Abstract
Navigating whether to prescribe hormone replacement therapy (HRT) requires that health practitioners approach a woman’s individual life circumstances, and early menopause (EM) as a particularly intricate experience and condition. Drawing on qualitative interviews with 16 practitioners in Australia, this article examines the modalities of care that emerge in the nexus of EM and HRT. Early menopause emerges in participants’ narratives as far from a ‘unitary’ medical condition, but rather one that reaches across other embodied changes for women which may be moderated by HRT. Thus, different modes of care and tensions surface, and we suggest that these constitute an oscillation between ‘caring for’ and ‘caring with’ in medical practice. This oscillation combines experimentation with and adjustment of HRT, while contending with responsibility, risk and choice, and shared, knowledgeable care. Our goal is not to neatly split ‘caring for’ from ‘caring with’. Rather, we discuss how ambiguities of care circulate through a complex diagnosis and its treatment options. We argue that care, in this context, manifests as potentiality and as a set of flexible practices that at times cannot be fully disentangled from issues of choice and control, and HRT itself.
Introduction
Hormones, and their ‘replacement’, matter. In contemporary biomedicine, hormones such as oestrogen and progesterone are understood as essential to physiological functioning while also requiring measurement, monitoring and manipulation over time (Roberts, 2007). Often positioned as a significant harbinger of a change in hormones, menopause is typically framed as a ‘midlife’ event experienced around the age of 50–51 years old. Early menopause (EM), however, refers to menopause before the age of 45, or ‘premature ovarian insufficiency’ before age 40. 1 EM can be experienced spontaneously, or following chemotherapy, radiotherapy and certain surgical procedures. Depending on individual women and causes of menopause and related symptoms, hormone replacement therapy (HRT) may be prescribed with oestrogen only or combined oestrogen and progestogen, and in transdermal or oral formulations. This article discusses how HRT figures in the practices of health practitioners, and how the therapy not only reveals the uniqueness of EM, but also, importantly, gives rise to different modes of care.
HRT has been the subject of sustained concerns in medicine and the media particularly in relation to cancer risk (Krieger et al., 2005). The debate endures to this day, both in clinical research (e.g. Tan & Dayu, 2022) and in the media (e.g. Boseley, 2019). Such controversies often influence women’s decisions about their treatment as they navigate conflicting discourses about HRT (Stephens & Breheny, 2008; Stephens et al., 2002) and can be particularly salient for women experiencing EM who may be prescribed HRT for longer durations (Vincent & Farrell, 2013). These issues, and the experience of EM, are further contingent upon socioeconomic and cultural background, as shown in the literature on ‘midlife’ menopause (Avis et al., 2001; Delanoë et al., 2012). Likewise, practitioner approaches to recommending HRT for menopausal women can be contingent on geographical and cultural location, and on medical education and training (Hemminki et al., 2004). Previous research has investigated how women experiencing menopause at the age of 50–51 make decisions about using HRT (Hoffmann et al., 2003; Murtagh & Hepworth, 2003; Stephens et al., 2002) and health practitioners’ attitudes towards HRT for this age group (Yeganeh et al., 2017). However, there is little sociological research on practitioners’ approaches to HRT when caring for women experiencing EM. Drawing on qualitative interviews with 16 practitioners, this article examines the modalities of care that emerge at the nexus of EM and HRT. We suggest that an oscillation between ‘caring for’ and ‘caring with’ arises in medical practice. This oscillation combines experimentation with and adjustment of HRT, while contending with responsibility, risk and choice, and shared knowledgeable care. Our goal is not to neatly split ‘caring for’ from ‘caring with’. We discuss how ambiguities of care circulate through a complex diagnosis and its treatment options. We argue that care, in this context, manifests as potentiality and as a set of flexible practices that at times cannot be fully disentangled from issues of choice and control, and from HRT itself. We close our article by calling for an approach to care for EM that incorporates a practice of response-ability that attends to the interrelatedness of care, risk, knowledge, choice and response.
Background
A sociology of early menopause, care and hormone replacement therapy
The implications of EM and its connection to HRT have rarely been examined in sociological research. For an overview of critical perspectives on menopause and HRT, we must first turn to the scholarship on menopause at the age of 50–51 years old. Feminist critiques of the biomedical model of the body have long argued that while menopause often involves changes to women’s embodiment such as hot flushes, night sweats and vaginal dryness, it cannot be reduced to narrow clinical ‘symptoms’ (Stults & Conrad, 2010). These debates have typically focused on ‘midlife’ menopause, instead of EM, and they are also connected to the medicalisation of menopause and ageing more broadly, and to the marketing of HRT and other purported anti-ageing antidotes (Hunter et al., 2020; Stults & Conrad, 2010). Researchers have called for an examination of the ‘politico-economic dimensions’ (Clarke et al., 2003, p. 162) of medical practice, particularly how pharmaceutical corporations may entice clinicians towards specific prescription drugs (Fugh-Berman, 2015).
In a discussion on perimenopause, a transitional phase known as the ‘lead up’ to menopause (see Australian Menopause Society, 2017), and postmenopause, Fugh-Berman (2015, p. 22) argues that some pharmaceutical industries influence the prescribing of HRT, thus medicalising a ‘normal life phase’. She further argues that ‘menopause was – and remains – controlled and corrupted by hormone manufacturers’ (Fugh-Berman, 2015, p. 22). Conversely, other social researchers have emphasised agency and the interrelatedness of biomedicine with embodied experiences in women’s accounts of menopause (Hyde et al., 2010); and how women variously challenge and uphold biomedicine and engage in practices that could be interpreted as (self-)medicalising and empowering (Kolip et al., 2008; Stephens et al., 2002; Trusson et al., 2016). The sociological research on women aged 50–51 and HRT stresses that factors influencing women’s decisions about HRT include familial medical history (of cancer, for example), age, sociocultural, economic and interpersonal contexts, and medical knowledge (Hyde et al., 2010; Stephens et al., 2002; Trusson et al., 2016). Further, in the case of EM, the perceived risks associated with (not) taking HRT relate less to breast cancer, than to cardiovascular problems and osteoporosis, demonstrating the specificities of EM (Burrell et al., 2010).
Biomedical guidelines recommend HRT for the care of postmenopausal women who experience hot flushes (Yeganeh et al., 2017). HRT is generally recommended for EM, unless it occurs as the result of treatment for oestrogen-receptor positive cancers or there are other contraindications to therapy (Hickey et al., 2012). HRT can help in preventing cardiovascular problems and preserving bone density, pointing to the long-term health considerations that EM often introduces at an ‘earlier’ age, which distinguish it from menopause at the age of 50–51 (Hickey et al., 2012). The therapy may also lessen some interpersonal dimensions of EM highlighted in the sociological literature. These dimensions include, for example, difficulties in social life such as feeling ‘out of synchrony’ with peers and impacts on gender identity and fertility (Parton et al., 2016, 2017), experiencing a sense of ‘estrangement from one’s body’ (Johnston-Ataata et al., 2020, p. 1518), and the troubling of norms and expectations of youth, fertility and femininity (Parton et al., 2017; Singer, 2012).
Despite the potential benefits of taking HRT for EM, research has demonstrated that the drug produces intricate ambiguities for women, alongside the particularities of EM. Likewise, HRT in the context of EM enacts complexities in practitioners’ practices of care (Yeganeh et al., 2017). As noted earlier, sociological investigations on menopause and HRT have paid little attention to the EM–HRT nexus, particularly the role of health practitioners in this dyad. This scholarship has left open the question of how HRT – a ubiquitous drug in ‘midlife’ menopause and EM – circulates in practitioners’ accounts of their caring practices. Practitioners’ perspectives on HRT for women experiencing EM are significant because medical ‘experts’ occupy a central role in how women engage with drugs and negotiate the embodiment of EM, and as shown in recent research, HRT continues to be the subject of controversy (Natari et al., 2021). As our participants detail below, these multiple forces, tensions and ambiguities can present distinct challenges for practitioners. Questions raised by EM and HRT in medical practice often pertain to how (best) to care for generally younger women who are negotiating a ‘new’ and sometimes unexpected embodiment, and how to navigate/negotiate HRT while holding on to notions of responsibility, choice and control. Focusing on practitioners, this article draws on the sociological and anthropological literatures on care, complexity and ‘tinkering’ in medicine, and extends those critiques into the less explored area of EM and HRT.
Theoretical framework
The embodiment of menopause, through the experience of hot flushes, night sweats, vaginal dryness and infertility, tends to be culturally associated with the ageing female body (Hyde et al., 2010; Parton et al., 2016), and younger women can experience difficulties negotiating this new embodiment (Boughton & Halliday, 2008; Johnston-Ataata et al., 2020). EM ushers complexity into the clinical encounter: it is both ‘one’ medical condition and ‘many’ embodied, personal and affective ‘signs’ or symptoms, alongside long-term health implications. With their inextricable connection to EM, hormones have long been critiqued by feminist scholarship as more-than-biological. Rather, they are social, cultural and political ‘objects’ whose meanings shift – they are ‘bio-social’ as Roberts (2007) argues. Our approach in this article is inspired by Annemarie Mol’s extensive work on care (Mol, 2008; Mol et al., 2010, 2011), and Mol’s collaboration with John Law (Mol & Law, 2002) on complexity. For Mol and Law (2002), understanding complexity, particularly in medicine, involves attending to multiplicity, dissonance and heterogeneity, while not losing sight of points of coherence. Negotiating the complexities of EM and HRT encompasses several ‘actors’ beyond the practitioner, the woman and HRT. They include alternative options to HRT, cancer risk, and the knowledge women independently garner on HRT and EM, which produce, punctuate and puncture the clinical encounter.
Such complexities raise questions of how best to ‘do’ care when women can be highly conversant with medical literature and/or media coverage concerning HRT. Fear, ambivalence and a wish to remain ‘medication-free’ often influence decisions on HRT (Stephens & Breheny, 2008), a sentiment also expressed by some women experiencing EM (Knobf, 2002, p. 15). In addition, studies on medical care have emphasised the complexities at work in the clinical encounter and doctor–patient power relations (Skirbekk et al., 2011). For Mol (2008, p. 14), care is an ‘ongoing process’ with permeable boundaries and encompassing people, technologies and therapies. The ‘logic of care’ affirms that power and agency flow between humans (doctor, patient, nurse, pharmacist) and objects (HRT, blood tests, bone scans). In contrast to the logic of care is the ‘logic of choice’. For Mol, individual choice, while central to health discourses in western medical systems, is problematic and in fact often at odds with ‘good’ care. Mol argues that choice has not always made individuals more active in decision-making and stymies the complex and ambiguous ways in which ‘good’ care is done. ‘Good’ care is irreducible to giving or making choices (Mol, 2008, p. 19; see also Broom et al., 2016). Care is an ongoing and relational process arising from negotiations between patients, families and practitioners in dialogue with tests, treatments and technologies.
We find this conceptualisation of care useful for thinking through the multiple strategies and ambiguities practitioners draw on to discuss HRT in caring for women experiencing EM. It should be noted that at the core of practices of care are the specificities of EM, which bring unique challenges to relationships between practitioners and women, and EM requires care itself to be tinkered with. In her anthropological research, Mol (2008) mobilises the concept of ‘tinkering’ in reference to continual processes of care that require rearrangement and different interventions as the patient ‘moves’ through the corridors of the hospital for their treatment. Tinkering requires flexibility in responses to events and circumstances; it ‘requires that the doctoring be shared. For treatments can only be adjusted properly if the experiences of patients are carefully attended to’ (Mol, 2008, p. 99). Thus, this approach emphasises how medical practice itself can emerge as shared and ambiguous as individual experiences are navigated.
The study
This article is based on a large interdisciplinary study involving social scientists and academic clinicians in endocrinology and gynaecology, which aimed to examine women’s experiences of EM (for more details on this aspect of the study, see Johnston-Ataata et al., 2020), as well as the perspectives of practitioners involved in caring for women diagnosed with EM. We draw on interviews with 16 multidisciplinary practitioners in two Australian states across public and private health care services between July 2017 and March 2018. As the larger study aimed to capture broad perspectives on caring practices, the purposive sample included relevant professions comprising of three general practitioners, three endocrinologists, two medical oncologists, two obstetrician-gynaecologists, two breast surgeons, two breast care nurses, a clinical psychologist and a psychiatrist. The practitioners were aged between 35 years old and late 60s, and they included three men and 13 women. Most were employed full-time and had between 7 and 35 years of experience caring for women diagnosed with EM. Practitioners were recruited via professional organisations’ websites, social media and flyers distributed to clinical societies and health care services. Ethics approval was granted by Human Research Ethics Committees at Monash University and RMIT University (2016–1429; 2017–20985).
The interviews focused on participants’ experiences of caring for women diagnosed with EM. The discussion included the journey to diagnosis, symptoms and long-term health effects, treatments including HRT, other hormonal therapies and non-hormonal therapies, monitoring, organisation of care and services, changes in care they had observed since beginning their practice, and reflections on their practice. Participants provided details on the care of women experiencing EM, including the issues faced in medical practice, and the opportunities generated. The first and third authors (JF and KJA) conducted the interviews, which lasted between 35 and 110 minutes, and usually took place at the participants’ workplaces. The interviews were transcribed professionally and returned to participants for review.
The NVivo 12 software facilitated data management and analysis. Data analysis took place concurrently with fieldwork. The first and third authors again reviewed the transcripts upon the completion of all interviews, to identify and document themes across transcripts. During this process, the authors endeavoured to preserve the depth of the participants’ experiences and perspectives, documenting uncommon cases and conflicting views and approaches (Ezzy, 2002). Comparisons were made between all transcripts to further refine and add nuance to the coding framework. This process helped ensure the rigour of the analysis and connect different events. While the authors engaged with and discussed the literature during the analysis, the final step involved identifying conceptual tools to examine the themes and patterns identified in the data (Ezzy, 2002). The first author developed an initial draft of the manuscript, followed by discussions with other authors. Subsequent drafts were produced collaboratively.
Although the interviews were not exclusively focused on HRT, the therapy featured in all interviews, whether as a possible and potentially beneficial treatment, or as problematic and unsuitable, for example for women diagnosed with oestrogen-receptor positive cancers, or because women who could take HRT rejected the treatment. This article focuses on HRT due to its prominent feature in practitioners’ interviews, it being an enduring subject of interest and controversy, and the gap in the sociological literature on practitioners, EM and HRT.
Findings
Tinkering with care
In biomedicine, hormones and HRT are conceptualised as regulators of temperature, fertility, mood and sexuality (Roberts, 2007), and they may influence bone density and heart health (Arnson et al., 2017; Royal Osteoporosis Society, 2022). The loss or lowering of hormones through spontaneous or medically induced EM often leads to a host of challenges for women. Hot flushes, night sweats, vaginal dryness and osteoporosis are understood as direct consequences of EM. However, there is some debate about whether other reported experiences such as changes in mood or cognition are direct consequences of reduced oestrogen (Hickey et al., 2012). These debates manifest as complex in medical practice and require tinkering of HRT and care to adjust treatment regimens.
Given the broad range of potential effects and the variation in women’s experiences (Johnston-Ataata et al., 2020), study participants acknowledged that their practice could involve a degree of hypothesising. For example, Dr F, a psychiatrist, observed that practitioners try ‘to match the symptomatology with the patient’, hence the need to adjust the dosage and form of HRT depending on individual experiences and preferences. A further layer of complexity emerges as EM can, general practitioner Dr T noted, result in ‘more severe’ embodied responses, such as hot flushes, when compared to women experiencing menopause at 50–51 years old. In participants’ accounts, hormones manifest as ambiguous – simultaneously natural and essential, and needing evaluation and intervention. The medical practice of working on and with hormones requires some experimentation to determine the best formulation of HRT for a given woman. During this process, participants noted that women may experience continued symptoms or side effects, necessitating further adjustment according to how individual bodies respond. Experimentation, however, may not always resolve side effects.
For researchers working across sociology and anthropology exploring practices and techniques in medicine, to ‘tinker’ can be approached as processes of experimenting, measuring and tailoring to individual patients in relations of care (Mol et al., 2010). Tinkering is necessary because to engage in medical practice involves navigating complex situations and knowledges, unpredictable bodies, and often-ambivalent emotions between patients, families and doctors. In the daily work of doctoring then, emotions, relations, measures, diagnoses and medications must be held together and dealt with together. Certainly, raising the possibility of HRT as treatment requires skill and tinkering to determine the ‘best’ course of action for (and with) women experiencing EM. An obstetrician-gynaecologist, Dr H, for example, explained that there is a need to ‘juggle’ once women begin taking HRT, depending on how their body responds:
[S]ometimes there’s a bit of a juggle as to which hormones you give . . . you might give more progesterone than oestrogen. You might sort of change the dose around a different way. That’s again a bit of a juggle thing. . . . often some of these people have issues with absorbing medication . . . sometimes we need to use transdermal . . . that works well for a while and then there’s problems with vaginal spotting, then there’s non-compliance because they’re getting spotting, and then we go in a circle again. There’s often a bit of to-ing and fro-ing, and dose organising, and stuff like that with prescribing the HRT so that they’re happy with the outcome.
This comment reveals the multiple imbricating elements doctors must contend with in prescribing HRT for women experiencing EM. First, doses and the components that ‘make up’ HRT require adjustment for individual bodies, and HRT is typically formulated for women experiencing menopause at the age of 50–51 (Hickey et al., 2012). Second, Dr H’s reference to ‘absorbing medication’ makes clear that the work of the body in absorbing and processing HRT is not predictable or consistent. In this situation, care involves attending to disruptions in how bodies work and to the expectations that women have about treatment.
For some women who are prescribed combined HRT, needing to balance one hormone (oestrogen) against the other (progestogen) and attend to both in the body reveals the complexities of comparison, measurement and caring. The diversity of possible individual responses needs accounting for, and this can also be related to the form of HRT – as skin patches, gel or oral preparations. And the ‘side effect’ of bleeding or spotting can necessitate further ‘dose organising’ and lead some women to cease taking HRT (McClennan Reece, 2002). Tinkering with hormones to minimise side effects while trying to ease embodied experiences and/or mitigate long-term health effects involves complex medical practices. Indeed, to tinker is itself a form of caring. In attending to disruptions in how bodies respond to introduced substances – and the tinkering involved – we witness the complexities of care in practice. To care, here, aims for an ‘outcome’ that makes the woman ‘happy’. A similar sentiment was expressed by general practitioner Dr K, who felt that when discussing the side effects of HRT, its more ‘positive’ aspects need foregrounding:
HRT gets rid of most of your menopausal symptoms; it [protects] bone and cardiovascular [system], [and delays] the development of dementia or neurocognitive issues . . . if you try to put all of that to the patient, they probably will be happier. . . . I don’t think anyone likes to take medication every day, but you know [with information on the positive effects of HRT], they will agree to take it.
The aim may be to care with, to ensure women’s agency is preserved and amplified. However, the constraints of medical practice, the limited options available to women with EM and the experience of side effects from HRT can limit this effort, leading to a ‘swaying’ between caring for and caring with.
Responsibility and care
Hormones and cancer-related EM
The question of whether to recommend HRT featured differently depending on the practitioner’s specialisation and the cause of EM among the women they treated. Those who primarily or only saw women diagnosed with oestrogen-receptor positive cancers could not recommend HRT, which left them with fewer options to help women experiencing challenging menopausal symptoms (Vincent, 2015). In addition to the emotional dimensions involved in the care of women experiencing EM following cancer treatment, practitioners noted the ambiguities of ruling out HRT, depending on individual circumstances. When discussing vaginal atrophy among women who had experienced cancer, Dr H observed that they would consider prescribing vaginal oestrogen:
I have some women who elect to use some vaginal oestrogen acknowledging that there is a very, very, very small risk of it affecting their oestrogen dependent cancer. . . . they should be allowed to take the risks and benefits. . . . It’s not just about us saying, ‘you can or can’t do something’. It should be something that [women] should be allowed to make their own judgement [about] if they’re given the information.
This comment foregrounds responsible care that operates when practitioners see women diagnosed with oestrogen-receptor positive cancers and suggests differences between practitioners. Medical oncologist Dr P, for example, explained that while the prescribing of ‘water-based lubricants’ can alleviate certain symptoms, ‘I wouldn’t [prescribe], I would send them to a menopause clinic’. Dr P also noted that in their experience, ‘most women would not take it’ as they are concerned about their cancer risk.
Considerations of ‘risks and benefits’ of vaginal oestrogen occur in the clinical encounter and are part of the decision-making process. Uncertainty looms large in these descriptions and evokes a practice of care that requires enabling women ‘to make their own judgement’ (Dr H). This suggests an intrinsic complexity not only to HRT, but also to hormones more broadly where notions of risk and uncertainty continually circulate (Griffiths & Green, 2002, p. 219). Other practitioners perceived the need to recommend alternative avenues for care and steer women away from products containing oestrogen. Clinical psychologist Dr E, for example, described providing ‘free samples of personal lubricant’ with no oestrogen to help women experiencing difficulties with intimacy, and a few practitioners commented on referring women to ‘natural’ options such as exercise.
Care-as-choice
Previous studies have highlighted that women’s concerns about HRT include the idea that it is an ‘artificial’ or ‘synthetic’ treatment (Hyde et al., 2010). Such concerns have intensified following the Women’s Health Initiative (WHI), a 2002 study which asserted that combined HRT increased the risk of breast cancer and stroke amongst older postmenopausal women (Krieger et al., 2005; Natari et al., 2021). Several practitioners expressed concern regarding the interpretation of WHI findings and their pertinence to women experiencing EM. Dr N, an endocrinologist, noted that HRT use had since ‘dropped dramatically because there was a lot of fear about it’ among women and practitioners. Recognising such concerns but affirming the responsibility of the practitioner and the need to tailor care to individual women through assessment and providing choice, Dr W, an obstetrician-gynaecologist, observed that ‘the last decade or so has taught us that the dose of hormone you give each woman is different and the duration for which you continue that therapy is different’. However, for general practitioner Dr A, being based in a rural area somewhat limited their mode of care:
I’m a country GP, I’m not up with the latest [research on HRT]. There was a time when they said HRT protected against cardiovascular disease. I think that’s been disproven. I think that aspirin and exercise are as effective as HRT. I think what HRT does improve wellbeing and . . . mental wellbeing . . . I don’t force [HRT] down their throats.
The uncertainty and evolving research on HRT, as well as the possible constraints of being based in a rural area, can limit practitioners’ knowledge on the latest research and the choices they can communicate to women. Choice as part of caring, or care-as-choice, is not boundless – social and geographical circumstances interfere.
While HRT is viewed as an important therapy with potential benefits, study participants endeavoured to tailor care. Reflexive statements on doses, hormones and the changing research on HRT potentially evoke practices of ‘caring with’ in that consideration of individuality is foregrounded. Although in Dr A’s experience, the latter can be restricted. This suggests the difficulty of fully differentiating ‘caring for’ from ‘caring with’, especially since in a biomedical framework, the necessity for women with spontaneous EM to have HRT remains an overarching consideration.
The desire to preserve the body in as ‘natural’ a state as possible, rather than introduce manufactured substances, combined with fear about risks related to HRT, can lead some women to favour complementary medicines and alternative therapies and lifestyle changes (Stephens & Breheny, 2008) to deal with symptoms. The negotiation of women’s preferences for complementary medicines and alternative therapies reveals another layer of complexity for practitioners. When approached as a condition in a biomedical framework, EM may nonetheless entail a need for hormone replacement in clinical practice. Sociological studies among women experiencing menopause at the age of 50–51 have shown that menopause is sometimes positioned as a ‘natural’ phase that should not require ‘artificial’ medical intervention (Stephens et al., 2002, p. 353), and some women with EM also express a preference for not taking HRT (Knobf, 2002). Demonstrating a significant distinction between early menopause and menopause at the age of 50–51, the practitioners we interviewed emphasised the importance of hormone replacement due to the long-term health effects of EM. For Dr W, hormones remain crucial:
My big concern with women who have premature ovarian insufficiency is that if they don’t get hormones, then their bones and their heart health are at risk. So, I’d welcome them trying [complementary medicines and alternative therapies] for a short period of time. . . . But I would say, ‘We really do need to watch these other important parameters for health, which we’ve never seen improve on the sort of complementary therapies that you’re using.’
Dr W’s reference to ‘parameters for health’ reaffirms the centrality of hormones to women’s health, within a biomedical framework, thus leading to the recommendation of HRT for EM until at least 50–51 years old. In this framing, the association between risk and HRT is different. In contrast to women with menopause at the age of 50–51 who can face an increased risk of breast cancer due to HRT, women with EM confront the possibility of osteoporosis and heart disease because of not taking HRT (see Australian Menopause Society, 2020). This account further highlights the circulation of concepts of ‘measurable evidence’, especially in relation to bone and cardiovascular health, in clinical approaches to EM (Vincent, 2015). EM requires intervention because, as Dr W later added, ‘it’s not a normal physiological event’. It is thus, as framed in biomedicine, an outlier, an experience ‘outside’ a norm that complicates the work of care. Hence, the hormones lost following EM are part of the natural functioning of the body, but they require intervention due to being depleted too early.
Engaging with women who wish to try complementary medicines and alternative therapies requires medical knowledge, techniques and understanding. This is also an area where differences between practitioners emerged. Dr K noted that they preferred not to raise complementary medicines and alternative therapies with women because ‘nobody [has] proof’ of their effectiveness. The tensions involved in practices of care come to the fore here as Dr K endeavours to work within the framework of evidence-based medicine, while trying to provide ‘good’ care to women. For our participants, this could involve dealing with options and choices that lacked evidence. For example, despite commenting that ‘herbal preparations have very limited evidence’, Dr T advocated for a negotiation of views and a clear communication of risk in practices of care. As care is shared and oscillates between women and practitioners, so too do medical techniques constitute shared and ongoing practices with women. This is partly due to the broader trend of individuals’ increasing resourcefulness in seeking health information, including on HRT (Henwood et al., 2003).
The controversies surrounding HRT after the WHI study have resulted in the emergence of new therapies claiming to be less risky, including compounded bioidentical hormone therapy (CBHT). The attractiveness of CBHT partly results from its presentation and marketing as a ‘natural’ therapy, despite its production in laboratories, like conventional HRT. Marketing claims include that CBHT has fewer risks compared to ‘manufactured’ hormones ‘while providing menopausal symptom relief and even anti-aging benefits’ (Fishman et al., 2015, p. 79). When asked about CBHT, Dr O, an endocrinologist, described what they saw as the risks of this therapy and the responsibilities of the practitioner:
I discourage use of bioidenticals really . . . you don’t know exactly how much is in there. And because, if you’ve got a uterus, you’ve got to have . . . the correct amounts of oestrogen versus progesterone to prevent endometrial cancer. . . . The idea behind [CBHT] is a good one, in that it’s hormones that are basically chemically the same – at least that’s the way it’s marketed – as your own hormones.
For this practitioner, the lack of regulation of this type of therapy means that there is less (or no) control over the amount of oestrogen, progesterone or other hormones in the product. These comments are also nested in the ongoing significant controversy around these therapies, with little evidence on safety (Australian Menopause Society, 2018). Therein lies a tension identified by Mol (2008) when she juxtaposes the logic of choice to the logic of care. Choice, for Mol, invokes products, transactions and consumers, while care – particularly, we note, to care with – evokes processes of relational ethics that often include choices, but these ethics are irreducible to choice. However, with EM and HRT as case studies, we see the enmeshment of care-as-choice. The quote from Dr O on the need to communicate the lack of safety of CBHT points to the difficulty of unravelling care from choice. As we discuss above, HRT manifests in practitioners’ modes of care as essential yet complex: a potent mixture (or choice) that requires careful consideration, medical screening, interpretation and a balance of risks and benefits.
Shared (knowledgeable) care
To care often means excluding certain factors or experiences from consideration – it is imbued in complexity (Mol, 2008; Mol & Law, 2002). In our discussion above, we find practitioners discouraging the desire to try ‘natural’ therapies (Dr K), and assessing the risk of giving hormones such as oestrogen in some situations as ‘very small’ (Dr H). Care, then, is an organising process that (re)defines and (re)aligns priorities. It produces hierarchies, tensions and (in)coherence. In the case of our participants, we find the uniqueness of EM a key factor in how ‘best’ to care. EM can entail both short-term embodied experiences and long-term effects and has diverse causes leading to different treatment options. Thus, it enacts sets of connections with other illness experiences, and with other techniques and (non-)pharmacological treatments. It can be framed as offering practitioners possibilities and strategies that interfere and harmonise with one another. When explaining how they discuss HRT, practitioners emphasised the need for shared care and respectful exchange. Dr T explained:
[HRT] is an area where women are assertive . . . women have come to me and said that they’ve been told what to do and they haven’t had a chance to express their own beliefs and some of these are really personal, like ‘My mother or my sister died of breast cancer’. . . . as long as they have the information to make a decision and that I’ve listened to them, and they’ve listened to what I’ve had to say as a health professional . . . it really is up to the woman.
Women being knowledgeable and ‘assertive’ when considering HRT was a recurrent theme in participants’ interviews. This may reflect the qualities of the practitioners we interviewed, who had an interest in improving practices of care, and the educational and social backgrounds of the women visiting their practice. In addition, sociological research has shown that when considering HRT, it is common that women engage with online content and information given by practitioners (Hoffmann et al., 2003). In the quote above, HRT emerges as a possibility to be negotiated between knowledgeable women and practitioners, rather than a certainty; we would argue that the same applies to care itself. To care opens multiple possibilities that must be navigated and holds emotional dimensions for practitioners. For women experiencing EM, care often involves several practitioners in multidisciplinary teams (Vincent, 2015), hence multiple perspectives and approaches. Thus the directions and the outcome of care can be unpredictable, including because of women’s preferences and their knowledge – ‘it really is up to the woman’, as Dr T observed. Additionally, the specificities of EM where HRT is indicated and the possibility of taking the medication for many years can intensify the requirement to share care and knowledge. This suggests a medical practice that continually oscillates between caring with and caring for, with choice simultaneously central and peripheral to those practices.
The movement between caring with and caring for combines practices of adjusting HRT and a consideration of the ensemble of embodied changes associated with EM (or circulating around EM). This necessitates a negotiation around knowledge over HRT and alternative therapies, as discussed above, and questions of trust and care often featured as inextricable and relational in participants’ interviews. Trust and care are not limited to patients trusting doctors, but rather a relational movement between individuals. Enmeshed in this relation is the practice of comparing or ‘giving options’ to women. For Mol (2002, p. 248), comparing is integral to complexity and medical care: ‘comparing is not merely an intellectual task but also a part of health care practice’. She argues that the involvement of patients in the ‘comparison of treatments’ adds a layer of ‘double complexity’ (Mol, 2002, p. 248) as patient–doctor relations are often saturated with conflicting desires and emotions (Skirbekk et al., 2011). Exemplifying this process, Dr W observed:
You do not say, ‘Here, take this’. You say, ‘I think this would be a good idea . . . Are you worried about any of this, would you rather have it as a patch or a cream or a tablet, do you want to take it, so you have periods, or not?’
Comparison in care work is connected to the form HRT can take (patch, cream or tablet) and the embodiment of EM (‘periods or not’). There are a range of factors that women are asked to consider, including, as this article has highlighted, their own knowledgeability about HRT and what they want their care to look like.
Due to the extensive press coverage of HRT after the 2002 WHI study combined with the accessibility of online information 2 on HRT (Henwood et al., 2003), some practitioners noted the need to recognise varying levels of knowledge about HRT and the associated impact on care. Dr O affirmed that responsibility for treatment and decision-making ‘has to be’ shared because of some women’s ‘very high level of health literacy. . . . You can have quite good discussions about various risks and benefits . . . you try to do it collaboratively as much as you can.’ The relational aspects of care are apparent in this quotation as both inevitable and limited. There is multiplicity and contradiction in practices of care, and they can circulate in a somewhat restricted space. The recognition of multiplicity and the range of discourses on which women and practitioners draw to discuss EM and HRT can ‘enhance women’s sense of being listened to and can increase women’s satisfaction with their medical consultations’ (Stephens et al., 2002, p. 357). We would add that it also enhances medical practice itself, and it highlights the rich emotional practice of medicine; as Dr K, noted: ‘it is an honour [to be involved] in decision-making for somebody’s life . . . you are talking about a lifetime thing’. This comment weaves together several themes we have explored in this article. It gestures towards the complexities that EM, when framed as a ‘medical condition’, heralds, and questions of responsibility, choice and care.
Concluding discussion
Hormones and their purported replacement continue to matter. This exceeds HRT itself; for instance, research has shown that broader ideas of ‘hormone balance’ circulate in self-help discourse (MacKendrick & Troxel, 2022). However, despite HRT frequently featuring in popular media and public discourse, its connection to EM has received little attention, as have the practices of care of health practitioners in this context. By analysing the accounts of practitioners involved in the care of women experiencing EM, we have traced how they depict and engage with HRT in medical practice, highlighting the multiple roles that the therapy performs. Our analysis foregrounds that instead of a static and predictable object, HRT emerges as volatile and intricate, and at times, it is productive of a care–choice enmeshment that reflects the complexities that EM portends. Multilayered ambivalence and ambiguity pertaining to individual bodies and circumstances are navigated, while questions of responsibility and risk are foregrounded, where risk is often connected to not taking, instead of taking, HRT. Health practitioners’ interviews reflect how EM itself emerges as a non-unitary experience in medical practice – it enacts connectedness and relations with other embodied experiences or illnesses. In addition, EM remains tethered to HRT, whether the therapy is actively considered by practitioners and women, or lies at the periphery of possible treatments, for example due to certain cancers. This article has shown how medical practice oscillates between caring for and caring with – a logic of care that has blurred boundaries and encompasses practitioners, devices, choices and drugs (Mol, 2008). Practices of care, in the context of EM and HRT, are tied to the potentialities of HRT itself and, at times, care cannot be fully disentangled from choice.
Our intention in examining modes of care as they intersect with practices of tinkering and questions of complexity is not to provide a definite framework for identifying what is ‘caring for’ and what is ‘caring with’. Rather, we have endeavoured to shed light on intersecting modes of care where experimentation with and adjustment of HRT; responsibility, risk and choice; and knowledge and relationality circulate. HRT is enacted through and with multiple actors; it is an emergent and unstable substance. The actors involved in enacting HRT include women, practitioners, drugs and others involved in the clinical encounter, as well as emotional and relational dynamics. As grounded in our data, we acknowledge that practitioners in our study elected to share their experiences and that they were all working within a specific western medical system that is not necessarily representative of the issues connected to HRT and EM across the world (see Hemminki et al., 2004). It is also significant that most of our participants identified as women, demonstrating the gendering of care and care-giving in this area of women’s health. Our participants also show, overall, a strong commitment to improving standards of care. We have described these efforts in this article; however, we note that there is diversity and ambiguity in women’s experiences in the literature (Boughton & Halliday, 2008; Johnston-Ataata et al., 2020).
Our article aligns with the sociological and anthropological literatures on medical practice, choice and the doing of care (Hoffman et al., 2003; Mol, 2008) while contributing to this body of work by focusing on practitioners, HRT and the distinct case of EM. Hence, this article potentially offers a few implications for clinical practice. Considering and recommending HRT to women involves attending to individual embodiment and personal circumstances. Our article has highlighted that this includes experimentation and negotiation, which incorporate a degree of uncertainty – a dimension of medical practice identified in social research (Niland & Lyons, 2011).
Complexities, care and choice in medical practice have emotional dimensions for practitioners and women experiencing EM. Embodied changes known as ‘symptoms’ in the clinic are not experienced in isolation – they are felt, lived and sensed in diverse contexts. Likewise, for the ‘side effects’ of taking HRT, which as we have discussed can lead to further tinkering with dosage. Our article thus contributes to social theories of care and complexity by foregrounding their operation at the EM–HRT nexus. We have also demonstrated the distinctions of EM from ‘midlife’ menopause at 50–51 years old as the former can have more sudden and longer impacts connected to other illnesses, and experiences of embodiment, and requires realignments in care and an array of treatment choices. Thus, it is important to recognise how ‘doctoring’ and ‘caring’ continually involve attending to multiple complexities inherent in the life of the clinic. This also means accounting for the emergent capacities of HRT and attending to how it is enacted through several actors alongside the complexities yielded by the embodied experience of early menopause. In the context of a complex diagnosis and experience (EM) and an equally complex drug (HRT), care might best be referred to as potentiality – it is a set of flexible practices whose outcomes are not fully known or apparent. Accounting for tinkering in care can mean that care is a kind of relationality-in-progress, inflected with knowledge, risk and responsibility. And, for many of our participants, it cannot be fully removed from considerations of choice and control. Indeed, in some cases, care is better reframed as care-as-choice whereby the two are enmeshed and cannot be disentangled.
With this in mind, we would like to suggest that the enmeshment of care with tinkering, responsibility and choice in our case study requires an approach to caring that tends towards (or aims to be attuned to) an ethics of response-ability. The term is described in feminist scholarship as ‘a praxis of care and response’ (Haraway, 2012, p. 302). It is particularly fitting that this definition of response-ability comes from an article by Donna Haraway that partly examines oestrogen replacement therapy. While her focus and purpose differ from ours, we find her definition useful for attending to the richness and ambivalences of care, HRT and EM. Response-ability is processual. It stresses the ways relations of care are fragile yet significant, and in the case of practitioners working with HRT in their care for women experiencing EM, it points to the connections between knowledges that are disseminated and contested (about the body, women, drugs and side effects, pain, relations and so forth), the ways care circulates and mediates clinical/non-clinical relations, and practitioners’ ability and will to respond. We are not adjudicating whether our participants are response-able – indeed response-ability is always unfinished, flawed, fraught and in-progress – rather we suggest that, when framed as response-ability, caring for and caring with can become generative and attentive to women’s subjectivities within the emergent capacities of the EM–HRT nexus.
Footnotes
Acknowledgements
The authors would like to acknowledge project partners and funders: National Health and Medical Research Council (APP1116008), National Breast Cancer Foundation (PE–16–002), Australasian Menopause Society, Breast Cancer Network Australia, Endocrine Society of Australia, Healthdirect Australia, Healthtalk Australia, Monash Health, Women’s Health Victoria, members of the Reference Group, and the participants in the study for sharing their experiences so generously.
Funding
This research was supported by the National Health and Medical Research Council (APP1116008) and the National Breast Cancer Foundation (PE–16–002).
