Book review: Unheard: The Medical Practice of Silencing

Unheard offers a bold intervention to realise health equality for minoritised communities. In a nutshell, Dr Rageshri Dhairyawan, a medical doctor working in the National Health Service (NHS), draws from the philosophical framework of epistemic injustice ¹ to explore ‘who gets listened to and who doesn’t in medicine and how this leads to culture of silencing that exacerbates health inequities, unjust differences in health, on an individual and global scale’. ² In asking the question about who is and is not listened to, Unheard does the very challenging and essential work of exposing long-standing and deeply discriminatory silencing practices within the NHS and research practices across seven substantive chapters. With these fault lines thoroughly exposed, each chapter concludes with helpful guidance for various stakeholders aimed at realising epistemic justice in this critical social space. Dhairyawan makes a compelling case that epistemic justice is essential if the health system and the NHS are to meaningfully play their part in addressing health inequities and plug knowledge gaps that cause avoidable harms and cost lives.

The book is relevant to anyone impacted directly or indirectly by the health system: patients, healthcare professionals, and researchers. However, it is also a relevant resource for those with a particular socio-legal interest in medical law and ethics because it provides important context to some of the challenges that emerge when healthcare-related issues intersect law and medical ethics.

In my own research on obstetric violence and abuse during facility-based childbirth, silencing and exclusion, and the resulting feelings of dehumanisation are repeatedly reflected in the literature. ³ These childbirth experiences raise serious and deep ethical concerns about how we construct ‘care’, and drive socio-legal questions about what we want accountability for and what forms of accountability are needed. I was particularly drawn to Unheard because of its framing of ‘silencing’ as a discernible ‘medical practice’. That is, Dhairyawan recognises silencing as something capable of being separated out from the every-day mechanical clutter of providing care and thus makes it available to critical examination. While intrigued, I did approach the monograph will some scepticism. Having been on the receiving end of silencing practices during healthcare and being well and truly embedded in obstetric violence research, I have grown cautious of contributions by healthcare professionals’ that offer their own analysis of how to improve health systems for patients. In the realms of obstetric violence, researchers are well-aware of the concern that ‘schemes of perception’ are generated and maintained by the ‘medical habitus’ ⁴ which undermine comprehensive understanding of the many ways that medicine is experienced by others who are not in the professional bubble. Or, that ‘fish can’t see water’. ⁵ Nevertheless, Unheard did not disappoint. Dhairyawan’s strong intersectional grounding and palpable personal effort to candidly reflect on issues in the health system, positions her to see the details of ‘water’ and see beyond the systems of perception embedded in the profession that tend to subvert rigorous and honest interrogation of medicine and the very health system she works in.

The monograph stands out as a particularly compelling contribution to the field because it is informed by Dhairyawan’s very distinctive basket of lived experiences. She approaches the issue of silencing as a woman of colour who was silenced as a patient, as a healthcare professional who was/is silenced by her colleagues and the health system itself, as a doctor who has silenced her own patients in the past, and as researcher. On my reading, the book captures the many intersectional selves of Dhairyawan, her patient-self, her doctor-self, and her researcher-self. Dhairyawan takes full advantage of her familiarity with these diverse and complex ways of interacting with and within the NHS to collect and narrate the lived experiences of other marginalised patients, healthcare professionals and researchers to provide a comprehensive and shocking account of the culture of silencing within the NHS. In simultaneously embodying the positions of a marginalised patient, doctor and researcher and actively facilitating other marginalised voices, she dissolves the boundaries between power and vulnerability, and privilege and exclusion that divide these different communities to enable stirringly candid reflections of the state of patient care in the NHS.

True to her lived experiences as an unheard patient within the NHS, Dhairyawan starts from the premise that it is not responsibility of a patient to ‘speak up’ or ‘advocate for themselves’. The concern about being unheard is not about ‘speaking up’, but about being listened to. Her patient-self asks, ‘Why should the responsibility to speak up lie with those not listened to, rather than the healthcare system whose job it is to listen carefully?’ ⁶ Her upfront recognition of ‘listening’ as a core feature of healthcare provides the springboard from which Dhairyawan interrogates how patients are silenced and considers why doctors do not listen to their patients, centring her analysis on the themes of dismissing and devaluing patients (chapters 1 and 2). She maps disturbing real-life stories of preventable harms and deaths and links these to a long history of healthcare professionals doubting patients’ testimonies and broader social inequalities that create and maintain a power-imbalance that almost always privilege the position of healthcare professionals: ‘patients go unheard in healthcare because they are regarded as being untrustworthy and unable to be objective about their illness’. ⁷

Taking a strong stance on accountability towards her patient-self and thus the broader patient body, Dhairyawan’s doctor-self daringly recognises that she is implicated in silencing practices when caring for her own patients. However, Dhairyawan is steadfast in her conviction that she never became a doctor to silence and harm patients:

When I started medical school, I had every intention of listening to my patients’ concerns with empathy, eliciting the salient details to make a diagnosis and treat them. How did I go from this laudable aim to being a doctor who didn’t listen? ⁸

The question unearths damning structural and institutional fault lines that actively undermine listening to and hearing patients. These include the learned practice of silencing in medical school; ‘medicine’s hidden curriculum of brutal pragmatism’ ⁹ ; and notions of productivity as something other than quality consultations with patients as diverse individuals. Ultimately, ‘it can be gruelling trying to do your best within a system that often works against you’. ¹⁰

Dhairyawan’s insights and research lays bare the depth of silencing practised within medicine. Under the theme of ‘excluded’ (chapter 3), and linked to concerns of working in a ‘system that often works against you’, her doctor-self charts lived experiences that expose discriminatory silencing practices towards minoritised colleagues within the NHS which are informed by long-standing racist and sexist stereotypes. These conditions cultivate a culture of exclusion and instil a notion of ‘credibility deficit’ ¹¹ where some colleagues perceive her professional contribution as less credible than they ought to be. These silencing practices have huge implications that move beyond the employment context for minoritised healthcare professionals: ‘When white male doctors are viewed as the “norm,” what happens to everyone else?’ ¹² It manifests as a health system that exacerbates health inequalities because when doctors are unheard, the voices of their patients are silenced too, and concerns particular to those communities are sidelined.

Drawing from various patient and researcher experiences (including her own), Dhairyawan uses the theme of ‘missing’ (chapter 4) to expose gaps in collective medical knowledge about conditions that mainly affect women, people from minoritised communities, and people from the Global South. She links these gaps in knowledge to discriminatory silencing practices entrenched and sustained by coloniality and broader structural and institutional discrimination towards minoritised researchers or those from the Global South:

When minoritised researchers are silenced, they cannot research health conditions that predominantly affect their communities around the world. Without their work we will continue to miss vital components in our shared knowledge of ourselves as human beings – this makes it everyone’s problem. ¹³

Noting the important role of knowledge in care and health equity, Dhairyawan questions what counts as credible and trustworthy knowledge used to inform and guide medical care and treatment plans. Under the theme of ‘objective’ (chapter 5), she traces medicine’s historical and contemporary privileging of objective medical evidence (signs, test results, data generated through quantitative research methods) over subjective evidence (patient testimony, experimentation, observation). Like many critical researchers, ¹⁴ it is her position that we need to approach claims to objectivity with a sharpened critical lens, because all researchers approach their research from a particular positionality and ‘like everyone in society, they hold their own inherent biases and prejudices’. ¹⁵ Furthermore, she emphasises that we must be on the lookout for all the kinds of knowledge excluded when we support systems that privilege ‘objective’ knowledge. Exclusion of these knowledges leads to silencing, and if there is anything this book drives home – silencing in healthcare can have fatal consequences, particularly for those from marginalised communities. ‘Subjective questions and information hold value, and while the objective holds importance, it shouldn’t mean that we silence what the subjective can bring’. ¹⁶ Dhairyawan calls for a bringing-together of the two forms of evidence to support a comprehensive foundation to work from and highlights where this approach as succeeded, such as in the case of the Co-Production Collective based on patient and public involvement to support their involvement in research.

Dhairyawan uses the theme of ‘roar’ (chapter 6) to trace the successes of grassroots patient activism to ensure patient voices are heard, especially the voices of racialised and minorities communities. Drawing mainly from various movements related to ensuring access to life-saving treatment for HIV/AIDS and her lived experiences of working in this area, the chapter reminds us:

Who a disease predominantly affects influences how much patients are listened to and how much they are silenced, as individuals and as groups. This in turn influences how much resource is put into addressing the disease, the research done and how much knowledge we have about it. ¹⁷

The ‘roar’ of patient activism was compelling enough to cause fundamental changes in the HIV/AIDS health care landscape; however, the chapter ends with a stern reminder that to improve healthcare, the health system must be equipped to hear patients.

The reminder to hear patients leads the reader to the final substantive chapter, themed ‘justice’ (chapter 7) which advocates for ethical listening. True to Dhairyawan’s various selves and their lived experiences, she frames ethical listening as the pathway to justice, particularly for speakers from racialised and marginalised communities. ‘Ethical listening’ is not a specifically defined concept, but several obligations can be distilled from the various narratives she draws from in her analysis. For instance, ethical listening includes the obligations to ensure that ‘speaking up’ does not cause harm to the speaker; to address intolerance, disrespect or ignorance embedded in the audience; and to ensure that ‘speaking up’ does not take the form of coerced and /or unpaid labour, with speakers being credited appropriately. More meaningfully, ethical listening also includes the obligation to ensure that racialised and minoritised speakers are not subjected to epistemic exploitation which is a particular form of exploitation that allows privileged communities to remain ignorant about oppression, especially in the context of Equality Diversity and Inclusion work. Thus, ethical listening requires being aware of and systemically countering structures of oppression and power imbalances that work to maintain wilful ignorance and that bread ‘default scepticism’ about the expert knowledge of the speaker. Ultimately, ethical listening requires more than mere listening, the act of listening needs to have meaningful and concrete consequences: it needs to make important inroads to improving healthcare and the health system for everyone – patients, healthcare workers and researchers.

Unheard takes important steps towards epistemic justice by surfacing and tracing the ‘hidden in plain sight’ medical practice of silencing within the health system, and by offering concrete ways to dismantle the practice from an individual, institutional, and structural perspective. Dhairyawan’s accessible approach to writing about complex health systems, charting various lived experiences, and her user-friendly navigation of complex theoretical frameworks makes this monograph a scholarly gem for ‘outsiders’ to the health system. The monograph is undoubtedly an important resource for the general public and healthcare professionals seeking to improve how they care; however, it is a thoroughly informative read for socio-legal and medical law and ethics scholars who make it their business to interrogate and remedy health-related issues through application of various legal and regulatory mechanisms.