrate the actual process through which knowledge is made in a particular institutional setting of the FTPRA and to articulate the different ways in which professionals seek to intervene in this process with care. Our hope is that such articulations may inform current debate on how to improve healthcare in prenatal testing and counselling.
There follows below an analysis of the two obligatory points of passage women and partners have to go through during an FTPRA: the scan, and the receipt of a risk figure and the subsequent decision. Within each point of passage we describe particular problematic situations as experienced by sonographers and articulate how such situations are handled with care.
The first point of passage: the ultrasound scan
Entering the scan; attuning knowledge and expectations
The pregnant woman4 will be informed about the possibility of undergoing an FTPRA at the first pregnancy check-up with her general practitioner around week 8 of pregnancy. If she decides to attend an FTPRA she must book an appointment over the internet or by telephoning the hospital. Before attending the ultrasound scan, a serum test must be taken at the hospital between weeks 9 and 13. The ultrasound scan is undertaken between weeks 11 to 13 of pregnancy and after the scan a final overall risk calculation is made and communicated to the pregnant woman. This provides the basis of whether an invasive test to obtain fetal material (amniocentesis or chorionic villus sampling) is offered. Such tests are diagnostic but involve the risk of inducing a miscarriage of a healthy child (around 1%) (Tabor et al. 1986).
In Denmark the FTPRA has become an almost obligatory point of passage for women on the trajectory towards giving birth. The entry into an FTPRA may therefore be described as a ‘default pathway’ (Webster 2007: 47) for pregnant women on the normal trajectory towards having a (healthy) baby, rather than an act of choice. This point is also made by a sonographer (S2): ‘It is not something you choose, it is just something you do, it has become an act of routine’.
In interviews with NS the sonographers explained that they often experienced a problematic discrepancy between a woman’s positive expectations when she enters the scanning room and their own professional understanding of the scan as a screening tool. One sonographer5 says:
S1: The attendees and the professional have two different approaches to the scan. We are trouble-shooters and perform the scan as part of a technology that aims to find something which is abnormal. At the same time many couples come with a positive attitude, where they expect everything to be fine and that they will have a look at their fetus for the first time.
The problematic situation referred to illustrates a gap between the woman’s expectations of the scan as a technology of life confirmation and the underlying rationale of the FTPRA of identifying high-risk fetuses in order to prevent disease. The sonographers, however, enact the FTPRA as a screening technology to identify fetuses at risk with the aim of preventing disease. In cases where the resulting risk figure is interpreted as low risk, the pregnant woman’s hope and expectations will be confirmed, as she will go home with a printed ultrasound picture, proving this to be the case. When the resulting risk figure is interpreted as high, however, the potentiality of a ‘risky’ future is brought into the present. In such cases the gap between the pregnant woman’s expectations and how the risk assessment actually plays out, may show itself in feelings of shock, sadness and grief when she is confronted with the message of being classified as high risk.
To protect women from what the sonographers describe as ‘unnecessary shock and nervousness’, they explain how they attempt to reduce the gap by trying to reach a shared understanding of, and expectations about, what the FTPRA is before they start scanning. In doing so, the sonographers emphasise the importance of trying to get to know more about the particular pregnant woman by asking questions about background, family situation, previous experiences with the FTPRA and so on before they start scanning in order to adjust information and attune expectations. As one sonographer says:
S3: They may be very nervous or they may have several other things going on in their lives, which take up a lot of space, such as a sick child, divorce or illness … they are positioned in different situations and have different informational needs.
By asking about the family situation and past experiences, the sonographer creates a space where the pregnant woman is invited to express her past experiences and expectations. We suggest that this is done to articulate the pregnant woman into a relationship through which knowledge and expectations can be managed and attuned. Accordingly, the sonographers attempt to reduce the gap between what is expected from undergoing an FTPRA and what might actually happen during the trajectory of the FTPRA. This is an important element for the realisation of an informed choice; it also serves the purpose of managing expectations.
One dimension in this mutual adjustment is the sonographer’s attempt to manage the way in which a woman will react to a potential future message of being at high risk after the risk assessment has been done. A sonographer explains:
S4: Before I start scanning I … emphasise that it is a risk assessment, which does not say anything about whether the fetus is diseased or not. I make sure I emphasise that the outcome is only a risk figure.
S4: And then I say that the Danish Board of Health has made some guidelines, so if you receive a risk figure which is lower than 1:300, then you will continue pregnancy as usual. But if the risk figure is higher than 1:300, then we will talk about the possibility of undergoing extra examinations.
S4: I emphasise that this does not mean that the fetus is necessarily diseased. If you make sure of emphasising this point, then only a few pregnant women will go into shock if they receive the message that they have received a risk which means that more examinations will be offered [high risk].
By making sure she tells the woman that the FTPRA is ‘only’ a risk assessment, the sonographer creatively attempts to manage the meaning of the message of being classified as ‘high risk’. Below, a sonographer explains how she consciously tries to transform a risk figure which (according to the cut-off) is categorised as high risk into a positive result, which will give access to further testing possibilities. The sonographer reflects on how she has changed the language she used to frame risk results to the women:
S5: When we started this programme, I described the two groups [below and above the cut-off point] as low risk and high risk, but today I make sure I do not say high risk any more.
NS: Why is that?
S5: I think high risk sounds like an alarm bell and my experience is that they become unnecessarily nervous and upset if I use this category, so now I only describe the categories as two groups where one of the groups will lead to the positive offer of undergoing further examinations.
To protect the pregnant woman from unnecessary anxiety, the sonographer transforms the category of high risk into a positive message. Accordingly, the sonographer actively tries to manage the way in which the message will be understood in a potential future space of action and decision-making. If we look at these strategies of attunement in the light of the ideal of non-directiveness, understood as providing completely unbiased information, such strategies would be condemned as wrong or bad. The sonographer tries actively to engage in how risk will be understood and reacted upon in the future. However, this is not done with the aim of wanting the woman to act in specific ways but rather with the aim of protecting her from future emotional suffering in the case of being categorised as high risk.
Attuning life during ultrasound
Attuning knowledge and expectations is mentioned as a mode of doing good that has to be continuously attended to by the sonographer throughout the trajectory of the FTPRA. Another important dimension of this mode of doing good is the attunement of the meaning of the fetus through the practice of ultrasonography. At the point of pregnancy where an FTPRA is undertaken (weeks 11–13) the woman has rarely felt the fetus move. Many pregnant women say that that at this stage the pregnancy seems unreal (Schwennesen and Koch 2009). Seeing the image on the ultrasound screen, however, has the potential of escalating the social birth of the baby, thereby speeding up the creation of new identities of fetal subjecthood and maternal responsibility (Drapley 2002, Mitchell 2001, Taylor 2000, Sandelowski 1994, Schwennesen and Koch 2009). In interviews the sonographers reflect on how to be actively involved in the performance of the image on the screen in order to relate to the transformative effects it may have on the pregnant woman and her relationship to the fetus. A sonographer explained:
S3: I have thought a lot about the fact that if a fetus ends up being categorised as high risk and if you, during ultrasound, have said that ‘oh, this is sweet, there is a little arm there and you can hear the heart beat’, then the woman will develop another relationship to the fetus, which is different if you have only seen pregnancy through a mark on a strip, right? During ultrasound you will both see it and hear it, right? Having seen it on a screen is different from knowing it intellectually. I think that we should not be too enthusiastic about how fantastic it is to see the fetus on the screen.
To be accountable for the possible future emerging in the case of high risk, the sonographers emphasise the importance of paying particular attention to their body language and which interpretation of the image they promote. Petchesky argues that ultrasound ‘images by themselves lack “objective” meanings’ (Petchesky 1987: 78) and therefore the different shades of grey emerging on the ultrasound screen need to be interpreted for the image to become meaningful in practice. This fundamental lack of meaning of ultrasound images provides a space in which different meanings of the image may be crafted during ultrasonography (Drapley 2002, Haraway 1997, Mitchell 2001, Schwennesen and Koch 2009). The sonographers explain how they try to accommodate their body language and the interpretation of the image on the screen to the emerging results in order to protect the pregnant woman from any future negative surprise. If during the scan the sonographer sees signs that a (problematic) high risk will be calculated, such as a large nuchal translucency or a nasal bone that is difficult to define, she will distance herself from the woman and not engage in any dialogue about what is seen on the ultrasound image. By doing so, she attempts not to contribute to the enactment of the image on the screen as a living child. Conversely, if the sonographer expects that a (non-problematic) low risk will be calculated, she will be more engaged in the enactment of the fetus as life by saying things like, ‘this one is active’ and ‘this one is waving to you’. Such caring practices may be seen as strategies through which sonographers actively try to manage hope before, during and after ultrasound in order to shape the potential future space of decision-making in the case of a high-risk classification.
Second point of passage: communicating risk with care
What is articulated in the analysis above is a realisation that life and risk are not entities transmitted from the sonographer to the pregnant woman in a non-directive manner. Instead, the meaning of life and risk evolves through a relationship of attunement, where the sonographer is actively and consciously involved. This process of meaning-making continues throughout the trajectory of the FTPRA where the next passage point is the situation where a risk figure is communicated and a decision has to be made on how to act on this basis. In the following we articulate a second mode of doing good as ‘allowing resistance’ in the clinical encounter of risk communication and decision-making.
The cut-off point and the regulatory framework of prevention
After the scan the pregnant woman must wait for the final risk result in the clinic’s waiting area while the sonographer goes into another room where she types the result of the scan into a computer. Together with the data from the serum test, she calculates the overall risk result. The result of the test is presented to the pregnant woman as a risk figure on an infinite scale and it could be 1:50, 1:350 or 1:20,000. In cases where the risk figure is assessed as high according to a cut-off point (1:300), it will automatically open up a space of possible preventive action as it gives access to undergo an invasive test.
The cut-off point expresses a norm of effective prevention; it is settled on the basis of complex cost-benefit calculations made with the aim of defining a limit of access to invasive testing that most effectively distributes pregnancies into the categories of high risk (requiring an invasive test) and low risk (not requiring a test). This calculation is based on a large sample of epidemiological data (Nicolaides 2004) and expresses a relationship between the detection and false-positive rates and economic cost. There is a trade-off between these factors and where the exact limit is set is not objectively evident, but it is based on normative and political decisions balancing the different interests. The sonographers explain that they realise that the cut-off point might influence their own professional interpretation of a risk figure as either good or bad. One sonographer said:
S6: A figure is not just a figure. Working with prenatal testing within this framework makes me think that when a risk figure is around 1:300 then it is not a good situation. It is not nice for me to go out and deliver such a result.
This illustrates the way in which the cut-off point may regulate sonographers’ interpretation of risk in certain ways. Latour (1987) developed the concept immutable mobile to capture the ways in which standards (cut-off points) are capable of translating interests across time and space. We may understand the cut-off point as such a standard, which may possibly transport the rationality of effective prevention into processes of decision-making.
Allowing resistance in processes of knowledge production
In interviews, sonographers acknowledge that they are placed in a powerful position, which involves an inevitable influence on how risk is understood. The challenge for the caring sonographer is, according to the sonographers (for instance, S4): ‘not to force one’s own view – or the institutional frameworks’ opinion upon them, when you present them with the answer’. The sonographers describe practices of care as an art that requires empathy, obligingness, openness and a continuous judgement of the situation. A sonographer sums up the challenges she faces thus:
S1: You have to be careful not to make the process of the FTPRA too standardised, that you make sure to spend time on each person you are confronted with and come to understand their background and their expectations and their views and then take a bearing on that, so that we do not misunderstand each other. This is an art, which sometimes succeeds and sometimes doesn’t.
A number of social science scholars have studied the implications of an increasing use of risk in the context of pregnancy and prenatal testing (Ettorre 2002, Helén 2005, Lippman 1991, Lupton 1999, Weir 1996). While such scholars seem to emphasise the disciplining effects of risk knowledge and the control and constraints on action derived from such knowledge, professional practices of care open up possible ways in which the provision of risk knowledge might allow space for agency and the emergence of alternative notions of risk. Using the example of knowledge production in the context of animal experiments, Vinciane Despret makes a convincing argument about care and its relationship to the workings of power. She argues that power works, not as a deterministic force but through processes of mutual expectations and trust, which make entities available to emerging in particular ways (Despret 2004). In the context of animal experiments, the mutual relationship and expectations between the experimenter, the animal and the organiser of the experiment together determine what the animal is allowed to become (for example, dull or intelligent). In this regard, Despret describes the role of a caretaker as someone interested in the possible ‘becoming’ of identities in processes of knowledge production without steering into normative evaluations of how it should become. She contrasts the role of a caretaker with that of a judge or a master, who require docility from the entities through which knowledge is made (Despret 2004: 123). According to Despret, the possibility of ‘resistance’ in processes of knowledge production determines whether the setting produces passive or docile bodies or bodies that are cared for. If we apply this to the professional practice of the FTPRA, the task for the caring sonographer is to provide a space for the pregnant woman where she is allowed to act in unexpected ways and articulate alternative notions of risk. This requires attention to the specific pregnant woman and her particular situation, and a continuous openness to unexpected articulations and transformations of risk. This form of attunement and continuous situated awareness in the process of the FTPRA is particularly important if we take the transformative capabilities of an FTPRA into account. Several sonographers emphasise that a pregnant woman’s notion of risk and wishes and values might change during the course of an FTPRA. The consultant says:
C1: It might be that a pregnant woman and her partner attend an FTPRA with an idea that they will accept the offer of undergoing an invasive test if the fetus is classified as high risk. But in that situation they do not expect that they will receive a high risk, it is not what they expect or hope for when they come to us in the first place, right?
C1: But that situation changes and their wishes might change too in the case of being classified as high risk and then we have to allow them to make another choice [of saying no to the offer], right?
NS: So you feel that the pregnant woman’s wishes and values might change by undergoing an FTPRA?
C1: Yes, that’s for sure, yes!
The sonographer emphasises the importance of allowing a woman to change her mind during the course of undergoing an FTPRA. In such situations the challenge for the caring sonographer is to allow the pregnant woman to resist by understanding risk and acting in ways different from what is implicitly intended by the cut-off point or what the sonographer immediately would expect from her.
‘What would you do, Doctor?’ Situating influence in the context of uncertain knowledge
A particularly difficult situation for sonographers arises when a woman asks for their professional opinion. The sonographers’ articulations of how to respond to such a question, reveal a third mode of doing good, which we express as ‘situating influence’. According to the definition of non-directiveness by Rehmann-Sutter (2009), non-directiveness involves restraining oneself from giving practical advice. Thus, giving direct advice is considered off limits. A common expression from our interviews with pregnant women was their feeling of being left in limbo in the face of complex risk knowledge and their continuing search for tools that could be used to make the risk figure meaningful and thus actionable (Schwennesen et al. 2010). Below is an excerpt from an interview with a woman who received a risk of 1:164. During the interview she expressed the frustrations she felt when being told to make her own decision on the basis of what she considered a meaningless risk figure. In an attempt to make sense of how to act, the woman reacted, almost by reflex, by asking the health professional what she would do if she was in her situation. She said:
I tried to talk to the sonographer who informed me about the risk. ‘What would you do?’ was my first question, right, ‘What would you recommend me to do?’ and she said that she could not tell me anything at all. But I felt immediately that I needed something to compare with. A number is just a number, right. I work with numbers all day and I know that you can perceive a number from 1000 different views, right, and it will mean something different every time.
This woman expressed a common frustration among women and partners having to make a decision on the basis of partial risk knowledge. While the official guidelines emphasise the ideals of non-directiveness and autonomy in decision-making and in so doing configure the relationship between professional and patients in the direction of patient authority, the pregnant woman seeks to reinstall authority in the sonographer by asking for advice. In doing so, the sonographer is re-authorised to act as a paternalistic expert and is asked to articulate her experienced advice. Authorisation refers here to a relationship where one party authorises another by communicating faith and trust in the ability of the other to act competently and in accordance with the expectations expressed by the first party (Despret 2004: 120). We might understand a pregnant woman’s question such as ‘What would you do in my situation?’ as an attempt to avail herself of the sonographer’s expert evaluation of the situation and as expressing a resistance to the delegated role of authority in processes of decision-making.
In describing to NS how she would tackle a situation where a pregnant woman asks for her advice, a sonographer (S2) explains: ‘Usually I reply that I have never experienced such a situation myself and for that reason I do not know how I would react. You are the only one who can make such a decision’. With this reply, the sonographer acts ‘correctly’ according to the regulatory framework of non-directiveness, by resisting the authorisation of her as a paternalistic expert and in response installs the pregnant woman as an expert who has to make her decision herself according to her own values and needs. However, several sonographers express concern about not leaving a pregnant woman ‘behind’ and emphasise their obligation to provide her with meaning-making tools to navigate in the complex sea of information she is presented with. In this situation, caring for the pregnant woman by providing meaning-making tools and the ideal of non-directiveness seem to clash.
One sonographer (S1) explains how she tries to accommodate those two ideals by providing statistical data on how other women have reacted in the same situation. She says: ‘I may tell them that most Danish citizens would do x, if they were in your situation: this is often helpful’. By making this selected statistical data available to the pregnant woman the sonographer attempts to support her in the process of creating existential footing and reaching a meaningful decision. In her view this strategy does not conflict with the ideal of non-directiveness. She says:
S1: This is only statistics … we know what people do and what they don’t do. This is completely neutral knowledge and they can use it as they want: most people are happy with that.
For this sonographer, making statistical data available becomes a means through which she can both live up to the ideal of non-directiveness and accommodate the pregnant woman’s request for professional influence and advice. This process occurs through a transformation of the understanding of what neutrality means. With this transformation she becomes able to guide the pregnant women in a fashion that does not violate the non-directiveness principle but, nevertheless, helps the pregnant woman to gain existential footing in the decision-making process.
The sonographer enacts knowledge as something that can and should be articulated responsibly to the particular pregnant woman to support her in her own decision-making, taking her particular situation into account. Another sonographer said:
S4: So you are placed in a very powerful position, but if you are aware of that, then you become able to differentiate the knowledge and use it to guide them through the decision-making process and help them to arrive at a place that you sense they will feel the happiest about, right?
This sonographer emphasises how she tries to use knowledge to support and guide the individual woman in her decision-making process. Whereas one could argue that such a form of conscious knowledge differentiation would work against the principle of non-directiveness and thus the possibility of the pregnant woman’s ability to make an autonomous decision, such practices may be understood as exactly what makes decision-making possible in a situation where complex risk knowledge is experienced as basically meaningless. It illustrates a point from STS that individual reflexive action, such as choice, is possible only in a heterogeneous collective network (Callon and Law 1997).
If we acknowledge that meaningful decisions are made through interdependent relations, we suggest that a careful professional response to the question ‘what would you do in my situation?’ might be for sonographers to accept the authority which is trustingly delegated to them and provide pregnant women with situated influence or advice. This would represent a shared responsibility for the process of decision-making and the decision which is to be made. According to Despret, what makes the difference between requiring docility and giving care in such situations is the extent to which the pregnant woman is allowed to resist her allotted role and what is expected from her in the process and to act in unexpected ways, for instance, by challenging the advice given. We might conclude with Despret that ‘to fulfil expectations, to be available to others’ beliefs or concern is not necessarily [our italics] to obey these expectations or beliefs’ (Despret 2004: 123). From this perspective, influence or advice may be seen as an act of care if the pregnant woman is simultaneously allowed to act in unexpected ways.
In the last three decades or so, ideals of autonomous choice and non-directiveness have increasingly been framed as obvious solutions to what is considered as the problem of paternalism and authoritarian power in past programmes of prenatal testing and counselling. The new Danish guidelines on prenatal testing constitute an exemplary way in which such ideals are increasingly dominant in current regimes of prenatal testing in European and American countries. Framing the problems and solutions about current regimes of prenatal testing through the lens of choice, however, tends to collapse the debate about how to do good in prenatal testing and counselling into questions evolving around issues such as how to make non-directive counselling possible and how to make sure that autonomous choices can really be made. Such questions rely on an image of knowledge as stable facts that can be transmitted in a value-neutral manner from professional to pregnant woman. It implies a model of communication where the relationship between professional and pregnant woman and her partner is (ideally) stripped of any socio-material interaction and presents the professional job as purely technical: the sonographer has only to reveal already existing facts and communicate them to the pregnant woman and her partner in a non-directive manner.
Whereas such a representationalist view on fact production operates with a static and essentialist view on facts, this study illustrates that notions of life and risk are made and managed through the sonographer’s continuous and active engagement in the production of facts throughout FTPRA trajectories. Knowledge of life and risk is not transmitted from the sonographer to the pregnant woman in a non-directive manner but evolves through relationships of attunement, where the sonographer is actively and consciously involved. We have thus shown how the clinic is a site where medical knowledge is creatively produced in the clinical encounter rather than simply consumed (Latimer et al. 2006). This process is not predetermined, but needs to be approached as a relationship between the institutional framing of risk, the clinical organisation, the sonographer and the pregnant women’s particular situation.
A gap between official ideals and practice is documented in the present study, in alignment with other studies (Anderson 1999, Hunt et al. 2005, Petersen 1999, Williams et al. 2002). Whereas such a gap has been described as a serious problem of oppressive power perhaps resulting in coercive moments of decision-making, this study opens up for ‘modes of doing good care’ as other, more practice-based, solutions to the ‘problem of power’ in prenatal counselling. We would like to emphasise three modes of doing good care which come to the fore in our study: (i) a continuous attunement of knowledge and expectations, (ii) providing space for allowing resistance in the process of prenatal knowledge production and decision-making, and (iii) providing situated influence in the context of uncertain and ambiguous knowledge and acceptance of a shared responsibility for the decision which is to be made, in situations where authority is trustingly delegated to the sonographers. Such modes are not compatible with the non-directive ethos but express ways of reducing emotional suffering and supporting a pregnant woman’s ability to make meaningful choices on the basis of uncertain knowledge. In opposition to an ethics aiming at non-directiveness and autonomous decision-making, such modes of doing good care express an ethics of being locally accountable for the ways in which programmes of prenatal testing inevitably intervene in pregnant women’s lives and of taking responsibility for the entities and phenomena that emerge through such knowledge production.
If we wish to relate to the question of how to do good in prenatal testing and decision-making, we must start from the premises that prenatal knowledge production is an intervention in the categories through which pregnant women come to experience themselves and their relationship to others and that decisions are made through interdependent practices (Struhkamp 2005). Accordingly, we have to draw our attention away from questions of correspondence (how to represent facts in an objective manner) towards questions of intervention, such as how to intervene in temporal knowledge production and decision-making with care. To be care-fully involved in processes of knowledge production, within an organisational and health political framework with multiple objectives such as prevention and choice, requires difficult and creative work. Such inventive creative work is rarely recognised as being valuable in current regimes of choice. This article is an attempt to articulate caring practices to make them available for recognition, appreciation and assessment as well as for critical reflection and discussion.
Non-directiveness has been increasingly criticised in professional literature on prenatal counselling (Weil et al. 2006) and has been complemented by the model of shared decision-making (Elwyn et al. 2000: 138). Despite the critique, non-directiveness continues to be the ethical gold standard against which professional practice is assessed.
See, for instance, the UK Human Genetics Commission (2006) report entitled ‘Making babies: reproductive decisions and genetic technologies’.
The Fetal Medicine Foundation is a charity foundation headed by Professor Kypros Nicolaides that has developed an international training programme for conducting the FTPRA. See Fetal Medicine Foundation (2010).
In most cases the woman will attend the FTPRA together with her partner. In the following I focus on the woman and do not make visible the ways in which pregnant woman and their partners may experience the process of undergoing an FTPRA in different ways. See Drapley (2002) for an illustrative example of how gender plays a significant role for the experience of undergoing ultrasound.
The sonographers had the following years of experience. In order to maintain their anonymity their experience is listed in intervals: S1: 16–20 years, S2: 1–5 years, S3: 11–15 years, S4: 11–15 years, S5: 6–10 years, S6: 6–10 years, C1: 10–15 years.
This article was written in partial fulfilment of a PhD project exploring the social implications of first trimester prenatal risk assessment in Denmark, which was funded by Bio-campus, research priority area, Copenhagen University. We thank Mette Nordahl Svendsen, Henriette Langstrup Nielsen and two anonymous reviewers for constructive comments on earlier drafts.