Feminism and Healthcare: Toward a Feminist Pragmatist Model of Healthcare Provision
- 163 Downloads
This chapter covers a range of topics pertaining to the ontological, epistemological, and ethical intricacies, complications, and possibilities of providing quality healthcare to women patients regardless of disability, race, ethnicity, and class by using empirical examples of certain diseases. Methodological concepts through reflections on subjectivity and objectivity are presented as contested issues, and radical objectivity, a concept comprising subjectivity, objectivity, and intersubjectivity, is proposed as a knowledge paradigm that allows healthcare personnel and patients to make knowledge claims that are mutually recognized as valid. Three models of healthcare, paternalistic, person-centered, and feminist pragmatist, are presented, outlining the specific problems inherent in each model of healthcare provision. The paternalistic model allows for no agency on the patients’ part, elevating healthcare personnel, specifically doctors, to authoritative knowers. The person-centered model of healthcare grants some shared responsibility between healthcare personnel and patients, and some concessions are made toward patients as knowers. In the feminist pragmatist model, healthcare personnel and patients commit to equal relationships. Gender equality and gender equity are identified as insufficient tools for organizational change, and theories of professions are drawn on to deliberate about change at the systemic level.
KeywordsFeminism Methodology Ontology Epistemology Paternalism Pragmatism
1 Feminism and Healthcare: Starting Points
Feminism and healthcare is a topic so complex that no one could ever hope to cover it satisfactorily in a single chapter. Choices regarding perspective, suggestions, selection of examples of problems, and solution-oriented proposals must be made. These are the author’s choices, an author who is herself disabled by chronic disease, and is an academic. My views are colored due to my experiences of healthcare and the body I live in and with which I encounter the outside world. My ontological and epistemological points of departure are (a) women are human beings and entitled to fully participate in society, (b) “women” is not a generic term but consists of variations of being a woman and the perception by others of “woman’s” multiple meanings, and (c) a belief in collaborative knowledge building.
This revelation will be understood by some as biased, subjective, and therefore invalid. Based on their understanding of valid knowledge and scientific rigor, there are ontologies and epistemologies that stand in stark contrast to the research and knowledge paradigm within which I operate (Herr and Anderson 2005). In my paradigm, feminist pragmatism, it is encouraged to reveal points of departure for critical appraisal by others and then use new/other perspectives as an enriching and fundamentally necessary contribution toward a more comprehensive understanding of healthcare. It is argued that in doing so, other forms of knowledge will be elevated with the power to reject other forms, but in this chapter I envisage the reader as unfamiliar with this line of reasoning and as malleable toward accounting for what others perceive as unscientific, anecdotal, or invalid (Minnich 2005).
It is this uniqueness of each “knower’s” perspective and experience (here of healthcare) that is welcomed by feminist pragmatists exactly because multifarious perspectives, when listened to and used toward problem-solving, have the potential to and often do contribute to areas in society that are better equipped to offer solutions, benefiting more people than the few belonging to an elite whose views traditionally infuse policies, practices, and entire societal systems (Minnich 2005; Gillberg 2012). To understand this chapter is to acknowledge the existence of other paradigms than the alleged objectivity and neutrality offered in so many research disciplines, that, on closer inspection, rarely offer objectivity in terms of justice being done to all in equal measure, as research questions remain only partially or underinformed and results will not always enable a broad application of newly produced knowledge (Andrist 1997; Anjum 2016; Gillberg and Vo 2014; Minnich 2005; Reid and Gillberg 2014). Feminist pragmatists will ask questions such as for whom is knowledge produced and where “best practice” is devised. For this chapter, I have drawn on several aspects of healthcare, geographical diversity, and texts that span decades to convey some continuity for this complex and difficult topic.
2 Politically, Historically, and Culturally Embedded Healthcare
Healthcare is historically embedded in political systems and cultures with ongoing power struggles and shifting game plans coupled with ideas about privatized or public healthcare, healthcare rationing, and other rationales that have little or nothing to do with human beings’ needs (Kennedy 2012; Lian 2017; Nott 2002; Sherwin 1992). Such factors perpetuate inequalities prevalent in healthcare while they also create new problems. Some inequalities can be summed up as inadequate or no access to primary healthcare, long waiting times to receive an appointment for specialist care depending on where in a country or in which country patients live, and gendered notions of patients on the part of healthcare personnel (Cody 2003; Cook et al. 2017; Evans and Mafubelu 2009; Risberg et al. 2009).
Occasionally, as occurred with AIDS and women, battles are won, though not without personal tragedies and loss of life (Epstein 1996; Shotwell 2016). Health policies, official guidelines and diagnostic criteria, curricula for medical students, access to primary and specialist healthcare, health insurance policies, funding of research and inadequate to no treatments for certain conditions can, and often do, have dire consequences for people’s lives (WHO 2015; McDonnell et al. 2009).
While ontological and epistemological approaches in inquiry are culturally, ideologically, and politically informed, other factors contribute to healthcare remaining lacking for many women and men, but at the macrolevel inequalities in healthcare affect women more than men rendering chapters such as this a necessity. Differing schools of thought in medicine and organizational theories can constitute colliding ideas about how to organize healthcare in relation to notions of who, and what, the patient is. Patients can be many things to healthcare providers, which relates to academic disciplines’ predominant narratives about patients but also with what constitutes a disease. It could be argued that these other factors, to a large degree, belong to the field of theories and studies of the professions and issues pertaining to power and the struggle for recognition of expertise (Freidson 1993). Such a struggle occurs both within a profession and between different professions within the same organization or system. Healthcare represents the fulcrum of such a struggle. It is also a struggle in the field of tension between professions and organizations (Andrist 1997; Butler et al. 2004; Fenton 2016a, Fenton b, Freidson 1993; Hafferty and Light 1995; Hsu 2010; Humphries et al. 2017; Klein 2004; Light 2000; Pescosolido 2013; Risberg et al. 2009; Steen 2016; Tasca et al. 2012).
3 Paternalism Within Healthcare
Paternalistic practices, wherein providers confer a treatment or service upon a person or persons without their consent, ostensibly by reason of their limited autonomy or diminished capacity, are widespread in health care and in societies around the world… Numerous issues surround paternalistic practices.
Cause for alarm arises due to a branching off in recent decades to extreme paternalistic schools of thought, which evidence suggests is thriving, raising the question as to why such an ontology, because it is first and foremost an ontology in my opinion, has a place in healthcare systems.
A good interpersonal relationship between a patient and provider - as characterised by mutual respect, openness and a balance in their respective roles in decision-making – is an important marker of quality of care.
The Paternalistic Model
View of patient: The patient has no agency as a lay person and is therefore ignorant.
View of knowledge and learning: Only the medical doctor knows. Patients may be able to learn from their doctors but must recognize the latter are superior. Learning is one-dimensional and one-directional. Knowledge is objective and static.
View of medicine: What is, is, whatever the medical profession determines as true and valid. There are no margins for uncertainty on the part of the doctor.
View of impact of treatment and outcome validity: It is the patient’s responsibility to comply with prescribed treatments. If the outcome is undesirable, punitive measures for the patient will ensue; since the patient has no agency, only the medical doctor’s knowledge has validity.
Outcome: Recovery is determined by the medical personnel irrespective of the patient’s opinion, related to continued ill-health. Patients are discouraged from seeking further help.
The Neutral Patient Model
View of patient: The patient is neutral and ascribed value as a situated, subjective knower. As such, the patient possibly holds information that will be of use to medical and other healthcare personnel.
View of knowledge and learning: Knowledge is not one-dimensional since the patient is granted agency and recognized as knowing to some extent.
View of medicine: Medicine is a fluid field of knowledge, and learning is ongoing. What is best for the patient is a semi-open question, but ultimately healthcare personnel know better, and their advice ought to be followed.
View of impact of treatment and outcome validity: Patients as subjective knowers are entitled to report back and be believed if a treatment does not yield the desired outcome. Healthcare personnel will reconsider and discuss new ways forward with the patient. Outcome validity is determined by both medical doctors and patients.
Outcome: Partially shared responsibility for improved health, if symptoms persist and patient continues seeking medical help, uncertainty ensues. The patient is likely to be treated in a paternalistic manner due to system structure.
The Feminist Pragmatist Model
View of patient: The patient is a nonconforming, knowing human being in her own right, embodying a plethora of experience and perspective that may prove useful in solving the problem at hand; in other words, patients have full agency and are regarded as equals.
View of knowledge and learning: Knowledge is best constructed from a multitude of perspectives and must have a clearly defined applicable purpose to open-mindedly address problems with a view to satisfactorily resolving them in collaboration with those affected by the problem. Learning is a process, ideally grounded in meticulously researched fact and lived experience.
View of treatment and outcome validity: A genuine interest in the patients’ account of improvement or recovery. A treatment is only valid if the patient says the situation has been resolved satisfactorily.
Outcome: Based on system structure, it is unclear how far this model can accommodate patients with long-term healthcare needs. Theoretically, recovery occurs only if the patient says so and resumes pre-illness activity levels, which is acknowledged by the medical personnel.
These models are not discrete; there can be movement between models, barring the extreme paternalistic form, which arguably functions as a rigid ideology. While models are never complete or an accurate reflection of real-life situations, those detailed above might prove helpful in outlining the possibilities and obstacles healthcare personnel and patients can face. It is not easy to question one’s paradigmatic base let alone to arrive at the decision that an absolutist stance in healthcare does not and cannot translate into solidarity with patients when educated in model 1, especially if one’s belief in medical knowledge’s absolute expertise stands firm. However, it might be possible for those located in model 1 to acknowledge that patients are complex and knowing participants in society unlike the empty vessels that a strict positivist paradigm traditionally suggests. Even the most extreme paternalistic medical practitioners today should be able to recognize that patients are a heterogenic group of people with varying backgrounds, knowledge, and scientific and medical expertise. The fact that members of the healthcare professions and scientific communities fall ill, and that they are capable of critically appraising and discussing guidelines and policies, and offers of help by assessing research designs, selection criteria, methods, outcomes, research validity, and have insider knowledge of peer review processes, and that some of these patients will engage in informal learning settings to share and disseminate their knowledge rarely register with the paternalistic groups of medical practitioners. Once a patient, regardless of educational background and professional base, the reconstruction into an infantilized unknowledgeable subject without agency categorically occurs. A dismissal of capacity and ability on the part of patients holds no value, nor do measures that do not work qualify as serious offers of medical support.
Particularly at risk for paternalistic or extreme paternalistic encounters are patients with diseases whose symptoms are either designated as vague and diffuse or whose etiology is unclear (Lian 2017; Sherwin 1992; Wendell 1996). The illogical attribution of what counts as a serious illness, e.g., multiple sclerosis (MS), versus what is considered by some as an insignificant non-illness, myalgic encephalomyelitis (ME), despite extensive symptom overlap is a decision that leaves patients, many of them women and children, living precarious lives. In marketized, neoliberal academia, research that promises allegedly cost-effective results is produced that policymakers adopt and politicians propagate.
4 Healthcare for Whom, How, and Why?
What is? (ontological)
Knowledge for whom and why? (overlapping ontological and epistemological question)
What counts for knowledge/whose knowledge? (feminist epistemological interlinked questions)
What are the consequences of 1, 2, and 3? (reflection)
Does the privileged/more powerful party take responsibility? (feminist ethics)
These questions are fundamental as they produce answers that transcend the current rationale for healthcare provision, indicating the type of society healthcare personnel assume they are part of and contribute to, which is particularly important.
Methodology is more than deciding on methods for inquiry. Feminism, and specifically pragmatist feminism, encompasses a problem-focused questioning of healthcare provision as there is no such thing as an unbiased researcher, clinician, or healthcare practitioner, neutral in their approach to inquiry and clinical practice. Medical research is colored by the investigator’s preconceived notions and their interests (Edwards 2017; Geraghty 2016; Goldin 2016; Racaniello 2016; Staples 2017). Even rigorous and scientifically robust studies can yield results that are problematic, especially in the field of tension between the natural and social sciences, where doing science is not mathematically clear-cut and the parameters of what we need and ought to know are blurred. Many research questions that ought to have been asked and to have received funding have gone unasked, and been unfunded, leaving knowledge gaps detrimental to patient groups neglected due to their diseases lacking medical prestige (Bosely et al. 2015; Brown 2017; McEvedy and Beard 1970; Payton 2016; Risberg et al. 2009; Staples 2017; Wu et al. 2016). Consequently, there are many issues pertaining to women’s health and well-being that healthcare providers are ignorant of, be that willful ignorance owing to aforementioned rationales, belonging to schools of thought that dismiss entire patient groups, or actual ignorance in terms of not knowing. This is not a new or obscure phenomenon, as the research literature indicates (Andrist 1997; Kennedy 2012; Sherwin 1992).
A tenet of feminist inquiry is the acknowledgment that the most open-minded researchers are ontologically challenged (regarding the “what is?” and therefore, also, regarding the “what is not?”) as they are embedded in their cultures, academic disciplines that frame valid and to them relevant research in certain ways, and the political systems responsible for the organization of healthcare. Health policy, too, is infused with cultural notions about society’s order, e.g., women’s reproductive role, motherhood and women in the public sphere, and women as primary caregivers. Certain diseases are recognized in some countries but not in others or are culturally ascribed to a specific sex. To recognize that healthcare in any country is a political and cultural undertaking, influenced by notions of gender, social class, race, ethnicity, and chronic illness, and what constitutes a disability, is a vital first step toward an understanding of the place of feminism and as a logical extension, feminist-driven inquiry, in healthcare.
5 Why Paternalism Is Not Necessarily Remedied with Concepts and Practices of Gender Equality
Feminism in healthcare is partially about gender bias, but gender per se is not synonymous with feminism. To outline terms and definitions, a brief overview of terminology may be helpful (Risberg et al. 2009).
On an ontological level, issues of sameness/difference pertain to essentialism; in other words, are women and men the same or are they different, and if they are the same/different, how so? Practically speaking, this means whether or not women have the same rights as men and have or should have access to all sections of society. A relevant question in this chapter would be if we think that women should become surgeons, and if we think that, why we think this is a good idea. Is it, for instance, because they are human beings just as men are, with individual and divergent skills and interests, or because they represent other values than men and therefore have something to add?
On the epistemological level, discussions are about whether sameness/difference provides researchers with solid tools to ask meaningful research questions. Problems of difference/sameness are rooted in essentialism. The norm, as many claim, is still male, both in theory and clinical practice, so “sameness” can easily be mistaken “same as men”; in other words, women and men are the same provided that women behave like men and adjust to male norms. This would explain why there are women within paternalistic healthcare systems who suppress and mistreat women patients just like their paternalistic male colleagues. It is the system that is paternalistic per se. Recruiting more women into such a system does not make the system better for women patients; it remains the same, with the women adopting male norms in order to succeed. This also explains why gender awareness or even challenging gender bias does not necessarily entail fairness or inclusion, far from it.
6 Empirical Examples of Ontological and Epistemological Absences
6.1 Sick and Disabled Women’s and Men’s Experiences of Receiving Healthcare
In a recent study (Lian and Robson 2017), patients in Norway described the power struggle with healthcare personnel and medical doctors in terms of war metaphors. As previous studies indicate, physical symptoms inexplicable by current biomedical testing are a particularly contentious area characterized by conflict between patients and medical personnel (Bosely et al. 2015; Brown 2017; Edwards 2017; Geraghty 2016; Goldin 2016; McEvedy and Beard 1970; Racaniello 2016; Staples 2017):
We found that patients experience being met with disbelief, inappropriate psychological explanations, marginalisation of experiences, disrespectful treatment, lack of physical examination and damaging health advice. The main source of their discontent is not the lack of biomedical knowledge, but doctors who fail to communicate acknowledgment of patients’ experiences, knowledge and autonomy. War metaphors are emblematic of how participants describe their medical encounters. The overarching storyline depicts experiences of being caught in a power struggle with doctors and health systems, fused by a lack of common conceptual ground. (Lian and Robson 2017)
How can such inequities and inequalities be understood?
6.2 Hysterical Women
We should look upon the female state as being as it were a deformity, though one which occurs in the ordinary course of nature. (Aristotle, in Fricker and Hornsby 2000, p. 13).
The concept of hysteria dates to ancient Egypt though the term was used originally by Hippocrates who blamed the “disease” on uterus movement due to a lack of sexual activity in women (Tasca et al. 2012). Freud promoted the psychological model of hysteria, including men as potential sufferers, though the diagnosis is more commonly attributed to women. A more recent example is provided by ME, classified by the World Health Organization (WHO) as a neurological condition since 1969 following an outbreak at the Royal Free Hospital in 1955 (Tasca et al. 2012). In January 1970, two male psychiatrists, Colin McEvedy and William Beard, published a paper in the British Medical Journal that claimed, without either researcher examining any patients, that the Royal Free outbreak was a case of mass hysteria due to more women being affected: “Epidemic hysteria is a much more likely explanation…The data which support this hypothesis are the high attack rate in females compared with males.” That such conjecture can be classed as data, even in 1970, is a question that directly ties into methodology and the choices doctors make to this day, thereby perpetuating discriminatory practices in healthcare (McEvedy and Beard 1970; Staples 2017; Tasca et al. 2012). It is unfortunate that such blatantly sexist, untestable opinions can be so influential on the medical profession. The paradigmatic struggle continues, with the paternalistic school of thought (demonstrated via psychogenic models with little scientific basis), practiced by both male and female medical personnel, which originated with McEvedy and Beard’s work, still influencing the treatment of ME patients and sufferers of other conditions (Steen 2016).
Ascribing symptoms of organic illness in women as psychologically based “hysteria” has a long history; Freud diagnosed a 14-year-old girl as suffering with an “unmistakable hysteria,” claiming she was cured following his treatment. In fact, she continued to complain of abdominal pain and died within months of sarcoma of the abdominal glands (Webster 2003).
Arguably, use of the term hysteria has led doctors to believe they have found a diagnosis for symptoms, which in fact remain unknown, meaning they may miss organic medical conditions (Webster 1996). The psychiatrist Eliot Slater conducted a study of 85 patients diagnosed with hysteria in the 1950s. Upon follow-up a few years later, nearly half these patients had died or were suffering from a significant disability. One patient, a woman suffering from severe headaches, was diagnosed with “conversion hysteria” and within 2 years had died from a brain tumor (Webster 1996). Misdiagnosis of both men and women by the medical profession is hardly unknown, but the readiness of medical practitioners to ascribe a woman’s symptoms as psychological (read “hysterical”) in origin is problematic and can result in serious consequences (Steen 2016).
Webster’s quote is especially relevant given the rise of medically unexplained symptoms (MUS) where the paternalistic school proposes patients presenting with new symptoms be ignored and encouraged to undergo corrective or rehabilitative cognitive behavioral therapy (CBT) and similar “treatments” that often provide limited or no benefit to patients (Butler et al. 2004; Fenton 2016a; Kennedy 2012; Steen 2016; Tasca et al. 2012). The medical ethos, transmitted through medical training, introduces an inherent bias in how medical professionals approach the treatment of women compared to men, encouraging the dismissal of women’s concerns regarding their health and often treating female patients in a condescending fashion (Fenton 2016a; Freidson 1993; Mickle 2017; Sherwin 1992).
The paternalistic paradigm is particularly evident when applied to women presenting physical symptoms to a doctor. Medical personnel are more likely to ascribe a woman’s symptoms as emotional rather than organic in origin, resulting in misdiagnosis or the potential ignorance of serious medical conditions (Steen 2016) and poor treatment options and abuse – the patient led to believe they are responsible for their symptoms (Fenton 2016a; Mickle 2017).
For example, women are 50% more likely to be misdiagnosed following a cardiac arrest compared with men (Wu et al. 2016), which has a major impact on future health, reducing quality of life as un- or incorrectly treated heart attacks can result in irreversible damage to the organ - nearly 28,000 women die from cardiac arrest annually in the UK (Payton 2016). Women are also 30% more likely to be misdiagnosed following a stroke, and there are often significant delays in diagnosing serious conditions including autoimmune diseases, e.g., MS, which take an average of 5 years to be diagnosed, and endometriosis, which can take up to a decade (Mickle 2017).
A stark demonstration of gender variation in medical care is demonstrated through the treatment of pain (Fenton 2016; Hofman and Tarzian 2001). Women’s pain is more likely to be dismissed, and female patients are less likely to be given adequate pain medication than men. In UK Accident and Emergency departments, women and men presenting with similar abdominal pain receive different treatments, men waiting an average of 49 minutes for treatment compared to 65 minutes for women; the latter also receive lower levels of pain medication independent of body mass factors (Fenton 2016; Hoffman and Tarzian 2001).
Clinical studies determined that medical personnel consider female pain more likely to be emotional in origin, their pain “all in the mind.” This is alarming given evidence that doctors maintain such opinions even when clinical testing indicates the pain is real (Fenton 2016). Thus, pain in women is given a lower value than pain in men. Women experiencing chronic pain have an increased likelihood of being diagnosed with a mental health condition and prescribed psychotropic drugs (Calderone 1990; Fenton 2016; Hoffman and Tarzian 2001). This is harmful for both the mental and physical health of the patient, treating the condition as psychological may lead to serious organic conditions being undiagnosed and untreated.
Historically the ignoring of period pain, which can be as severe as that experienced during a heart attack, provides an example of the lower value placed on pain in women, “Despite affecting women and trans men around the world for days every month, the pain involved in menstruation is seldom questioned nor are serious attempts to alleviate it mentioned” (Fenton 2016).
The condition endometriosis affects 10% of women of reproductive age (approximately 176 million women globally) but, despite its debilitating effects, is often ignored or dismissed by the medical profession (Bosely et al. 2015). This situation has arisen due to the failure of the profession to investigate a “woman’s issue,” resulting in millions of women having their quality of life severely limited. Many GPs and specialists are ignorant of the condition leaving women to suffer for years without treatment. The UK has approximately 1.6 million sufferers, and the cost to the economy is estimated at £10.6 billion, yet research funding is limited, and women are often told to endure any pain or informed it is imaginary, “it’s in your head, girl. You have got to deal with it” (Bosely et al. 2015; Butler et al. 2004; Kennedy 2012; Nott and Morris 2002).
7 Paradigmatic and Ontological Struggles Within the Medical Profession and Other Healthcare Personnel and Its Implications for Patients
Much has been said concerning hierarchies within the medical profession and the paradigmatic delineation between medical specialities as well as the relationships within the different healthcare professions (Epstein 1996; Freidson 1993; Hafferty and Light 1995; Klein 2004; Lian and Robson 2017; Light 2000). These relationships create areas of tension and power struggles within the profession, leaving patients awkwardly posited. There are problems within the healthcare professions regarding status, prestige, conceptual framing of diseases, as well as fundamental differences in how patients are approached by members of different professional groups. This must be considered when discussing changes or the possibilities of ontological shifts in health and healthcare, particularly for the following reason: points of departure are so differently evolved that some healthcare personnel are far from an ontological shift toward, for instance, person-centered healthcare ((PCH) (Anjum 2016)). At one end of the scale are paternalistic or extreme paternalistic groups, the latter opposing patient participation unless to tick boxes if a funding body requires it, while others operate within a person-centered paradigm to varying degrees and with some success, e.g., medical action researchers who actively seek to involve patients because of a genuine desire for the patient. Impact of inquiry remains unclear, as discussed in a recent study (Cook et al. 2017). Methodological issues regarding long-term effects, recovery, accountability, and genuine participation on the part of the patients require further research and possibly better frameworks for (participatory) evaluation.
In addition, the medical profession has arguably undergone a de-professionalization in recent decades owing to new public management and state-imposed limits on the profession (Bezes et al. 2012). Medical doctors’ scope for action has to some extent been curtailed by new public management (NPM) (Bezes et al. 2012), but this is not the only reason for the uncertainties with which the medical professions grapple, and there are several discernible ontological movements in opposing directions, further complicating an understanding of possible ontological and epistemological changes in healthcare. The ethical consequences of a combination of a weakened medical profession, less time for patients and research due to more time spent on administration, and neoliberal ideology, people are responsible for their own health, as well as neoconservative forces, conjecture of the deserving versus undeserving, proactively aided and upheld by some medical schools of thought, are disadvantageous for patients presenting with “diffuse” symptoms within societies where the mainstream media no longer investigates ideological claims made by governments but instead propagates images of malingerers and benefits scroungers despite sound research clearly indicating that fraudulent behavior is minimal and an ideologically upheld myth (Duffy 2013; Stewart 2017).
8 A Problem-Solving Paradigm: Feminist Pragmatism
As for the possibilities of a transformative change toward a feminist pragmatist paradigm, ontological and epistemological trends occur on several levels, for one on the scientific level where scientific evidence is produced that debunks other findings as fatally flawed (Gillberg 2012; Minnich 2005; Reid and Gillberg 2014). Currently we see such a scientific struggle unfold between the upholders and defenders of trials that have been revealed as containing serious fallacies and flaws (Edwards 2017; Geraghty 2016; Goldin 2016; Kennedy 2012; Minnich 2005; Nott and Morris 2002; Racaniello 2016; Sherwin 1992).
At the grassroots level, ontological shifts are attempted by knowledgeable patient advocates moving in paradigms different to paternalistic hegemonies or entirely outside them. Concerning acquired immunodeficiency syndrome (AIDS), women advocates and women-specific symptoms and suffering led to revolutionary ontological, epistemological, and ethical shifts (Epstein 1996; Shotwell 2016).
A solution-focused epistemology in combination with a person-centered ontology seems a sensible proposition. A feminist pragmatic approach would allow the healthcare professional to feel recognized and respected while providing room for patients to express themselves. The focus is placed on the problem that requires solving rather than on the patients’ class, disability, or sex. It allows clinicians and patients to disregard ongoing power struggles between paradigms, at least to some extent, creating room for change. Furthermore, a solution-focused approach encourages medical practitioners to unpack their medical knowledge and apply their scientific curiosity.
Humility toward what we ought to know might not be known yet and humility toward another human being seeking help for the discomfort they are in, a fundamental belief in human dignity, are essential to the practice of medicine and provision of healthcare. In other words, while we cannot know what we don’t know, the choice to listen to patients without prejudice can be made. A concession regarding the patient’s knowledge about their specific reason for seeking help can be made.
There are further choices for healthcare personnel that could be described as feminist and can become pragmatist in addition, by concentrating on the impact they have and resulting feedback (what works/does not work), allowing for evaluation, critical debate, and renewed and improved efforts to enhance healthcare. But is PCH enough provided there is a genuine ambition to end inequalities due to sex, color, race, social background, and disability? PCH is a significant step in the right direction but may not have the capacity to bridge the gap between healthcare providers and women-specific problems concerning accessing and receiving adequate treatment (Nott 2002). For one, “person” is not a powerful enough word or concept to capture the complexities of being a woman seeking medical help, as the empirical examples above illustrate. The noun person suggests an imagined homogenous patient who responds well to drug treatments designed for a perceived average patient. While this has advantages, gender stereotyping is already built into “person.” Healthcare personnel are only human and will continue to ascribe characteristics and symptoms to a sex.
PCH heralds a shift in ontological and epistemological repositioning, away from paternalistic paradigms, as it becomes impossible to apply methods which are in stark contrast to ontologies such as evidence-based medicine, as the latter effectively disregards individuals’ suffering. PCH presents a viable alternative to a paternalistic healthcare model as the former requires genuine consideration of an individual’s health, something that cannot be easily accommodated within a methodology that “ultimately reduces uniqueness and complexity to the sum of various averages, or derives individual propensities from statistical frequencies” (Anjum 2016).
10 A Feminist Pragmatist Discussion
A step further, then, the feminist pragmatist proposition, simple as it may seem initially, is subversive in that it enables medical professionals to reassert their expertise instead of acting as the state’s extended arm in stripping patients of their right to adequate healthcare (Stewart 2017). Medical doctors who put patients’ health problems first until they are satisfactorily resolved would commit an act of medical empowerment as well as empowering their patients, rejecting dogmatic administrative dictates of whichever economic rationale they must operate and negotiate their professional expertise under (cf. Freidson 1993; Pescosolido 2013; Risberg et al. 2009). This is a pragmatist stance that becomes feminist the moment medical practitioners recognize and acknowledge that women-specific healthcare is a prerequisite to resolve problems that indeed are women specific. Heterogeneity, “otherness,” and embodied experience of health would become the norm in encountering “woman,” be that a cis woman, an old woman, or a young woman wearing a niqab.
Inherent to feminist pragmatist thought lies the concept of radical objectivity (Minnich 2005). This ought to appeal to healthcare personnel in that radical objectivity includes subjectivities and intersubjective knowledge building. Medical doctors would be freed from the onerous roles of “knowing best” and expectations of “authoritative” knowledge.
In healthcare, what is, what is known, and what counts for knowledge are questions that are intrinsically interwoven with issues of equity and equality. As this chapter has demonstrated, to do patients justice is no easy undertaking in systems that are driven by other rationales than patients’ best interests. Professional standards, guidelines, as well as healthcare personnel’s own beliefs and prejudice can cause problems for patients, especially for mis- or undiagnosed women. While there are differences in the provision of healthcare globally, there are certain universal truths concerning discrimination against women seeking adequate healthcare, and to some extent these commonalities evolve regardless of women’s backgrounds. Preconceived notions about women’s health are still rooted in historical misconstruing, with western philosophy being as unhelpful in this respect as any other philosophy or cultural expression elsewhere in the world. Medical history and western philosophy have construed some fantastical explanatory models through time. The wandering womb being only one of many explanations as to why women are untrustworthy and intellectually inferior to men.
Knowledge, if regarded as collaborative endeavor and co-produced by applying a relational and systems critical approach, can potentially enable robust healthcare relationships to form (Gillberg and Vo 2014; Reid and Gillberg 2014; Cook et al. 2017). If inequalities, inequities, and power imbalances between medical doctors and patients are acknowledged and proactively addressed as problematic, the risk of diverting into more paternalistic concepts and practices of healthcare is minimized. As it makes sense to regard patients as knowledgeable and to assume they wish to live full lives, the need for paternalistic stances let alone the extreme paternalistic can in fact be considered obsolete.
For the sake of debate, however, let us assume patients have no agency and are empty vessels devoid of decision-making skills. An extreme paternalistic approach to patient care would be to tell them exactly what to do based on the medical professional’s assessment of their symptoms. The assessment takes 5 to 10 minutes, and there is no patient voice. Let us assume the patient follows the doctor’s orders stringently, attends therapy sessions religiously, ingests medicines unquestioningly, and then, reluctantly, even guiltily, discovers the therapy sessions do not yield the desired results or that the medicines trigger adverse events. Women are particularly vulnerable to self-blame and will endeavor to self-correct and possibly intimate improvements where there are none. They may also feel inclined to blame themselves for lacking therapeutic success and the ineffectiveness of medicines or any side effects. If they revisit the doctor’s office, it will be reluctant unless their symptoms give cause for alarm. Concurrently, the underlying cause or causes for their symptoms go unnoticed, deteriorate, and, at worst, cause death. The more educated patients are, the less likely they are to seek medical help (Robson and Lian 2017), so by the time they seek help, months may have passed since the initial symptoms appeared. In addition, a long period of non-/mistreatment may occur due to misdiagnosis or no diagnosis due to the label of MUS. Once a psychogenic label like MUS appears on a patient’s notes, they will receive adequate healthcare only with great difficulty, even when presenting with new symptoms (Lian and Robson 2017). It is a feminist pragmatist stance to reject such practices as impractical and unreasonable because they are impractical and unreasonable both for the affected individual and the wider societal context within which these situations unfold. The social fabric of belonging into a caring society is rendered asunder by extreme paternalistic views of women’s and men’s bodies, but women are more affected by such conduct (see above).
In summary, healthcare urgently requires an ontological and epistemological shift at the paradigmatic level, which is not to confuse different types of knowledge and their specific values with mythical claims about the scientific method as the only valid source of knowledge. Subjective knowledge is not “merely subjective” or inferior to “objective knowledge,” and objective knowledge remains elusive while it is infused with fallacies as previously discussed (Minnich 2005). There is a need for radical objective knowledge that comprises all types of knowledge and experience, and failing to provide this for ideologically driven or paradigmatic reasons is unacceptable and detrimental to women’s and men’s lives (Gillberg and Vo 2014). As emphasized previously, for women, the stakes are invariably higher, and healthcare personnel have the capacity, ability, and power to alleviate suffering beyond examination rooms, patients’ notes, and limited appointment times, by rethinking their professional concepts and practices, several of which have been discussed in this chapter.
- Andrist L. A feminist model for women’s health care. Nurs Inq. 1997;4:268–74. https://doi.org/10.1111/j.1440-1800.1997.tb00113.x.CrossRefGoogle Scholar
- Bosely S, Glenza J, Davidson H. Endometriosis: the hidden suffering of millions of women revealed. The Guardian. 2015. https://www.theguardian.com/society/2015/sep/28/endometriosis-hidden-suffering-millions-women. Accessed 15 Oct 2017.
- Brown L. Endometriosis treatment ‘unacceptable’ and women aren’t diagnosed quickly enough. BBC Newsbeat. 2017. http://www.bbc.co.uk/newsbeat/article/39364958/endometriosis-treatment-unacceptable-and-women-arent-diagnosed-quickly-enough. Accessed 27 Sept 2017.
- Duffy S. A fair society? How the cuts target disabled people. Resource document, The Centre for Welfare Reform. 2013. http://www.centreforwelfarereform.org/uploads/attachment/354/a-fair-society.pdf Accessed 20 Sept 2017.
- Epstein S. Impure science: AIDS, activism, and the politics of knowledge. San Diego: University of California Press; 1996.Google Scholar
- Evans T, Mafubelu D. Women and health. Today’s evidence tomorrow’s agenda. Report. World Health Organisation. 2009. http://www.who.int/gender/women_health_report/full_report_20091104_en.pdf. Accessed 15 Nov 2017.
- Fenton S. How sexist stereotypes mean doctors ignore women’s pain. The Independent. 2016a. http://www.independent.co.uk/life-style/health-and-families/health-news/how-sexist-stereotypes-mean-doctors-ignore-womens-pain-a7157931.html. Accessed 27 Oct 2017.
- Fenton S. Period pain is officially as bad as a heart attack – so why have doctors ignored it? The answer is simple. Online article, The Independent. 2016b. http://www.independent.co.uk/voices/period-pain-is-officially-as-bad-as-a-heart-attack-so-why-have-doctors-ignored-it-the-answer-is-a6883831.html. Accessed 25 Oct 2017.
- Freidson E. How dominant are the professions? In: Hafferty FW, McKinlay JB, editors. The changing medical profession: an international perspective. New York: Oxford University Press; 1993. p. 54–66.Google Scholar
- Fricker M, Hornsby J. The Cambridge companion to feminism in philosophy. Cambridge: Cambridge University Press; 2000.Google Scholar
- Gillberg G. A methodological interpretation of feminist pragmatism. In: Hamington M, Bardwell-Jones C, editors. Contemporary feminist pragmatism. New York: Routledge; 2012. p. 217–37.Google Scholar
- Goldin R. PACE: the research that sparked a patient rebellion and challenged medicine. Sense about Science USA. 2016. http://senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/. Accessed 10 Nov 2017.
- Govender V, Penn-Kekana L. Gender biases and discrimination: a review of health care interpersonal interactions. Women and Gender Equity Knowledge Network. 2007. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.493.104&rep=rep1&type=pdf. Accessed 25 Oct 2017.
- Hsu J. The relative efficiency of public and private service delivery. World Health Report. World Health Organisation. 2010. http://www.who.int/healthsystems/topics/financing/healthreport/P-P_HSUNo39.pdf. Accessed 15 Oct 2017.
- Kennedy A. Authors of our own misfortune? The problems with psychogenic explanations for physical illnesses. South Willingham: The Village Digital Press; 2012.Google Scholar
- Light DW. The medical profession and organizational change: from professional dominance to countervailing power. In: Bird C, Conrad P, Fremont AM, editors. Handbook of medical sociology. Prentice Hall: Upper Saddle River; 2000. p. 201–16.Google Scholar
- Mickle K. Why are so many women being misdiagnosed? Glamour. 2017. https://www.glamour.com/story/why-are-so-many-women-being-misdiagnosed. Accessed 18 Oct 2017.
- Minnich EK. Transforming knowledge. Philadelphia: Temple University Press; 2005.Google Scholar
- Nott SM. Body beautiful? Feminist perspectives on the World Health Organisation. In: Morris A, Nott S, editors. Well women. The gendered nature of health care provision. Aldershot: Ashgate Publishing Limited; 2002. p. 145–64.Google Scholar
- Nott SM, Morris A. All in the mind: feminism and health care. In: Morris A, Nott S, editors. Well women. The gendered nature of health care provision. Aldershot: Ashgate Publishing Limited; 2002. p. 1–20.Google Scholar
- Payton M. Doctors are failing to spot heart attacks in women – these are the symptoms. The Independent. 2016. http://www.independent.co.uk/life-style/health-and-families/health-news/women-heart-attacks-misdiagnosis-men-statistics-study-says-a7216661.html. Accessed 25 Oct 2017.
- Racaniello V. No ‘recovery’ in PACE trial, new analysis finds. Virology blog. 2016. http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/. Accessed 30 Sept 2017.
- Reid C, Gillberg C. Feminist participatory action research. In: Brydon-Miller M, Coghlan D, editors. The SAGE encyclopaedia of action research. New York: SAGE; 2014. p. 343–6.Google Scholar
- Sherwin S. No longer patient. Feminist ethics & health care. Philadelphia: Temple University Press; 1992.Google Scholar
- Shotwell A. Against purity. Living ethically in compromised times. Minnesota: University of Minnesota Press; 2016.Google Scholar
- Staples S. During ME awareness week we revisit the toxic legacy of McEvedy and Beard. Online article. The ME Association. 2017. http://www.meassociation.org.uk/2017/05/during-me-awareness-week-we-revisit-the-toxic-legacy-of-mcevedy-and-beard-10-may-2017/. Accessed 03 Nov 2017.
- Steen L. The wilderness of the medically unexplained. Resource document. theBMJopinion. 2016. http://blogs.bmj.com/bmj/2016/08/25/lisa-steen-the-wilderness-of-the-medically-unexplained/. Accessed 19 Nov 2017.
- Stewart M. Cash not care, the planned demolition of the UK welfare state. London: New Generation Publishing; 2017.Google Scholar
- Webster R. Why Freud was wrong: sin, science and psychoanalysis. London: Harper Collins; 1996.Google Scholar
- Webster R. Freud. London: Weidenfeld & Nicolson; 2003.Google Scholar
- Wendell S. The rejected body. Feminist philosophical reflections on disability. New York: Routledge; 1996.Google Scholar
- WHO. Road Map for Action (2014–2019). Integrating Equity, Gender, Human Rights, and Social Determinants into the Work of WHO. Report. World Health Organisation. 2015. http://www.who.int/gender-equity-rights/knowledge/web-roadmap.pdf?ua=1. Accessed 28 Sept 2017.