The word ‘compassion’ is ubiquitous in modern healthcare. Yet few writers agree on what the term means, and what makes it an essential trait in nursing. In this article, I take a historical approach to the problem of understanding compassion. Although many modern writers have assumed that compassion is a universal and unchanging trait, my research reveals that the term is extremely new to healthcare, only becoming widely used in 2009. Of course, even if compassion is a new term in nursing, the concept could have previously existed under another name. I thus consider the emotional qualities associated with the ideal nurse during the interwar period in the UK. While compassion was not mentioned in nursing guidance in this era another term, ‘sympathy’, made frequent appearance. The interwar concept of sympathy, however, differs significantly from the modern one of compassion. Sympathy was not an isolated concept. In the interwar era, it was most often linked to the nurse’s tact or diplomacy. A closer investigation of this link highlights the emphasis laid on patient management in nursing in this period, and the way class differentials in emotion between nurse and patient were considered essential to the efficient running of hospitals. This model of sympathy is very different from the way the modern ‘compassion’ is associated with patient satisfaction or choice. Although contemporary healthcare policy assumes ‘compassion’ to be a timeless, personal characteristic rooted in the individual behaviours and choices of the nurse, this article concludes that compassionate nursing is a recent construct. Moreover, the performance of compassion relies on conditions and resources that often lie outside of the nurse’s personal control. Compassion in nursing—in theory and in practice—is inseparable from its specific contemporary contexts, just as sympathy was in the interwar period.
Jennifer Watermeyer, Victoria Jane Hume, Tshegofatso Seabi, Rhona Nattrass
There is a growing interest in using drama techniques and theatrical performance to disseminate health information to lay audiences as part of community engagement projects. This process can be challenging for a number of reasons, however. In this paper, we describe the process and pitfalls of an interdisciplinary project involving the development and performance of a play about diabetes mellitus. The play formed part of a long-term, three-way community engagement project between social science, applied drama and a diabetes clinic in South Africa. Building on a framework derived from a number of applied drama methods, we elicited narratives from key ‘storytellers’ that were developed and embodied by actors in a new performance called Blood Sugars. Creating this play provided insight into working in an interdisciplinary space and highlighted the importance of establishing shared goals and joint ownership of the project right from the outset. This was without doubt a challenging project and the complexities of finding common ground across three disciplines are not to be underestimated. In this paper, we explore the collaboration and its challenges, drawing on the framework of complexity theory. In particular, we examine the layers of complexity that emerged as a result of the interdisciplinary nature of the project and the demands of balancing the authenticity of the stories with the perceived requirements of health messaging. We consider the methodological, conceptual and ethical challenges of this type of research, and discuss some recommendations for teams taking on similar complex multidisciplinary research and intervention projects.
Ayo Wahlberg, Dong Dong, Priscilla Song, Zhu Jianfeng
In November 2018, a scientific scandal broke when news emerged that the world’s first gene edited babies had been born in China on the eve of the 2nd International Summit on Human Genome Editing in Hong Kong. He Jiankui had recruited a total of seven couples who were in need of fertility treatment to participate in an effort to clinically apply human embryo editing with the promise that, if successful, their future children would be protected from HIV. While He Jiankui has since been jailed for illegal medical practice and much has been written about his unethical and flawed “experiment,” in this article we suggest that the Hong Kong summit nevertheless marked the moment when human embryo editing came to be platformed. Human embryo editing brings together a complete set of new reproductive and genetic technologies into a total bio-reproductive platform shaped by socio-technical “disease free” imaginaries.
Paul A Martin, Ilke Turkmendag
Two major reports in the UK and USA have recently sanctioned as ethically acceptable genome editing of future generations for the treatment of serious rare inherited conditions. This marks an important turning point in the application of recombinant DNA techniques to humans. The central question this paper addresses is how did it became possible for human genetic engineering (HE) of future generations to move from an illegitimate idea associated with eugenics in the 1980s to a concrete proposal sanctioned by scientists and bioethicists in 2020? The paper uses the concept of a regime of normativity to understand the co-evolution and mutual shaping of technology, imaginaries, norms and governance processes in debates about HE in the USA and UK. It will be argued that interlinked discursive, institutional, political and technological changes have made proposals for the use of genome editing in the genetic engineering of future generations both “thinkable” and legitimate.
Stine William Adrian, Charlotte Krolokke, Janne Rothmar Herrmann
Women using reproductive technologies to extend the period they can procreate challenge nature and culture, and traverse the boundary between what is considered normal and abnormal. In other words, women inhabit the potentialities of reproductive change found in Margrit Schildrich’s figure of the monstrous. Haraway and Dumit’s implosion method is a useful vehicle for following women who are on the edge of reproductive age through legislation, the media, and the fertility clinic, revealing how maternal age is disciplined and (re)configured. While older women who conceived naturally are viewed as acceptable mothers, those who used technological assistance are perceived with uneasiness. The dichotomy of the natural and the unnatural is especially prevalent as an ordering principle in legislation, but it is (re)configured in media reports and clinical settings where a youthful appearance mental attitude and behaviour, can mitigate age. While the discussion about an age limit for parenthood is important, the nature-based ideas that are central to regulating women’s bodies but not men’s should be challenged. The way that moral boundaries emerge calls for legislation, media perceptions, and clinical practices to be adjusted to include new modes of ordering that are less repressive of women, their bodies, and their reproductive lives.
Tanya Stivers, Rose McCabe
We begin by considering the evolving nature of the physician-patient relationship. Research shows that physicians have retained significant authority as health professionals but not to the extent that they had in the golden age of doctoring. Instead, as patient centered care movements gained momentum, patients became empowered through policies and parallel consumer social movements. Patient-centered care advocates envisioned an active patient who would ask questions and voice preferences and concerns but would remain rational and thus make choices that remained in line with standard of care practices. Instead, we discuss research on patient communication with clinicians that has documented an unexpected form of patient participation: patients sometimes advocate for treatments that are not necessarily good for them and sometimes resist recommendations that are the current standard of care. We review the varied ways in which these engaged patients influence diagnoses and treatment/care outcomes. Finally, we introduce the eight papers that comprise this special section of Social Science and Medicine on dueling in the clinic.
Clara Bergen, Rose McCabe
People presenting to the emergency department with self-harm or thoughts of suicide undergo a psychosocial assessment involving recommendations for e.g. contact with other practitioners, charity helplines or coping strategies. In these assessments, patients frequently adopt a negative stance towards potential recommendations. Analysing 35 video-recorded liaison psychiatry psychosocial assessments from an emergency department in England (2018–2019), we ask how these practitioners transform this negative stance into acceptance. We show that practitioners use three steps to anticipate and address negative stance (1) asking questions about the patient’s experience/understanding that help the patient to articulate a negative stance (e.g., “what do you think about that”); (2) accepting or validating the reasons underlying the negative stance (e.g., “that’s a very real fear and thought to have”); and (3) showing the patient that their reasons were incorporated in the recommendation (e.g., “it’s telephone support if you’re a bit more uncomfortable with face to face”). These steps personalise the recommendation based on the patient’s specific experiences and understanding. When practitioners followed all three of these steps, the patient moved from a negative stance to acceptance in 84% of cases. When practitioners made a recommendation but did not follow all three steps, the patient moved from a negative stance to acceptance in only 14% of cases. It is not the case that each communication practice works on its own to promote patient acceptance, rather Steps 1 and 2 build on each other sequentially to develop and demonstrate shared understanding of the patient’s negative stance. In this way, acceptance and validation play an indispensable role in addressing a patient’s concerns about treatment.
Nan Christine Wang, Yuetong Liu
Antimicrobial Resistance (AMR) is one of the gravest global public health crises today. Over-prescription in clinical settings is a primary driver. Despite its magnitude and scale, the problem of antibiotic over-prescription in China has not been understood adequately nor addressed effectively. Based on a corpus of 183 video-recorded medical conversations in the Chinese pediatric setting, we show that patient caregivers frequently challenge the physician’s medical authority by resisting treatment recommendations, displaying a high level of entitlement to influence the treatment decision. As a result, even when the physicians do not recommend antibiotics based on their professional judgment, they prescribe in response to caregiver pressure. We argue that the relatively low level of medical authority is a significant contributor to the problem. Under this consumerist model of doctor-patient relationship, antibiotics are oriented to by the caregivers as a negotiable commodity and physicians are unable to fulfill their role as gatekeepers. Educational campaigns are needed to promote rational use of antibiotics among patients and caregivers, and serious efforts are called for to protect physicians’ professional authority in China.
Fiona A. Stevenson, Geraldine Leydon Hudson, Elizabeth Murray, Maureen Seguin, Rebecca Barnes
The internet provides access to a huge variety of information, including health information. There is, however, a dearth of evidence as to how, and to what ends, patients raise prior use of the internet during medical visits.
Analysis is based on the Harnessing Resources from the Internet study. Drawing on data from 281 video-recorded primary care consultations, we use conversation analysis (CA) to systematically inspect the data for instances in which patients reveal that they have accessed publicly available online resources regarding their illness, symptoms, or treatment concerns.
Patients invoke the internet to support three types of action: to (i) justify concerns about a serious illness; (ii) provide a warrant for treatment where they have been unable to find a solution; and (iii) advocate in relation to treatment.
Although invoking the internet risks potential encroachment into the doctor’s domain of authority, patients carefully design their turns when raising the internet so as to orientate to the final decision about treatment as residing firmly within the doctor’s domain of authority.
The work demonstrates how detailed interactional analysis can be used to illuminate the local work that patients and doctors engage in to manage the rise in availability of information from the internet.
Ana Cristina Ostermann
Unintended pregnancies constitute a serious public health concern in Brazil, representing up to 55% of all pregnancies, and are prevalent among women with low income and low educational backgrounds. Lack of assistance to women in their decision-making has hindered the adoption of more effective contraceptive models. Although clinical consultations constitute an important locus to assist women in decision-making and to facilitate access to subsidized methods, our current knowledge of how contraception is discussed and decisions are reached in actual consultations is limited. Just as scarce is our knowledge of how patients respond and resist contraception recommendations and how physicians counter or accommodate patients. Using a corpus of 103 audio-recorded medical visits and conversation analytic (CA) methods, this paper examines recommendation sequences in the under-investigated gynecological consultations in the Brazilian public healthcare system (SUS). The quantitative analysis reveals a strong orientation to physicians as having primary rights to govern the oversight of women’s bodies: 94% of the recommendations are delivered as pronouncements (e.g., “You’ll take X″), the most authoritative action type. Patients largely assume an agreeable and passive role (66%), leading to scarce negotiation and minimal involvement in decision-making. However, in a few cases (12%), all involving contraception, patients become overtly agentive, responding with active resistance. A qualitative analysis of that subset shows that despite women’s gaining some agency over their sexual bodies, that agency is still limited. Whereas physicians accommodate patient resistance on grounds of biomedically-related side-effects and incorrect assumptions about the women’s lives, they overlook patient resistance based on gendered struggles over contraceptive methods in the domestic sphere. By failing to consider women’s lack of agency in choosing whether to have sex or to use condoms, doctors show unawareness of significant consequences of the recommended method, which might include domestic dispute and violence and, paradoxically, ultimately misfire, leading to unwanted pregnancy.
Advance care planning is premised on concepts of individual autonomy and self-determination. The standardisation of this individualist approach to decision-making erases the diverse cultural sensibilities and vocabularies that shape trajectories of care. In attempting to redress this exclusion, this paper foregrounds previously overlooked vernaculars and practices for understanding how care for the aged and those approaching the end of life is understood and enacted in Australia’s culturally diverse society. Drawing on ethnographic interviews and participant-observation with ageing Chinese migrants and their families in Adelaide, South Australia, it examines the multiple enactments of ‘face’ in end-of-life care. In so doing, the paper extends Goffman’s theorisation of ‘face’, opening up the ‘front’ of the bounded individual to reveal how persons are mutually implicated in relational contexts. Attending to cultural contours of face and their intersections with filial piety, this paper unsettles the imperative of self-determination in advance care planning and reveals how intergenerational shifts from older to younger generations can reorient care at the end of life.
Rebecca E. Olson, Alexandra Smith, Phillip Good, Emily Neate, Cody Hughes
Within palliative care, clear and open communication about death is encouraged. Euphemisms are discouraged as threats to promoting clear understanding of the prognosis; to opening communication about what a good death means to individual patients and families; and to fostering collaborative planning aimed at achieving this ‘good death’. Principles of patient-centred and culturally competent care, however, which reflect trends of individualisation, plurality and multiculturalism that are characteristic of late modernity, encourage respect for and support of patients’ and families’ preferences. These may include wishes to avoid open communication, preferences for euphemisms, and definitions of a ‘good death’ that vary from the practitioner’s, and within families. The aim of this study was to examine how physicians navigate these competing priorities. Analysis is based on interviews with 23 doctors, ranging in experience from medical students through to senior palliative care specialists, and eight recorded observations of palliative care multidisciplinary team meetings with 52 clinicians collected in 2017 at two hospitals in one Australian metropolitan area. Findings show that synonyms familiar to clinicians are often used to communicate prognoses in multidisciplinary meetings. In communication with patients and families, doctors rely on emotional and cultural cues to decipher the preferred terminology and response. Drawing on a late modern re-imagination of emotion management, we conceptualise the work performed in this context as emotionally reflexive labour. These findings suggest that blanket protocols for direct communication overlook the complexity of end-of-life communication in an era where a ‘good death’ is understood to be culturally relative.
Annelieke Driessen, Erica Borgstrom, Simon Cohn
Over the last decade, policies in both the UK and many other countries have promoted the opportunity for patients at the end of life to be able to choose where to die. Central to this is the expectation that in most instances people would prefer to die at home, where they are more likely to feel most comfortable and less medicalised. In so doing, recording the preferred place of death and reducing the number of hospital deaths have become common measures of the overall quality of end of life care. We argue that as a consequence, what constitutes a desired or appropriate place is routinely defined in a very simple and static ‘geographical’ way, that is linked to conceptualising death as an unambiguous and discrete event that happens at a precise moment in time in a specific location.
In contrast, we draw on 18 months of ethnographic fieldwork with two inner-London palliative care teams to describe the continual work staff do to make places suitable and appropriate for the processes of dying, rather than for a singular event. In this way, instead of ‘place of death’ merely defined in geographic terms, the palliative care staff attend to the much more dynamic relation between a patient and their location as they approach the end of their life. Central to this is an emphasis on dying as an open-ended process, and correspondingly place as a social space that reflects, and interacts with, living persons. We propose the term ‘placing work’ to capture these ongoing efforts as a patient’s surroundings are continually altered and adjusted over time, and as a way to acknowledge this as a significant feature of the care given.
Jorge Luis Crespo Suarez & Raudelio Machin Saurez
The integration of mental health services into primary care is a globally acclaimed strategy to close the treatment gap for mental disorders, but it has also been criticised for encouraging the medicalisation of everyday life. In Chile, this strategy has gained support and spread quickly in the last decades, and today, all primary public care centres have incorporated a mental health service. However, although some reports highlight problems that have arisen with integrated primary care, the critical social analysis of its impact on services, teams and communities is scarce. This article aims to analyse how primary public mental healthcare services (PPMHSs) in Chile could be contributing to medicalise life. Health policies, reports, evidence from research on local public health issues and the author’s experience are examined to develop the arguments. It is suggested that issues with the universal health access and integrated primary public care policies and the institutionalised use of standard classifications of mental disorders support the survival of a reductionist biomedical disease model and a trend to psychopathologise life. We conclude that these factors underpin the medicalisation of everyday life in primary public mental healthcare services in Chile. Critical engagement with daily practice is necessary to prevent PPMHSs from disempowering people and communities by providing them with medicalised solutions, instead of generating agency in their everyday problem-solving behaviours.
Susan McPherson & Jeppe Oute
The principle of family and carer involvement is scattered throughout much recent mental health policy. Inspired by Bacchi’s ‘what’s the problem represented to be’ approach to policy analysis, we consider guidelines relating to depression in the UK and Denmark, two examples of European health systems which have undergone reforms based on neoliberal principles effectuating austerity politics. The analysis shows how carer involvement recommendations in depression guidelines reflect a responsibilisation agenda rather than a sound evidence and that the policies represent the problem to be a potentially risky patient along with consequential bureaucratic risks of involving the caregiver. In order to put the political agenda into perspective, we outline qualitative research on family life with depression which we argue could have informed ‘evidence-based’ guidelines. This research emphasises the complexity of family life with depression in which the origins of depression, maintaining factors, family context, pathways to treatment, treatment models and other routes to recovery all interact in a way that means the requirement for ‘carer involvement’ as simplified in current guidelines is naïve at best. We consider the gap between evidence and policy and note that carer involvement recommendations reflect a failure to understand depression within a context of complex dynamic family relationships.
Health researchers are encouraged to involve patients and the public in each stage of the research process. Patient and public involvement (PPI) seeks to redress an apparent ‘democratic deficit’ in the production of health research. While many claims have been made of the benefits of involving and increasingly co-producing research with patient and public members, it has proven difficult to measure its impact. To inform understanding of why involvement initiatives ‘fail’ or ‘succeed’, this paper focuses on the relational dynamics of PPI and co-production. Through an examination of the discourse of relationships in UK health research guidance it is argued that while emphasis is placed on ‘sharing power’, there persists limited understanding of the constraints of institutional structures and how power asymmetries come to be performed, reinforced or resisted in PPI and co-production settings. To reshape and rethink existing practices I examine the theories that underlie PPI and co-production referring to Habermas’ (The theory of communicative action, Polity Press, Cambridge, 1987) and Mouffe’s (Social Research 66:745–758, 1999; Politica Comun, https://doi.org/10.3998/pc.12322227.0009.011, 2016) contrasting perspectives on the role of public participation in democratic designs. I suggest that power differentials cannot simply be eradicated or bracketed by guidelines and rhetoric, and that PPI and co-production must be understood as profoundly relational and interactional processes.
Maev Conneely, Paul Higgs & Joanna Moncrieff
Depression is regularly declared to be equivalent to a bodily illness, yet critics have long contested this ‘medical’ view of mental disorders. Following the ideas of Szasz and Foucault, we describe an alternative ‘moral’ view of depression, which emphasises the agency of the individual and presents depression as a potentially problematic but meaningful response that can be regarded as an aspect of character. We use popular internet blogs by people with depression to explore these contrasting conceptions, which can also be found in other research and information on depression. In blogs, the medical view is used to challenge what bloggers perceive as a persistently influential moral view, by deflecting criticism and responsibility and disowning unwanted aspects of the self. At the same time, bloggers make positive use of the moral concept of depression when discussing recovery. The moral view enables people to take active steps to address their difficulties and to integrate the experience of depression into their understanding of themselves in a challenging yet rewarding process of personal development. We suggest that the moral view of depression represents an enduring aspect of our understanding of ourselves, which the medical view has been superimposed onto, but has not managed to suppress.
M. Beatrice Fazi
This article addresses computational procedures that are no longer constrained by human modes of representation and considers how these procedures could be philosophically understood in terms of ‘algorithmic thought’. Research in deep learning is its case study. This artificial intelligence (AI) technique operates in computational ways that are often opaque. Such a black-box character demands rethinking the abstractive operations of deep learning. The article does so by entering debates about explainability in AI and assessing how technoscience and technoculture tackle the possibility to ‘re-present’ the algorithmic procedures of feature extraction and feature learning to the human mind. The article thus mobilises the notion of incommensurability (originally developed in the philosophy of science) to address explainability as a communicational and representational issue, which challenges phenomenological and existential modes of comparison between human and algorithmic ‘thinking’ operations.
Samuel Law, Lisa Andermann, Wendy Chow, Xing Wei Luo, Xiang Wang
There is a relative dearth of qualitative studies on the actual experiences of families caring for members suffering from serious mental illness, and even less is known about disadvantaged ethnic minority immigrant families. This explorative qualitative study examines the burden experienced by 15 family members of Chinese immigrant background in Toronto, Canada. Six common themes emerged from the study: 1) significant worries about not being able to take care of ill members in the future; 2) on-going strain and changed family life; 3) pervasive social stigma, discrimination and lack of resources; 4) general appreciation of Canadian health and welfare systems and opportunities; 5) cultural factors and beliefs uniquely shape families’ support and caring commitment; and 6) families find various ways to cope and help themselves. Opportunities for improved care delivery based on these understandings are discussed.
Rossio Motta-Ochoa, Paola Bresba, Jason Da Silva Castanheira, Chelsey Lai Kwan, Shaindl Shaffer, Omega Julien, Meghan William, Stefanie Blain-Moraes
Individuals with dementia and their carers often experience a rupture of relationships that co-occurs with declining functional and cognitive abilities, leading to their increased social exclusion in both intimate relationships and community settings. While initiatives have been developed to support meaningful interaction and participation in society, they have broadly ignored the significance of how cultural factors influence experiences of inclusion/exclusion of these individuals. An ethnographic study was conducted by an interdisciplinary research team between April 2018 and January 2019 to explore the intersections of culture and social inclusion/exclusion in a culturally diverse group of persons with dementia, caregivers and staff members of a non-profit organization located in a multicultural neighborhood of a bilingual Canadian city. The participants’ culture was inextricably linked to their experiences in three overarching themes of social inclusion/exclusion: transformation of the person with dementia and the caregiver; participation in social networks and meaningful relations; and styles of care provision in health and social services. Cultural mandates that prescribe practices of intergenerational care shape the way certain caregivers perceive their role and mitigated experiences of exclusion. Culturally specific notions and views associated with dementia prevalent in certain communities increased experiences of inclusion or exclusion. Engagement with the cultural elements of individuals with dementia was shown to be an effective and underexplored tool for fostering inclusion. The results of this study highlight the value of the ethnographic methods for incorporating the perspective of persons with dementia in research.