Patient-Centred IVF

Bioethics and Care in a Dutch Clinic

Trudie Gerrits

• Publisher: Berghahn Books
• Year: 2016
• ISBN:
  9781785332272
• Edition: 1
• Topic: Medicine
• Subtopic: Gynecology, Obstetrics & Midwifery

Contemporary Dutch policy and legislation facilitate the use of high quality, accessible and affordable assisted reproductive technologies (ARTs) to all citizens in need of them, while at the same time setting some strict boundaries on their use in daily clinical practices. Through the ethnographic study of a single clinic in this national context, Patient-Centred IVF examines how this particular form of medicine, aiming to empower its patients, co-shapes the experiences, views and decisions of those using these technologies. Gerrits contends that to understand the use of reproductive technologies in practice and the complexity of processes of medicalization, we need to go beyond 'easy assumptions' about the hegemony of biomedicine and the expected impact of patient-centredness.

Chapter 1

STUDYING ARTs

THEORY, CONTEXT, THE CLINIC AND METHODS

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Understanding the Use of ARTs

This book, while focusing on the workings and effects of a patient-centred fertility clinic, strongly builds on previous work in this area and in particular on social science studies regarding the medicalization of infertility and the use of ARTs. Over the last three decades, many social science scholars, including feminist and medical anthropologists, have studied ARTs and their manifold ramifications for social life, such as in the domains of marriage, kinship, gender, medicine and religion (Inhorn and Birenbaum-Carmeli 2008).¹ In her seminal overview of feminist scholarship on ARTs, Charis Thompson (2002, 2005) distinguishes two different phases/generations of social science scholars and points out differences among radical and more liberal feminist critiques. Below, following Thompson to a certain extent, I briefly sketch an important turn in ART social science scholarship: from being focused mainly on dominant discourses to, as I see it, a more nuanced understanding of women’s (and men’s) views and experiences.²

Pronatalist and Patriarchal Imperatives

Radical feminists (in the 1970s and 1980s) tended to explain and critique women’s persistent use of ARTs by pointing to the pronatalist and patriarchal imperatives that informed the ‘development, deployment and use’ of these technologies (Sandelowski 1991: 34). As Sandelowski phrased it, radical feminists depicted women with fertility problems as (ibid.):

[C]ompelled by their male doctors and their male partners to undergo medical treatments for infertility because of the strong cultural pressure for married couples to have children of their own and for women, in particular, to demonstrate their normality as women by reproducing.

This view should be understood in the light of second wave feminism, where (radical) feminist scholars strongly criticized the ongoing medicalization of childbirth, as this placed motherhood at the centre of women’s lives and transferred reproductive control from women to (male) medical professionals (e.g., Corea 1985; Klein 1989; Strickler 1992; Thompson 2002, 2005). These scholars saw the expansion of reproductive technologies as part of a continuous process whereby the patriarchal medical system was gaining control over women’s procreative bodies and reducing them to passive objects of medical surveillance and management (Sawicki 1991: 76–77). Furthermore, they were strongly critical of the pushing and forcing role that the medical system and doctors played in the medicalization of fertility problems (Van Balen and Inhorn 2002: 14).

Infertile women’s despair – and thus their eagerness to use reproductive technologies – was presented by scholars in this field as ‘a by-product of largely anti-woman pronatalist and patriarchal norms’ (Sandelowski and De Lacey 2002: 42); or alternately, infertile women were depicted as ‘not-truly-desperate at all, or as not having to be desperate, but rather made to appear, or encouraged to be, desperate by physicians, drugs companies, and other marketers of infertility services and products’ (ibid.).

Turn to Pragmatism: A More Nuanced Understanding

Medical anthropologists and other social science scholars have critiqued radical feminist scholars – and I share these critiques – because their insights were rarely based on empirical studies, and their analyses focused almost exclusively on the dominant discourses governing reproduction.³ Without denying the impact of such discourses, these later scholars argued that women (and men) should not be perceived as ‘passive vessels, simply acting in culturally determined ways’ (Lock and Kaufert 1998: 2), nor as people docilely following hegemonic biomedical discourses and practices (Lupton 1997), but instead as pragmatic users of (reproductive) medicine:

The response of women to medicalization is often mixed. They rarely react to the specific technology, or simply to the manipulation of their bodies, but rather on the basis of their perceptions as to how medical surveillance and interventions might enhance or worsen their daily lives. (Lock and Kaufert 1998: 16)

Lock and Kaufert identified pragmatism as a notion firmly guiding people’s behaviour in the medical realm, as people do not act solely based on a series of fixed and stable principles or standpoints, but rather they weigh the pros and cons given their needs and their situation at a certain moment. To understand people’s responses to (reproductive) medicine, a voice should be given to (infertile) women themselves, ‘as real and living individuals with varying responses to infertility’ (Sandelowski and De Lacey 2002: 42). This requires ethnographic investigation, studying how people perceive and use reproductive technologies in their daily life contexts.⁴

From the 1990s⁵ onwards, a large number of nuanced ethnographic studies – in both Western and non-Western countries – have been completed, providing insight into the meaning and experiences of fertility problems and childlessness for the women (and sometimes men) involved in various social, cultural, religious and economic contexts, and the ways in which they have acted upon their infertility, seeking medical and non-medical solutions. Other studies have focused on the ways in which people in these different contexts experience (biomedical) fertility treatments and ARTs (when offered) and/or have examined how people’s use of ARTs affects their views on and further use of these technologies.⁶ In the Netherlands, a number of empirical studies have also been conducted (none of them ethnographic) that provide valuable insights into people’s experiences of and responses to infertility and reproductive technologies.⁷

Below, I discuss some of the empirical and theoretical insights gained from these studies that are particularly relevant for the current book, and which contribute to the understanding of the medicalization of fertility problems and of people’s (persistent) use of ARTs or their resistance to them.⁸

Compelling Reproductive Technologies

Medical technologies play a powerful role in processes of medicalization.⁹ More and more lay people have come to see the body as a machine consisting of parts, which – when damaged or failing – can be repaired or replaced (Shilling 1993). This has created high expectations of the potential solutions biomedicine has to offer, and therefore it has been argued that the mere existence of medical technologies renders people eager to use them. The very availability of ART treatments thus makes most people want to fully exploit them, in order to avoid the potential regret of not having tried everything possible; a notion coined as anticipatory regret (Tijmstra 1987). Women find it hard to say no to further treatment, as they are surrounded by evidence that IVF and other techniques do result in babies (Sandelowski 1991).

Aside from the impact of its mere availability, reproductive technologies have other effects as well. Sandelowski (ibid.: 31) has looked at the ‘nature’ of reproductive technology and ‘how it operates’ to grasp why it is so compelling for many couples with fertility problems. In so doing, she argues against locating the compelling character of such technologies exclusively in pronatalist values and patriarchal agendas, as radical feminists have previously done. Rather, she starts from the position that in order to understand persistence in the use of reproductive technologies, these technologies should be looked at both from the inside and the outside. Viewed from the outside, cultural values may indeed push couples and doctors to use these technologies. Viewed from the inside, reproductive technologies also have their own pull. Sandelowski found, for instance, that one of the aspects that makes these technologies so compelling is their fragmenting character. By means of these technologies, ‘hidden’ aspects of conception become exposed to the eye and to the consciousness, which permits couples ‘to live each step of getting pregnant’ (Sandelowski 1993: 123). Achievement at one stage in the process compels couples to move on to the next.¹⁰ Increasing visualization of the body’s interior and bodily processes influences the way in which people perceive their own – ill, infertile or pregnant – bodies and how they act upon them (Van der Geest 1994; Layne 2003).

Sandelowski and other scholars have further identified a number of other features of ARTs that make them so compelling and hard to resist. They have pointed to the repetitive character of these technologies: hormonal stimulation, artificial insemination and IVF are not simply expected to be immediately successful; they must be repeated in order to achieve success. This repetitive feature in a way parallels the natural process of getting pregnant, since in general people do not conceive after the first try.¹¹ Women thus come to see these technologies as natural, which makes it easier to carry on with treatments and facilitates the acceptance – and obscuring – of their relative ineffectiveness.¹² In addition, as infertility treatments often serve diagnostic purposes, each treatment gives additional insight into what is going wrong in the conception process, and thus offers new chances to resolve or circumvent this particular problem in subsequent treatment (Franklin 1997). Finally, the fact that many (hormonal) treatment variations exist and reproductive technologies are constantly in development and being made known to the public – and may thus potentially offer new chances again and again – make it more difficult to stop treatments completely (Verdurmen 1997; Thompson 2005).

In sum, the mere existence and particular features of ARTs turn them into technologies with a strong ‘pull’ effect, which explains – to a certain extent – their persistent use by infertile couples/individuals. However, this persistence also draws people onto an ‘emotional roller coaster’, where they oscillate between hope and despair.¹³ This book firmly builds on the above insights, and addresses the question of how, in a context of the increasing availability and use of visualizing technologies and ample provision of information by health professionals, such factors construct people’s ideas and experiences of ARTs.

The Impact of Entering the Biomedical Domain

Social science scholars have examined how entering the biomedical domain of fertility clinics – with its disciplinary and normalizing practices – affects the way in which people come to see themselves, the treatments they undergo and their use of reproductive technologies (Sawicki 1991; Cussins 1998; Pasveer and Heesterbeek 2001; Thompson 2005). It is because of these practices, these scholars argue, that women (they rarely speak of men) undergoing fertility treatments are more and more inclined to look at themselves and their bodies with a ‘medical gaze’, to see themselves as ‘patients’, a shift that also enables them to behave as patients (Lupton 1997). Disciplinary power, Sawicki (1991) further argues, does not force these medicalized views upon people in treatment (as orthodox medicalization critiques would have it), but rather these medicalized views simply result from the disciplining that takes place and is embedded in clinical encounters. In addition, these clinical encounters and the reproductive technologies offered are strongly appealing to women as they incite desires, address their real needs and come up with concrete solutions, and therefore women willingly subject themselves to them (ibid.: 85). Women’s and men’s ideas, wishes and choices are thus seen as being co-produced through their contacts with biomedicine and the clinic. The hegemony of biomedicine is ‘achieved through consent rather than by force’ (Gramsci 1971).

Two studies, conducted in the USA and the Netherlands, examined in detail what happens when women (and men) enter fertility clinics and actively engage in ‘disciplinary work’; what the researchers refer to as the ‘objectification of the body’ (Cussins 1996, 1998; Pasveer and Heesterbeek 2001; Thompson 2005).¹⁴ These authors argue that when visiting a fertility clinic, women have to objectify their body, as it is only through this disciplinary work that they can achieve their goal: becoming pregnant and thus becoming a parent. They show how this disciplinary work accustoms women to the clinic’s bureaucratic routines and encourages them to follow medical instructions, embrace medical knowledge and undergo painful medical examinations and treatments (Pasveer and Heesterbeek 2001). Furthermore, being good in ‘bureaucratic work’ may facilitate their flow through the clinic and being well-informed may enhance their active participation in their own care. This disciplinary work may be looked upon as potentially threatening to women’s individuality, as they have to conform to the clinic’s rules. It may also be seen as rendering them as ‘obedient patients’ – as the provided information allows them to better understand and follow up on what doctors propose, rather than criticise or debunk the doctors’ expertise – or as ‘medical objects’ – as their bodies have to be disciplined to become examinable and treatable.

Nevertheless, the authors argue that these women (and men) are not passively undergoing this objectification. They are constantly required to play an active role in objectifying their bodies, and therefore should not be seen as (mere) victims of biomedicine, but rather as autonomous persons who are able to exert agency. Thompson (2005) explicitly speaks about ‘agency through objectification’, instead of placing the two in opposition to one another (as radical feminists would do). As she puts it, ‘The patients do not so much let themselves be treated like objects to comply with the physician as they comply with the physician to be treated like objects’ (ibid.: 191).

The authors further state, however, that there is a risk attached to this: if women (and men) are not good (enough) at playing an active role (which happens to some, for example when confronted with repeat failures), they risk being taken over by the technology and treatment and losing their agency.¹⁵ In addition, Pasveer and Heesterbeek (2001) argue that because of the treatments they have gone through, and because of the various forms of objectification that they have been involved in, infertile women change over the course of the treatment trajectory. They are no longer the same – stable and rational – people they were when they first visited their general practitioner with their fertility problem; they often become more ambivalent, simultaneously wanting to continue and yet discontinue treatments. Treatment trajectories, Pasveer and Heesterbeek assert, do not take into account these changing personalities or people’s ambivalence; they are designed for the continuation of treatment, without pauses or stops. Consequently, infertility patients only stop if they are desperate or on the explicit advice of the medical doctors. From this perspective, continuing or not continuing treatment is not (only) about conscious agency and informed decision-making by autonomous individuals, since women whose...