Brenda Bogaert

The rise of ageist beliefs and practices negatively affects the delivery of quality care for older persons. When ageism is practiced by healthcare providers and institutions, it not only limits patient participation but also decreases healthcare outcomes and further isolates an already isolated population. In this contribution, we consider how the development and practice of epistemic humility may improve care for this group. By epistemic humility, we refer to the virtue of developing both an inward perspective (an awareness of the limits of one’s epistemic capacities) and an outward perspective (a disposition to seek alternative resources to overcome one’s shortcomings). We consider what kind of resources and opportunities future and current healthcare providers may need to develop and practice epistemic humility toward their older patients. Among proposals to be discussed include: (1) at the level of training, teaching students to value humility and develop critical thinking skills on intergenerational perspectives; (2) integrating older patient advocates in care and training to enable healthcare professionals to understand a greater diversity of patient perspectives; (3) developing patient empowerment programs adapted to the desires and capabilities of older patients, in particular through phenomenological methods.

Discrimination in healthcare is a pervasive issue that affects patients, healthcare providers, and quality of care. This article mobilizes the concept of affective injustice—a wrong done to someone as an affective being—to better understand the harms experienced by healthcare providers facing discrimination from both patients and colleagues. When patients discriminate, the duty to care often overrides the healthcare provider's ability to express justified emotions, particularly anger. In contrast, inter‐colleague discrimination frequently takes the form of microaggressions, which are difficult to challenge. Because of these difficulties, healthcare providers often feel pressured to engage in emotional regulation strategies to manage their own affects. While emotional regulation strategies may be helpful in the short‐term, we show that they do not address the root causes of discrimination and may exacerbate healthcare providers' distress, and impact care quality and staff retention. To better deal with these problems, the article will propose affective resources, opportunities, and freedoms that can be put into place to support healthcare providers and to make the workplace a more just space for all.

The aim of the study was to develop a new conceptual framework of empowerment based upon the perspective of patients with refractory epilepsy at the medical-social center of La Teppe (France). A qualitative research methodology was used, which consisted of focused ethnography and in-depth interviews. The 19 patients interviewed came from three hospital services and were in the age range of 20-60. Ten interviews were also conducted with healthcare providers, which included neurologists, psychiatrists , nurses, and social educators. Results were analyzed via an intuitive process of thematic analysis. The researcher also constructed narrative cases of the patient interview to better understand patient responses in context. The results show that patients understood empowerment as the ability to develop and take advantage of opportunities in their overall lives. This included searching to be healthy by reducing their seizures, developing their practical reason in order to be able to make more autonomous life choices, and living with and toward others in positive social relationships. The patient's perspective on empowerment encompasses but also goes beyond their medical care. We therefore propose a novel conceptual framework for empowerment as the patient's capabilities to develop and make their life choices, with help as needed from their support network. In order to help patients toward empowerment, clinical care can include discussions and dedicate resources that help patients work toward their overall life projects. Several methodologies, including the use of a personalized project and therapeutic patient education, are elaborated to give ideas for empowerment programming in epilepsy care.

Le concept d’injustice épistémique (epistemic injustice) a été introduit par la philosophe Miranda Fricker (2007) pour signifier un type d’inégalité qui se manifeste dans l’accès, la reconnaissance, et la production des savoirs. Appliqué et développé dans de nombreux domaines de l’épistémologie sociale, y compris dans le domaine de la santé, le concept peut contribuer à la réflexion sur la décision partagée. Dans la relation médecin-patient, ce concept a permis de montrer le préjudice qu’un patient subit dans certaines situations et qui l’empêche de participer pleinement en tant qu’acteur dans une consultation. Nous commençons cet article avec un résumé du sens et de l’usage du concept et de ses applications dans le soin. Nous discutons ensuite des limites de l’utilisation dudit concept, sans pour autant nier son pouvoir d’innovation. Enfin, nous présentons plusieurs suggestions sur la manière dont les soignants et leurs institutions peuvent évoluer vers des formes améliorées de justice épistémique, notamment en pratiquant l’humilité épistémique, le travail interdisciplinaire et une représentation plus équitable des patients dans la recherche et dans les politiques publiques.

The intangible value of emotions is often neglected in healthcare evaluations; however, it forms an important part of the hospital experience that needs to be taken into consideration to move toward person-centered care. This article conceptualizes how space and architecture may influence patient, family, and healthcare provider emotions. Building upon Gaston Bachelard’s Poetics of Space, theories on emotional design and architecture, as well as research in environmental design, we suggest several ways to value emotions in hospital design and architecture. The first theme explores several hospital spaces (the waiting room, the hospital room, the treatment room) using Bachelard’s phenomenology in order to show how to facilitate emotional security by catering to the individual needs of the user. The second discusses the overall hospital room environment, notably the influence of light, color, and sound on the patient’s emotional experience. The third explores architectural theorist Giuliana Bruno’s theory of e(motion) to explore the hospital space as vissuto, a space of lived experiences, that invites us to rethink the design and architecture of hospital spaces to allow for patient participation. The article also gives suggestions of qualitative, person-centered methodologies that can be used to move forward this debate.

This scoping review mapped the main themes in existing expert guidelines for cancer care issued during the COVID-19 crisis from the period of March 2020-August 2021. The guidelines published during the research period principally relate to the first two waves in Europe and until the beginning of the vaccination campaign. They elaborated recommendations for cancer care reorganisation, in particular triage and quality of care issues. The article highlights the ethical, epistemological, as well as practical reasons that guidelines were not always followed to provide some lessons learned for future crises to enable better guideline development processes. We also elaborate early evidence on the impact of triage decisions and different perspectives on cancer care reorganisation from ethics and social science literature.

This article focuses on the experiences of social care workers during the first wave of the Covid pandemic. The method involved analyzing diaries kept by 65 professionals in 8 French regions during the first lockdown in France in spring 2020. As a form of non-binding, narrative expression, keeping diaries breaks with traditional models of reporting common in social care structures and allowed professionals to reflect on the experience as it was lived. In the diaries, professionals explored how the crisis disrupted and challenged their personal and professional values but also allowed innovation in care practices for vulnerable populations that will continue beyond the pandemic period. Five care values were put to forefront by professionals: 1) spontaneity/flexibility; 2) respect for persons; 3) team reflexivity; 4) innovation; 5) solidarity. Mobilizing philosopher Paul Ricoeur’s ideas on recognition, Payet and Laforgue’s analysis of weak actors, as well as research on moral distress, we discuss how these values were tested during the crisis and what effect they had on professionals’ and users’ vulnerabilities. We will also elaborate the interest of keeping account of social care work through narrative methods.

Les soignants expriment régulièrement leur colère dans l’espace public. Ils dénoncent le démantèlement de l’hôpital public selon les principes du New Public Management, qui conduit à gérer l’hôpital comme une entreprise. La crise du Covid-19 a aggravé ce ressentiment, avec la surcharge de travail, l’augmentation du stress et des cas de burn-out. Comment comprendre cette colère et son importance pour l’avenir de nos institutions ? Afin d’en proposer une analyse nuancée, nous commencerons par élaborer une compréhension historique et contemporaine de cette émotion. Nous introduirons ensuite le concept « d’injustice affective » proposé par la philosophe Amia Srinivasan pour révéler la valeur éthique et épistémique de la colère pour les soignants. Enfin, nous étudierons les difficultés qu’on rencontre pour œuvrer en faveur de la justice affective dans ces débats à travers l’exemple des médias.

« Philosophie de terrain » : un nombre croissant de philosophes se reconnaissent dans cette expression et la revendiquent pour décrire leur démarche. Sous diverses formes, on mobilise et se réapproprie ce que les sciences humaines et sociales ont thématisé comme des « enquêtes de terrain ». Le collectif PhilosoField publie un Manifeste pour une philosophie de terrain, porteur d’un témoignage comme d’un engagement : témoignage de l’ouverture et de la créativité de cette frange de la philosophie contemporaine ; engagement en faveur des dynamiques collectives qui questionnent et renouvellent la manière dont les savoirs sont produits. Ce n’est donc pas un manifeste « coup de poing », mais plutôt un élargissement des possibles, qui soutient certaines prises de position alternatives voire subversives, et délimite ainsi un espace d’émancipation et d’inventivité.

In the age of patient participation, ethics are more important than ever to help guide clinicians in situations of uncertainty. Principles of Biomedical Ethics by James F. Childress and Thomas L. Beauchamp remains the most important reference in medical ethics. In their work, they conceptualize four principles designed to help guide clinicians in decision making, notably beneficence, non-maleficence, autonomy, and justice. While using ethical principles dates back to at least Hippocrates, the introduction by Beauchamp and Childress of the principles of autonomy and justice have helped to deal with new challenges. This contribution will discuss how the principles can help elucidate issues of patient participation in epilepsy care and research using two case studies.

Préconisée au nom de la démocratie sanitaire, l’implication des patients partenaires dans les projets de recherche est considérée de plus en plus comme étant une bonne pratique, voire relevant d’une obligation éthique. Toutefois, pour le moment, les patients partenaires continuent d’occuper une place incertaine et on accuse souvent leur participation d’être seulement symbolique. Dans cette contribution, nous chercherons à élaborer les enjeux éthiques et épistémologiques de cette collaboration et les conditions qu’il faut mettre en œuvre pour parvenir à une association fructueuse. Nous nous attacherons en particulier à trois points. Nous examinerons d’abord l’accusation selon laquelle l’implication d’un patient dans le processus de recherche peut porter atteinte à la liberté académique, à la fois en raison d’un conflit d’interprétation entre les patients et les scientifiques, mais aussi en raison des liens et des conflits d’intérêts éventuels du patient. Nous élaborerons ensuite le problème de la représentativité, à savoir si des patients individuels peuvent être représentatifs d’une plus large population de patients et ce que cela peut impliquer pour la qualité d’une étude. Dans ce débat, nous nous demanderons si la rémunération des patients partenaires peut atténuer ce problème. Enfin, nous analyserons les situations dans lesquelles une participation peut être préjudiciable pour la personne impliquée et si tel est le cas, ce que nous pouvons faire pour y remédier.

This article will elaborate how oncology care and research was adapted during the COVID pandemic in the Metropole of Lyon (France), including the lasting innovations that came out of the crisis. The research method involved 22 semi-structured qualitative interviews of healthcare professionals, managers, and researchers in the Lyon, France region coming from both public and private academic hospitals. The interviews took place from February 2021-December 2022 in order to assess the long-term adaptations and innovations in cancer care organization in the post-COVID era. The main results show adaptations and innovations in 1) new processes and resources to facilitate disciplinary and interdisciplinary work; 2) harmonization and streamlining of patient journeys. In the discussion section, we will mobilize the capabilities approach, an interdisciplinary social sciences approach that focuses on the capabilities of persons to be and to do, to elaborate the conditions by which local actors were able to be agile, to adapt and to innovate in spite of the healthcare emergency and in coherence with their professional and personal values.

Cette contribution développera les raisons pour lesquelles les théories non idéales peuvent être particulièrement appropriées à la pratique de la philosophie de terrain. Alors que les théories idéales – dont la plus connue est celle de John Rawls – ont dominé de nombreux débats en philosophie morale et politique, les philosophes défendent de plus en plus l’idée qu’il faut théoriser à partir du monde réel. Compte tenu de ces débats, il est surprenant que le potentiel des théories non idéales et de leurs applications pour la philosophie de terrain n’ait pas (encore) été développé. Dans cet article, nous ferons usage de l’approche « par l’échec » de la philosophe anglaise Miranda Fricker, à partir de sa théorie de l’injustice épistémique pour discuter de ce que les approches non-idéales peuvent apporter. Tout d’abord, nous verrons comment les théories non idéales peuvent aider les philosophes à développer des orientations méthodologiques à mettre en œuvre sur le terrain. Ensuite, nous explorerons comment celles-ci peuvent faciliter les échanges et les projets interdisciplinaires. Enfin, nous discuterons de l’engagement des philosophes et des raisons pour lesquelles les théories non idéales peuvent être particulièrement adaptées à cette entreprise.

Puisque la médecine est forcée de comprendre simultanément comme soin, gestion et science appliquée, n’est-ce pas dans ces trois dimensions que le numérique déploie son impact ? Du côté de la tension entre science et art d’une médecine entendue comme science appliquée, que devient la nature et l’exercice de l’intelligence soignante et du jugement médical comme acte exégétique à l’heure de l’intelligence artificielle ? Du côté du soin, lequel engage nécessairement des corps en présence, des affects et des mots, comment la médiatisation de la relation par la constitution du « milieu de soin » en « un milieu « numérique » (de la télémédecine à la robotique) métamorphose-t-elle ou hybride-t-elle la présence par corps dans la prise en soin ? Enfin, du côté de la gestion de la médecine comme industrie de santé, comment la place des logiciels et de la rationalité informatique impacte-t-elle le travail de soin dans sa dimension de collaboration et de coopération ? Avec des auteurs et autrices issus de la philosophie, de la sociologie, du droit et de la gestion, nous explorerons ce que le numérique fait au soin et comment la clinique est repensée à la lumière de l’intelligence artificielle et de la robotique.

This article elaborates research participant perspectives on the communication of individual research results from genomic analyses. While most analyses focus on how to communicate results from the perspectives of clinicians or researchers, there is insufficient data on user perspectives and how this information may be used, valued, and interpreted by patients and their families. The concept of personal utility, which considers factors related to quality of life, including on how information may impact the person’s future decisions, has been shown to be particularly relevant to understand research participant perspectives and to move beyond clinical and analytic utility factors such as mortality and morbidity. This article draws from qualitative research of research participants awaiting genomic results in the case of sudden cardiac death. Our results show perspectives of personal utility in communication of genomic results, including cognitive, behavioral, and affective outcomes. Cognitive outcomes include gain of information, improved knowledge of etiology and inheritance characteristics, and curiosity for what might be found. Behavioral outcomes include being able to plan life decisions, while affective outcomes include various coping strategies used. We will also discuss the value of knowing negative results and incidental findings from the research participant’s perspective. This contribution gives suggestions on best practices to guide genome analysis returns, including incorporating participant wishes on individualized communication at the consent stage; developing relational autonomy approaches; and engaging them throughout the research trajectory.

Decentralised clinical trials raise ethical questions regarding informed consent because the consent process often takes place remotely. This article explores the challenges (such as fewer in-person interactions) and opportunities (including new possibilities for exercising autonomy and engaging a more diverse research population) that a remote informed consent process raises for research participants. In addition, the article contains several approaches for mitigating the ethical problems that obtaining informed consent remotely raises in decentralised clinical trials, including moving toward a more dynamic informed consent process and using teleconference technologies to give regular feedback to participants, which may help increase transparency and foster trust between research participants and the research team.

Opacity – or the lack of transparency - impacts patients’ ability to participate in and contribute to decision-making. This contribution examines how opacity affects patient engagement in the context of oral potentially malignant disorders. The discussion focuses on three key areas: the effects of unclear disease classifications on patient perceptions of their health; the ways in which ambiguous healthcare pathways create barriers for both patients and providers; and the broader impact of opacity on patient autonomy. The conclusion explores strategies to reduce or mitigate these challenges, including fostering epistemic networks for patients and healthcare providers and embracing the value of humility in care work.

A growing tendency in medicine is the use of clinical practice guidelines to harmonize clinical practice. Researchers have noted the tension between the clinician’s individual autonomy and the constraints imposed by these guidelines. However, research on their use and appropriation by local actors deserves to be developed to better understand what is happening on the ground. The aim of our research was to better understand how they are used and appropriated in oncology. Even though the research focuses on the COVID crisis, it explores factors important to guideline use both during epidemics and in normal practice. The methodology consisted of qualitative, semi-structured interviews with clinicians and management in oncology in two hospitals in Lyon, France during the COVID pandemic. Our results indicate the ethical and epistemological reasons that guidelines were followed (or not) during the pandemic and the active role of clinicians in their formulation and implementation. We will discuss the question of trust in a guideline, how a flexible use of guidelines may safeguard institutional agility, and for what reasons a deviation may be justified in an ethics of care. The research contributes to better understandings of the dynamic role that local actors play in guideline development, appropriation, and use. It shows that while guidelines remain a standard from which their practices are to be compared (and justified), clinicians use them in a flexible manner and are active in evaluating and deciding how they will be implemented in their structures.

La population des patients de gériatrie présente des enjeux de prise en charge et d’éthique spécifiques qui ne sauraient se résumer aux défis liés aux troubles neurocognitifs. Dans cet article, nous nous efforçons d’apprécier si les patients de gériatrie sont dans leur ensemble susceptibles de subir des injustices épistémiques d’ordre herméneutique. Il s’agit d’injustices liées à un déficit conceptuel limitant la capacité d’expression du vécu propre d’un groupe social dans une société donnée, perpétué par des rapports de pouvoir défavorables à un groupe vivant une expérience située. En relisant les travaux de Fricker, Mason, Kidd et Carel, nous traversons les trois principaux types d’injustices épistémiques herméneutiques et argumentons que les patients de gériatrie sont particulièrement vulnérables à ce type de préjudices dans le milieu médical. Nous évoquons en particulier l’absence de partage épistémique social concernant le très grand âge, l’existence de ressources épistémiques non dominantes chez ces patients ainsi que plusieurs formes d’isolement épistémique que subissent les plus âgés. Nous évoquons quelques pistes pour s’orienter vers une médecine plus juste envers les patients, et plus épanouissante pour les professionnels.

This book explores the ambiguous role of affects in healthcare work and medical education. At the same time that healthcare professionals are often encouraged to suppress or downplay their affects in order to maintain a sense of professionalism, those of patients are frequently misunderstood or unheard - both within clinical settings and beyond. We argue that these are examples of affective injustice, instances in which emotional expression is dismissed as unprofessional, unproductive, or inappropriate in healthcare. We show that the suppression of affects is not only unrealistic but also potentially harmful, and how it can lead to burnout and dissatisfaction among healthcare providers as well as negatively affect care quality, in particular for marginalized groups. The ambition of the book is therefore to bring this controversial issue to the forefront and to demonstrate the value of affects in healthcare and medical education, as well as to offer several methodologies for greater affective expression and recognition in healthcare institutions. The first part of the book lays the theoretical groundwork, examining the relevance of the concept of affective injustice for healthcare, and the problems that affective injustice creates for care actors and for care quality. The second part offers some practical methodologies to move toward affective justice for patients and healthcare providers. Proposals include narrative methods, spiritual care, emotionally responsive hospital design and architecture, the possibilities and limits offered by patient research partners, and pedagogies for medical education. The book will end by showing how to take the framework forward, in particular through empirical bioethics research. This book will be of interest to scholars and educators in medical ethics, interdisciplinary researchers in the medical humanities, as well as patients, families, and healthcare providers interested in the role of affects in healthcare.

This article focuses on the experiences of social care workers during the first wave of the Covid pandemic. The method involved analyzing diaries kept by 65 professionals in 8 French regions during the first lockdown in France in the spring of 2020. As a form of non-binding, narrative expression, keeping diaries breaks with traditional models of reporting common in social care structures and allowed professionals to reflect on the experience as it was lived. In the diaries, professionals explored how the crisis disrupted and challenged their personal and professional values but also allowed innovation in care practices for vulnerable populations that will continue beyond the pandemic period. Five care values were put to forefront by professionals: (1) spontaneity/flexibility; (2) respect for persons; (3) team reflexivity; (4) innovation; (5) solidarity. Mobilizing philosopher Paul Ricoeur’s ideas on recognition, Payet and Laforgue’s analysis of weak actors, as well as research on moral distress, we discuss how these values were tested during the crisis and what effect they had on professionals’ and users’ vulnerabilities. We will also elaborate the interest of keeping account of social care work through narrative methods.

The dominant discourse in chronic disease management centres on the ideal of person-centred healthcare, with an empowered patient taking an active role in decision-making with their healthcare provider. Despite these encouraging developments toward healthcare democracy, many person-centred conceptions of healthcare and programming continue to focus on the healthcare institution’s perspective and priorities. In these debates, the patient’s voice has largely been absent. This article takes the example of patient empowerment to show how the concept has been influenced by a variety of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. The framework of epistemic injustice is proposed to unravel the complexity of these omissions. The concept can be defined as a wrong done to someone specifically in their capacity as a knower. It occurs when a person is ignored or not believed due to a prejudice of some kind. It has been applied to healthcare in order to better understand barriers for patient participation and will be used to better understand the problems with current empowerment definitions and implementation strategies. The article will end by proposing some methodologies to facilitate patient-developed concepts of empowerment.

Ensuring patient participation in healthcare decision making remains a difficult task. Factors such as a lack of time in the consultation, medical objectivation, or the difficulties of translating individual patient experience into the treatment plan have been shown to limit patient contributions. Little research attention has focused however on how emotions experienced by both the patient and the healthcare provider may affect the ability of the patient to participate. In this research, patient’s and healthcare provider’s emotions were identified and analysed. The research method showed fear as a prominent emotion experienced. This included patient’s fears both inside and outside the consultation, as well as the healthcare provider’s fears in their professional practice. Using Martha Nussbaum’s cognitive-evaluative theory of emotions as an additional means of analysis, the research looked at what this emotion could show about the importance of the object of this fear to the person’s eudaimonia (flourishing). At the end of the article, several solutions were proposed to help mitigate this fear to keep it from becoming a destructive force in the healthcare provider—patient relationship.

The French medical context is characterized by institutionalization of the ethical reflection in health care facilities and an important disparity between spaces of ethical reflection. In theory, the healthcare professional may mobilise an arsenal of resources to help him in his ethical reflection. But what happens in practice? We conducted semi-structured interviews with 22 health-care professionals who did and did not have recourse to clinical ethical committees. We also implemented two focus groups with 18 professionals involved in various spaces of ethical reflection in order to let them debate about a better way to organize ethical reflection in their institutional contexts. The qualitative analysis allows to us to underline the coexistence of different conceptions of ethics among health care professionals. We also observed that the participants in our study shared the experience of ethically problematic situations as roadblocks in the process of communication and decision-making. We therefore report the factors which favour or inhibit the ethical course leading to the resolution or at the very least soothing of the situation at hand. Finally, we discuss methodological issues and underline the fact that while the patient is at the heart of the professional’s ethical preoccupations, this does not imply that they are actors in decisions that concern them.