Body work in assisted conception: exploring public and private settings
Address for correspondence: Anne Kerr, School of Sociology and Social Policy, University of Leeds, Leeds, LS2 9JT
Body work has been foregrounded in recent sociological writings on health and social care, particularly the emotional labour of patient care. In this article I explore the social and emotional dimensions of body work in assisted conception in private and public National Health Service (NHS) clinics. Drawing on an ethnographic study, I explore how tensions around bodily attributes, treatment costs, clinic performance and the extent of consumer sovereignty were managed in decisions about who to treat and in what manner. In NHS settings, body work involved efforts to standardise and constrain bodies in line with an ethics of justice that included the co-construction of protocols and performance measurement and a strong emphasis upon teamwork and influencing the behaviour of the sector as a whole. In contrast, body work in private settings was more overtly organised around an ethos of individual consumption that emphasised bespoke treatment together with an active critique of the regulator, based on a strong entrepreneurial ethos. Emotional labour in private settings was also more overt. I conclude by exploring the implications of my analysis for the study of assisted conception, the sociology of body work and the further marketisation and deregulation of medicine.
Assisted conception is a fascinating example of contemporary biomedicine (Clarke et al. 2003). Since its development in the 1980s it has become a thriving multinational industry. Demand for the service continues to grow, with experts estimating that up to one in six couples will experience fertility problems (Human Fertilisation and Embryology Authority [HFEA] 2010). Unlike traditional medicine, which is focused upon the diagnosis and eradication of disease, the primary goal of assisted conception is to establish a successful pregnancy in conditions of considerable uncertainty about the biosocial reasons for infertility and the potential for success (Hull et al. 1985). The field is controversial, involving heterogeneous actors in numerous disputes over the status of infertility as a disease, public funding, eligibility, research on embryos and novel treatments. Regulation is also highly variable across national contexts and increasingly contested in nations where it is at its most advanced (such as the UK).
Sociological writing on assisted conception has tended to focus on women’s experiences of infertility, gamete and embryo donation (for example, Griel et al. 2010, Letherby 1999, Lessor 1993, Shaw 2008). Anthropologists are more concerned with questions of gender, kinship and moral economies across a range of national contexts (see Inhorn and Birenbaum-Carmeli 2008 for a recent review). Franklin (1997) and later Thompson (2005) have documented the production of parents through, in Thompson’s terms, the ‘ontological choreography’ of techno-science, bodies, rules and finance. Much of the most recent social scientific writing on assisted conception has focused on more controversial developments, such as donor-assisted reproduction, cross-border reproductive care or pre-implantation genetic diagnosis (for example, Blyth 2005, Ehrich et al. 2008, Franklin and Roberts 2006, Haimes 1998, Knoppers et al. 2006). This work is linked to a wider literature on complex bio-economies of policies, bodily parts, labour and capital in contemporary medical science and the politics of race and identity therein (Cooper 2008, Walby and Mitchell 2006).
The effects of the organisation of mainstream assisted conception services on how care is provided, and to whom, have received less attention from social scientists. Yet, as Thompson (2005) and Inhorn and Birenbaum-Carmeli (2008) have noted, access to assisted conception is a major issue requiring further ethnographic analysis. How are entitlements, cost and choice enacted in clinics? How does this vary according to particular regulatory, institutional and market regimes? And what does this tell us about the nature of assisted conception and contemporary biomedicine more generally?
In this article I explore body work (Twigg et al. 2011) in assisted conception in an effort to shed light on these questions. Drawing on an ethnographic study of assisted conception clinics in the UK, and a series of qualitative interviews with a range of staff working in the clinics, I explore the social mechanisms of practitioners’ work, focusing on how they selected clients, planned and delivered their treatment and managed the client base, priorities and performance of the clinic and, in some cases, the sector as a whole. I consider how practitioners’ work in these regards was constrained and patterned according to their setting and the various negotiations, routines and protocols that this involved (Timmerman and Berg 1997), highlighting differences in body work in public National Health Service (NHS) and private clinics. The complexities and tensions evident therein make this an ideal case to extend the analysis of body work to include consideration of the different ways in which body work is costed and emotional labour is delivered in the increasingly marketised context of healthcare.
Recent writings on body work have documented the work involved in a wide range of practices, routines and interventions variously attempting to constrain, enhance or simply manage bodily processes, products and images (Gimlin 2007, Twigg 2002, Wolkowitz 2006). Bringing the body back into the study of work and practice has generated considerable insights into the affective and emotional aspects of labour and how this features in the power relations between clients and providers (Twigg et al. 2011, see also James 1989 for a fuller discussion of emotional labour). In a recent special issue of the Sociology of Health & Illness, Twigg et al. (2011: 171) define body work as ‘paid work on the bodies of others’ to focus attention on organisational micro-politics in healthcare. Building on a range of empirical studies, particularly Cohen’s analysis of the constraining effects on marketisation (Cohen 2011), Twigg et al. go on to advocate more comparative analysis of body work to ‘trace the tangible effects of changes in organisational services, funding and external constraints on how work is structured, measured, monitored and experienced’ (2011: 182).
This suggests that exploring assisted conception as a form of body work in public and private settings could be helpful in understanding its organisational dimensions, especially the ways in which practitioners manage eligibility, access and care and how this differs according to their location. Focusing attention on the extent to which clients are being treated as sovereign customers (Korczynski and Ott 2004) in different settings, and how any tensions around this status are managed by emotional labour (for example, through displays of empathy) could be particularly useful in this regard. Thinking of assisted conception as a form of body work also invites us to examine its usefulness as a conceptual device for understanding contemporary healthcare. Scholars have tended to emphasise the hands-on and intimate aspects of body work, distinguishing it from other kinds of work that takes place remote from the body and from work that does not involve significant affect or emotion. Back office, bureaucratic work on issues of eligibility or access might be one such example. But firm distinctions between impersonal back office and affective customer facing services are not necessarily so clear in today’s era of enterprise where workers in a public and private variety of settings must negotiate tensions between rationalisation and customer choice (Korczynski and Ott 2004, see also Lipsky 1980, Kerr 2008, 2009). Working with rules as well as work to design and negotiate these rules does not necessarily preclude emotional labour, particularly when it involves reference to actual or imagined patients with complex problems. A recognition of the existence of multiple bodies in care work, including virtual bodies rendered visible by technical devices (Måseide 2011), demonstrates that body work need not involve actual physical bodies. This suggests that consideration of where bodies and affect figure in the work of deciding on and managing access to assisted conception could sharpen our understanding of body work and how the concept might be extended to accommodate a wider range of bodies and work beyond hands-on, emotional labour.
In order to explore these issues further I present data from an Economic and Social Research Council (ESRC) funded research project that explored the social and discursive construction of ethics in research laboratories and clinics working with human embryos. The bulk of the research took place in three key field sites – a university embryo research laboratory and two assisted conception clinics – between 2004 and 2007.1 One of the clinics was in an NHS setting and the other was in a private setting. With appropriate Central Office for Research Ethics Committees ethical approval, I took part in a series of individual and group conversations with the core group of staff at each site, observed research and in-house meetings, attended professional and public meetings and conferences and reviewed previous publications, grant applications, minutes of relevant meetings and other local archives, such as press clippings. Using purposive sampling, I also conducted a series of 52 semi-structured interviews, including six with staff at the university, 43 with staff in assisted conception clinics and three with representatives from the HFEA. In all, 30 interviewees worked in NHS settings, of whom 10 were clinicians, 13 were embryologists, three were nurses, three were counsellors and one was an administrator. Of these staff, 16 worked in settings in which only NHS funded patients were seen and 13 saw both NHS and fee-paying patients. A total of 13 of the interviewees worked in private settings: six of whom were clinicians, four were embryologists, two were administrators and one was a nurse. Ten of these interviewees worked in settings that saw only fee-paying patients, and three saw both NHS and fee-paying patients. The interviews were tape-recorded, transcribed and coded according to themes that were identified after repeated close readings of the transcripts, following the conventions of social constructionist qualitative analysis (Clarke 2003, Holstein and Gubrium 2003). In this article I draw on data from the ethnography of the clinics and interviews with staff working in assisted conception clinics. I have merged these data into one hermeneutic unit to allow for ease of analysis, and do not distinguish between data gathered at the core and other field sites to preserve anonymity. Before moving on to draw out some of the differences in body work across NHS and private setting I sketch the broad range of body work I encountered in the clinics.
Body work in assisted conception
Work in assisted conception is primarily focused upon trying to achieve a pregnancy, working with the bodies of the prospective parents, and, where relevant, gamete donors or surrogates, or both. Hands-on work involves an intimate investigation of the reproductive organs and the constitution of clients’ bodies (physical, emotional and lifestyle), as well as tests, the administration of drugs, scans, the recovery of gametes, embryo creation and replacement. This involves a team of practitioners – nurses and doctors have the most direct engagement with clients’ bodies, but embryologists and ultrasound operators also touch the body and its products, and counsellors are also involved in intimate emotional work with some clients. Together practitioners must determine clients’ eligibility for treatment and design and implement the treatment plan according to the clinic protocols, so their work also involves engagement with funding, practice guidelines and standard operating procedures as well as close monitoring and analysis of treatment as it progresses. Most treatments are unsuccessful so the patient’s history as a client must be managed over the course of a number of treatments, taking account of their biological, social and financial circumstances.
As Thompson (2005) has noted, assisted conception requires the choreography of clients’ bodies and their emissions with the techno-scientific capabilities and facilities of the clinic, as well as the constraints of regulation and funding. In the UK this takes place within the context of a comprehensive and complex regulatory framework, set down in the Human Fertilisation and Embryology Act (2008) and the HFEA Code of Practice – an extensive living document comprising mandatory requirements, HFEA guidance and professional guidelines on staffing, counselling, information and consent, multiple births, the welfare of the child, embryo testing, donation and surrogacy, research and training, facilities and administration and the use of gametes and embryos. These requirements must be interpreted and implemented in practice, but they are also reviewed, challenged and reshaped by practitioners through their engagement with the regulator.
Work in assisted conception also involves close engagement with the funding environment. In the UK most patients pay for their treatment, which means that practitioners must engage in marketing and customer relations as part of their service delivery. Clinics treating NHS patients also need to interpret eligibility criteria in relation to particular patients as part of the consultations and manage their clients’ transitions between fee-paying and NHS status or between the different clinics involved in their care.1 Practitioners in NHS settings must also contribute to the development of primary care trust (PCT) rules concerning eligibility and entitlements. Typically, a limited number of cycles of treatment are available to couples who have a diagnosed fertility problem that has existed for two years, and where the woman is under 40 and has a ‘normal’ body mass index (BMI), although rules vary across the country. Working in these clinics can also involve interacting with prospective patients in groups. Staff must manage sometimes lengthy waiting lists for NHS treatment, as well as providing support groups as part of their service. These groups might be a general service for all couples but sometimes they are designed for specific groups such as women seeking to lose weight before they can commence treatment. Beyond the clinic practitioners also encounter representatives of service users via other routes, when engaging with the production and interpretation of legislation, guidelines and eligibility criteria for their practice. As Mulkay (1997) and others (for example, Kelly 2003, Parry 2003) have extensively documented, professionals’ rhetorical work is achieved in various domains, involve lobbying around legislative change via professional societies and groups, in concert with patients' groups. Practitioners are also represented, sometimes alongside previous patients, on the regulatory bodies and committees making decisions about practice, locally and nationally. These types of activity involve engagement with actual and ideal types of patients, as well as the patient population in the clinic and the country as a whole.
I now turn to explore how this work was performed in NHS and private settings, focusing on how decisions were made about treatment in general and in particular, and on how staff achieved this through different kinds of body work, including work directly and remotely with actual and virtual bodies, and the deployment of empathy.
In NHS settings assisted conception took place within a context of limited resources and entitlements balanced with a strong ethos of ‘giving everyone a chance’ whether they were NHS or fee-paying clients. Clinic directors and senior staff spoke about their decisions to set the clinics up in the NHS in order to meet the needs of ordinary people who could not afford expensive treatment. They spoke of how this ethos was maintained through recruitment of like-minded staff and a strong team spirit. Clinic staff also articulated a common narrative of the ethos in NHS clinics in interviews and observation. For example, practitioners in NHS settings who also provided treatment to private patients argued that, in contrast to market leading private providers who, they implied, ‘cherry picked’ good patients, they treated all their patients the same way – starting with a mild approach and striving for improvement. This involved efforts to align body work with private patient and commissioner requirements, as illustrated in the following quote from a senior embryologist:
Well what we’ve actually tried to do is to make sure that everybody who comes through has exactly the same experience. The difference of course is that one group pays and one group doesn’t but we’ve developed a structure whereby what we charge for things is all inclusive, which is the same way we deal with the commissioners … We obviously have to put something back into the Trust but our idea is to make it as simple as possible for all the patients.
Clinicians also spoke of foregoing high levels of personal profit in the interests of providing a necessary and cost efficient service. They contrasted their safety conscious approach in line with the HFEA Code of Practice with the more aggressive approach of some private clinics, which they associated with higher rates of ovarian hyper-stimulation syndrome and risks to the mother’s health.
Practitioners in NHS clinics also stressed their commitment to working with ‘more difficult’ groups of patients who had waited longer and who they considered to be more likely to have problems with weight, addictions or family circumstances than fee-paying patients. Staff also represented these patients as coming from a lower social class than fee-paying patients, which meant that they might have more difficulties in understanding and complying with their treatment. However, their commitment to making the most out of limited public resources required them to balance the need to offer treatment where there was a realistic chance of success with the need to help those considered to be most in need of treatment on the NHS. This involved clinicians and senior embryologists in the creation of a range of protocols (with PCTs) to introduced limits on treatment, for example to women below a certain age or BMI (for example, a BMI of 30). On a more micro-level detailed treatment protocols were also in a continual process of review and refinement by clinicians and embryology staff in an effort to target treatment effectively.
Balancing public and professional duties to the state and their patients also involved nurses determining available budgets and PCT criteria for each patient as part of their work, running the gauntlet of clients’ disappointments and frustrations in the process, as one senior nurse said:
It’s really, really hard and particularly hard for the nurses because they’re the people that have to speak to the patients and tell them that they can’t come through and there’s no more funding left or … whether it be an age thing or treatments finished or the embryos that have come over have finished and that kind of thing. That is really, really difficult and you really feel for people … you just try and empathise with them I think and you try and understand how difficult it must be.
Displays of empathy for disappointed patients – a classic feature of contemporary service cultures – accorded with other efforts on the part of nurses and clinicians to work around restrictions on treatment. For example, clients could be seen on the NHS then transferred to private patient status to get their treatment if they were ineligible or at the upper end of the age limits for treatment on the NHS (for example, 39 years of age). Clients could also change status during treatment. For example, in one clinic clinicians would sometimes cancel NHS-funded cycles prior to egg retrieval or insemination and charge a ‘cancellation fee’ as if to a private patient when it was judged that treatment would not be successful so that it did not count as one of the couple’s NHS-funded ‘goes’. Again it was stressed that this took place without regard to its detrimental effect on overall success rates and market position. This also involved managing transitions at a distance, for example embryologists’ co-ordination of the movement of gametes and embryos between settings to enable a mixed funding model of treatment, although this could create tensions as staff tried to avoid being used as a ‘cheap storage centre’ for private patients because of the pressure this might place on already limited resources. Clinics that provided treatment to fee-paying patients also offered greater latitude to individual patients. This is illustrated in the following excerpt where a clinician is discussing treatment protocols based on levels of follicle stimulating hormone (FSH). In fertility treatment FSH is given in injections to patients to stimulate ovulation. It also rises naturally as women age and the supply of eggs diminishes. FSH is therefore measured in day 3 of the cycle to give an indication of the amount of eggs and the likely success of treatment. Above a certain level, chances of success diminish, as this consultant explained:
We had a policy that we felt if it’s over 10 we warn people that it might be poor … Previously one of the health authorities had a FSH limit of 15 … on the basis that the NHS really have to be targeting people with a realistic chance of success so 15 was their cut off for that. Coming private we put it up to 20 on the basis that if someone is told ‘you’ve got a half per cent chance they say ‘I just want to try it’. We’ll say, ‘fine, okay we’ll try it but there’s a 50 per cent chance you won’t get enough FSH’… but they have a go. I don’t have a problem with that but it’ll make our figures not look very good.
In other respects there was less flexibility and customer responsiveness in practitioners’ work, in accordance with an NHS culture marked by numerous organisational and structural constraints. Staff spoke of working in a context where ‘the Trust is always overspent’, which meant that equipment and additional provisions such as ultrasound scanning for embryo transfers were hard won. Waiting rooms were busy and crowded and clinics ran at fixed times, which could be disruptive for working patients. Although the staff recognised that this did not fit in with clients’ lives they also reasoned that the NHS was not designed to meet these kinds of individual consumer needs. Demanding (fee-paying) patients who asked for private rooms or special access to consultants were given short shrift.
Practitioners also had to engage in a range of other work more remotely from the bodies of their clients, but nevertheless key to determining access and quality of care. Senior clinicians did body work at a distance, working with PCTs to codify entitlements in a range of eligibility and treatment protocols. This work could involve considerable emotional labour on the part of practitioners. Some spoke passionately about their effort to get all of their commissioners working together to end the unfair ‘postcode lottery’ of care for their patients. This involves some strict limits on care for patients with lower chances of success, decisions about which could be emotionally charged. For example, one clinician in this study was at the forefront of efforts to encourage PCTs to take a particularly hard line on treatment of smokers, speaking of her feelings of frustration and loss after her past experience of achieving a successful pregnancy with a heavy smoker only to see the baby stillborn.
Staff from this clinic even ran annual ‘waiting list’ meetings together with representatives from some of the PCTs to talk to prospective patients about what their treatment might involve and answer some difficult questions about funding. At one such event a representative from the PCT spoke in surprisingly intimate detail about his own experience of male factor infertility and assisted conception in response to complaints from the audience about the ‘postcode lottery’ of care, explaining that he felt for couples who were only getting one cycle on the NHS but that it was getting very difficult for PCTs to manage so many competing claims on their resources and they had to prioritise reductions in waiting times. The staff also got involved with their professional societies and formed alliances with other pressure groups in campaigns against restrictions on treatment, positioning infertility as a disease and defending state provision of treatment. Their location in and affinity to the NHS also meant that they were more involved in other campaigns and proposals to use public funds more efficiently, for example, to reduce multiple births arising from assisted conception. Some staff explained how their past experience of creating multiple pregnancies that ended prematurely or resulted in children with disabilities shaped their commitment to this kind of campaigning work.
Negotiating access and eligibility for treatment also involved embryologists in close engagement with the success rates of their own and other clinics. Clinics feared poor performance because this could deter commissioners and clients and put the future of their service in jeopardy. In addition to the local work of collecting and analysing their own performance and adapting protocols and treatment regimes accordingly, NHS clinic staff also engaged in giving the regulator feedback on the loopholes in the system that some private clinics might exploit to improve their recorded success rates. In a discussion about league tables, one senior embryologist with regulatory experience commented:
There were clinics who were drawn out and it was said that these are the best ten clinics in the UK and others are the poorest. And I’ve done an analysis and shown that some of the clinics in the top ten are actually, if you take some of the other age groups, are much further down the success rate. So it’s very unfortunate that one figure is taken by the press and also used by the clinics for marketing purposes when the whole picture is slightly different.
Deconstructing market positioning was part of a wider set of commitments to maintaining NHS provision in the face of strong private sector competition, and the regulator was seen as an important ally in this campaign. This involved careful coordination of the relationship with the regulator, which was cast as a ‘necessary evil’ to effectively manage public concern and ethical controversy, but was also a mechanism for trying to assert equity in the sector, reflecting another key tension apparent in the work of assisted conception – management of the dual logics of customer sovereignty and citizen entitlements.
The main goal of private clinics was the same as that of their NHS counterparts – to achieve successful pregnancies. However, the organisation of the work to achieve this was quite different in terms of its ethos, priorities, flexibility and constraints as well as the distribution and kinds of emotional labour and relationships with regulators that it involved.
The ethos of private clinics stressed customer choice. Clinic directors spoke of setting up their clinics to meet the needs of patients not served by the NHS or by conventional practitioners. Although the staff accepted that the NHS should fund only the most deserving cases, they also argued that treatment should be more widely available to those willing to pay. The clinic directors were also able to tailor their patient clientele according to their values and priorities. In some cases there was a clear commitment to providing treatment to marginalised groups, such as same sex couples, whereas in one clinic there was a clear policy not to provide treatment to these patients on the basis of the religious beliefs of the director. In other cases there was a commitment to developing new kinds of patients, such as in the so-called ‘saviour sibling’ cases where embryos were tissue matched with living siblings so that the resultant child could be a bone marrow donor. In each case the director stressed their pioneering role in the field.
The ethos of entitlement meant that private clinics were more accommodating to clients’ needs than clinics in NHS settings, for example, permitting appointments that fitted around their working lives. This meant longer hours and higher workloads for the staff in private clinics, including early morning and weekend working to offer appointments when it suited patients and their bodies. The fee-paying status of clients also meant that they were considered to be entitled to consultations with senior clinicians (though these clinic times were fixed to fit around the consultants’ other NHS commitments). Private clinics also tended to be quieter and more plush than their NHS equivalents. Waiting areas were well stocked with refreshments and magazines. Administrative and nursing staff were on hand and attentive. This service-oriented culture seemed to correspond to a greater capacity for emotional labour among the staff in all of the specialities (not just nurses). For example, an embryologist in one of the private clinics described it thus:
Well people do have to wait anyway, anywhere you go. I mean if we’re running behind that’s got to be expected … with appointments and that kind of thing. But making things slightly more comfortable for them waiting: I often offer people a drink and magazines and stuff whereas I don’t think they probably do that maybe on the NHS. I’m not so sure. And getting back to them the same day with things. If they’re having a freeze they want to know if it’s been successful or not. So we ring them back straight away and doing all that sort of thing. I do think they would expect more but that’s understandable.
Other private clinic staff also saw it as part of their role to empathise with and try to accommodate clients even when they were being difficult, as in the excerpt below from an interview with an administrator:
A lot of the time it’s patients that want an appointment now and if we have to tell them it’s a 2 to 3 week waiting time they can’t understand it because they’re private patients. A lot of patients can’t understand why they need a letter of referral from the GP. A lot of them just want to ring up, make and appointment and come in … Upset patients that perhaps the treatment hasn’t worked and they want an appointment with the doctor and we can’t give it to them straightaway. The girls in the back will bend over backwards to try and accommodate but sometimes you can’t.
The clients of private clinics were also perceived as being different from NHS patients in terms of their physical characteristics as well as their social status and entitlements. As one clinician said, private patients were ‘older but thinner’ than their NHS counterparts. Staff spoke of how some private patients would respond well to treatment but would not be eligible for NHS treatment (for example, younger single women or same sex couples) but others were more difficult to treat, perhaps because they were older or because they had a history of failed treatments elsewhere. In these cases clinicians sought to cultivate bodies that they could do work upon through a fine-grained focus upon their individual circumstances. As once clinician put it, ‘So, you need to just take their hand and just make them focus and concentrate on one, two, three, what is relevant to you’.
These clinicians spoke passionately about tailoring treatment to particular clinical encounters, invoking empathy for their clients as a reason to treat them as individuals. As the clinician quoted above went on to explain:
I think if you have a good system and you try and get the best out of the system you can reproduce [your] results anywhere else. We work seven days a week. We look at patients as individuals. We don’t have a standard protocol that everybody is expected to fit into it. And that’s what I would have expected if I was a patient myself. If you do this anywhere else you will probably have very similar results.
Other senior clinicians in the private sector spoke of being ‘threatened’ by protocols because of their sense that they could interfere with their clinical decision-making. This corresponded with a less democratic approach to decision-making. One counsellor who had worked in both NHS and private settings noted that in the former the lead clinician could be challenged during regular team meetings, whereas in private settings the culture was more hierarchical and there was less of a sense of teamwork across the different professional groups, especially when the clinicians only did a few sessions per week in the clinic. This counsellor also spoke, with some incredulity, about how these ‘satellite’ clinicians went ‘against their own protocols’, for example treating a woman who was aged 52 when protocol was to treat up to the age of 42.
This accommodating culture did, however, create tensions for staff in private clinics, some of whom spoke of feeling pressure to meet the needs of demanding patients. Less senior staff found it particularly hard to say no, as they felt it was not up to them to decide how clients spent their money. In a discussion following my observation of a failed egg retrieval procedure (after multiple previous attempts) where the patient, on awakening, asked ‘When can I do it again?’ one embryologist commented:
I suppose if a patient is paying for the treatments out of their money in some ways it’s harder for you to say to them … for example you should only have one embryo put back or on this occasion … If they’ve already paid then that makes a difference … it shouldn’t but it does, as to whether you do … IVF or ICSI, if you’re worried that they’re not going to get a good fertilisation with IVF … you’d see them more as consumers I suppose than as patients … if they can pay for something, then they expect it to be done so they want their embryos frozen and they’re paying for it then you’re under pressure to do that even though it’s not the best thing really in the long term … if those embryos haven’t got a good chance of survival or whatever. So it’s not so much coming from the unit saying ‘you must do this you must do that’ because we need to make money. It’s more coming from the patients saying, ‘well we’ll pay, you know, what’s the problem sort of thing? We’ll pay extra’.
In some cases practitioners’ ability to decline to offer a client treatment was also undermined by the practices of their senior colleagues who were known to be more willing to ‘give it another go’ than the nursing or less senior clinical staff. On the occasions when consultants were prepared to say no, they described using a kind of ‘strategic prevarication’ to handle the situation, as illustrated in the following quote:
So we’ve been ticking on now for about 12 months doing all sorts of various investigations and tests. He’s meant to go for detox and it failed. They probably just tend to drift … I wouldn’t even refer them [to an NHS programme] because I think it would be inappropriate to do that because I don’t think they’d get accepted … So do I feel it inappropriate then to have any specific treatment? Well yes I do but I also do not feel it that I should say, ‘no, clear off, I’m not going to do any tests or investigations’… only simple treatment could be offered to them but they also have to play ball with me … go to the detox … come along to clinic visits … which is how I tend to play those sort of couples.
This approach maintained a minimum level of consumer sovereignty, which consultants reasoned would ultimately result in their clients deciding not to proceed with treatment. As another consultant commented, these kinds of patients tend to drift away. In other cases when clients’ requirements could not be met by the clinic, the clinicians would organise a referral elsewhere (for example, in some clinics egg-sharing with other clients could be organised; in others this was viewed as unethical). There was also a strong sense among the clinicians who were more open to controversial treatments that if they did not provide treatment someone else in the private sector probably would, if not in the UK then abroad. Some private clinics were therefore networked with other providers in various satellite arrangements to outsourced clinical work, including to other countries, for example, where egg donors were more readily available (see Allan et al. 2009).
Resistance to protocols and openness to treatment possibilities in private clinics also corresponded with a strong antagonism towards ‘the bureaucracy’ of the HFEA, particularly on the part of some directors oriented towards providing unusual and experimental treatments, some of whom went to considerable lengths to convince the regulator to give them permission to proceed (for example in saviour sibling cases). These clinicians expressed strong emotions of empathy and outrage at the regulator’s ‘cold’ treatment of needy families, feelings that they were happy to express in a range of public and media settings. This involved a discourse of marginalisation by the HFEA, as demonstrated in the illustration below:
What has troubled me over the years is [the] apparent lack of acknowledgement by the Authority that most of the work in this area in this country is done in the independent sector and it is only recently that members of the Authority have come from … the independent sector … . have actually had a voice on the Authority. It may be too little too late.
Other kinds of work in private clinics were oriented towards business and service standards and quality management rather than resource allocation, as in the NHS. Managing protocols, data collection and analysis appeared to be more professionalised than in NHS clinics, with administrators and quality managers taking on a large part of the work, focusing in particular upon International Organization for Standardization and Health Care Commission accreditation. There was less engagement with the HFEA as a means to improve services and less concern about what the sector as a whole was doing than in the NHS clinics. One senior administrator explained that the HFEA were simply not very relevant or useful to what they were trying to achieve because it does not enable an improvement in customer service for actual patients with particular complaints. However, staff in private clinics were more positive about performance statistics overseen by HFEA than their colleague in NHS clinics, with some senior clinicians arguing that the patients’ guide was a good thing because it increased competition and encouraged clinics to improve their performance. There was also a less overt emphasis upon defending market position or deconstructing league table statistics than in the NHS, partly because the business did not depend on large-scale commissioning like the NHS and partly because the clinics had a ready market, particularly when their success rates were high, as in some of the clinics I visited.
Discussion and conclusion
This study has shown that access and entitlement to assisted conception are achieved through a range of work, from the close encounter of practitioner and client, to the backstage clinical and laboratory work of negotiating protocols and treatment regimes as well as national decision-making about wider ethical and financial questions of deservingness, eligibility and choice. Practitioners engage in emotional labour when conducting this work in a range of settings beyond the clinical encounter. Assisted conception is choreographed to manage bodies in all their variations, but with different inflections in public and private settings. In NHS clinics, body work was shaped by the need to categorise clients in a patient group and to standardise and constrain bodily functions within agreed limits in line with an ethics of justice. Enacting protocols and performance measurement was a collective endeavour that took account of practice across the sector, not just in the clinic itself, involving a considerable amount of dialogue with the regulator in a joint effort to produce, interpret and reshape rules, guidelines, data collection and analysis. In contrast, body work in private settings was managed through an ethos of choice and entitlement. Consumer satisfaction and market position were highly valued and a critical distance from the regulator was maintained in the context of a strong entrepreneurial ethos. Work in these two types of settings also involved different configurations of practitioners and their networks. In the NHS a great deal of emphasis was placed on alignment in the sense of the service on offer to clients, but also with the approach of funders and the regulator, as well as networks and good relations with the sector as a whole. In contrast, some private clinics were more concerned to preserve their distinctiveness, which was strongly associated with good results and market advantage.
Applying the concept of body work to assisted conception has proved useful in understanding the ways in which access to and eligibility for treatment were achieved in the context of particular constraints that differ across public and private sector providers. The ethos of entitlement differed across these settings and can be traced through clinical encounters as well as more mundane activities such as engagement with clients in the waiting room and on the telephone, or in group meetings where these occurred. This ethos also pervades the ways in which clients were handled remotely, when their case was discussed or reviewed, as individuals or categories of patients. Different versions of consumer sovereignty were apparent in all of these activities. As we would expect, this was apparent in a stronger form in private settings where there was an obvious resistance to grouping patients into certain categories for particular kinds of treatment. Nor did private clinics seek to collectivise patients’ needs beyond the clinic as a means of changing public policy. However, even in these settings, the need to consider market position and overall success rates meant that consumer sovereignty was mediated by rationalising processes. Consumer sovereignty was also apparent in NHS settings, particularly for fee-paying patients, whose needs staff sought to accommodate within the constraints of their setting and their other commitments to maintain the NHS dominance of the sector as a whole.
This study has also shown the range of emotional labour required to manage these tensions in both settings. This was apparent in engagement with individual patients, and collectives of patients, such as the NHS patients on the waiting list. It was also apparent in other backstage settings, such as work with other professionals, regulators and funders. Practitioners in NHS settings had less time to manage clients through empathy on a one to one basis, tending instead to seek to manage these remotely in their interactions with decision-making bodies. In contrast, private clinic practitioners from a wider range of professional backgrounds had more time to spend on individuals, both in terms of tailoring their treatment and in terms of meeting their needs through emotional labour.
I would therefore argue that too narrow a definition of body work, focusing upon intimate hands-on labour in the clinical encounter, would miss these important aspects of practitioners’ bureaucratic and emotional labour in determining who gets care and how it is delivered. Firstly, with respect to bodies, practitioners work with imagined as well as actual physical bodies, be they ideal types or representations of previous cases, and with patient groups, be they support groups or representations of the patient population. These bodies are always connected to actual bodies, which lend practitioners the legitimacy to create and deploy them in various negotiations over their practice. However, they play an important role in managing eligibility and care and therefore deserve to be studied in their own right. For example, further studies of body work could explore how professionals envisage, measure and cost treatment for different kinds of material and discursive bodies in particular settings, including but not limited to the clinical encounter.
Secondly, with respect to affect and emotion, this study suggests that body work encompasses displays of empathy and shared frustrations in front of colleagues and other professionals as well as patients, individually and in groups. Typically this work is part of managing the tensions inherent in the ideal of consumer sovereignty when it confronts rationalisation, and it takes a different inflection in the private and the public sector and in different settings, be they designed to implement and devise or criticise rules and procedures for determining eligibility and access. Further exploration of these aspects of emotional labour in other care sectors, in the clinic and beyond, could help develop our understanding of the constraints on contemporary healthcare.
Assisted conception is one of the most highly regulated but also the most privatised areas of medicine in the UK. In common with healthcare more generally, it faces further marketisation and deregulation. These trends may be mutually reinforcing but the process of transition will be characterised by many tensions, particularly the clash between consumer sovereignty and the counter-forces of standardisation and rationalisation in the interests of evidence-based medicine, value for money and effective and efficient services. This study suggests that practitioners will need to expend considerable amounts of emotional labour in managing these tensions and transitions in their interactions with clients and with funders, regulators and the sector as a whole. In specialised, relatively low volume areas of medicine like assisted conception, marketisation will not necessarily result in further standardisation and increasing volumes of clients (as it might in other areas of health and social care), but it may lead to market differentiation and emphasis upon bespoke services. Public sector practitioners’ notions of and efforts to provide for the patient group in their setting are likely to be undermined as the status of the individual grows. Transitions to new modes of delivery also have implications for team-working in the clinic, which may come under pressure if old hierarchies are reasserted by clinics finding better ways to meet customer demands. The sociological analysis of body work, in its material and virtual, direct and indirect forms, has a vital role to play in mapping and analysing the effects of these transitions.
Note that although there have been a number of changes since this period, such as the removal of donor anonymity and changes to the welfare of the child provisions, this does not affect the basic premise of my argument or the topic of study, which concerns the ways in which work is performed, distributed and managed across the clinic.
I would like to express my thanks to the Economic and Social Research Council for funding the study on which this article is based, (Kerr, A and Leese, H. Doing embryo ethics: safety and efficacy in research and practice), my co-investigator, Henry Leese, all of the research participants, the journal editors and the anonymous referees.