Death with (In)dignity: Ageing, Disability, and Gender of Caring in Michael Haneke’s Amour

Writers have long explored illness and care as key themes in a wide range of work across a variety of literary genres. In the second half of the 20th century, literature and medicine emerged as a subfield of literary study as well as a component of medical education. In the American context, since the 1970s, research and teaching methods associated with the subfield of literature and medicine have become increasingly institutionalized in universities and medical schools. As with many emergent fields, there has been much debate around the name of the field and its primary objects of study and methods of analysis. Interdisciplinary scholars have expanded the field from a narrow focus on literature to a broader interest in the multiplicity of discourses, texts, genres, and forms—including verbal, visual, digital, and multimodal forms of creative expression and pedagogy. As a response to this expansion beyond literature, several alternatives to “literature and medicine” have been proposed and institutionalized as part of the process of field formation. Around 2000, “narrative medicine” emerged as a clinical practice that emphasizes the role of stories in medical encounters and seeks to teach health practitioners narrative competence as a form of care. Other scholars have debated whether “medical humanities” or “health humanities” best captures the parameters and investments of the field, with health humanities offered as a more inclusive name indicating the importance of spaces, practices, and practitioners beyond the institution of medicine. Some scholars have proposed “health studies” or “critical health studies” as encouraging the cross-fertilization of theories and methods from the humanities and social sciences (including medical sociology, history of medicine, philosophy, and literary studies), as well as from the interdisciplinary fields of women’s, gender, and sexuality studies, science studies, critical race studies, and disability studies, into medical and health thought and practice. Scholars calling for a more critical medical humanities or health studies argue for the importance of structural analysis and an examination of how power operates in medicine and health care. Many notable developments—including the turns to narrative, to comics, and to structural analysis—have had global impacts, especially in light of the ongoing Covid-19 pandemic. The experience of illness and its diagnosis and treatment connects the local and phenomenological—the embodied individual in the world and in relation to others (loved ones, caretakers, health practitioners, health advocates, and activists)—with national and transnational systems and structures, including health care policies and delivery services, basic and applied medical research and development, and poverty, racism, war, climate change, and other environmental factors contributing to the increasing precarity of vulnerable people and health disparities between populations.

This issue of Medical Humanities signals a turning point for an area of scholarship that is made up of several ‘contested and fragmented fields’ (p. 17)1 and has been criticised...

Acknowledgements. The Theme. Editors' Introduction. Illness, Life, the Human Condition A-T. Tymieniecka, E. Agazzi. Topical Introduction. Section I: Interpreting Illness and Medicine in the Context of Human Life: Experience vs. Objectivity. Illness as Lived Experience and as the Object of Medicine E. Agazzi. The Construction of Illness: A Context Problem C.T. Viesca. Defining Disease: Much ado About Nothing? J. Worrall, J. Worrall. Critique of Freud's Notion of Mental Illness A. Grunbaum. Cancer from the Medical and Existential Point of View M.V. Fiorentino. The Experience of Illness and the Meaning of Death M. Reichlin. Section II: New Challenges to the Understanding of Medicine: The Ethical Parameters. Towards a New 'Medical Humanism'. Application or Interpretation? The Role of Clinical Bioethics Between Moral Principles and Concrete Situations P. Cattorini. Medicine as a Practice and the Ethics of Illness R. Mordacci. Sense or Nonsense of Illness in Ethics of the Body P. Kemp. The Loss of the Sense of Illness: Euthanasia and the Right to Die R. Barcaro. Is it Possible to Give Sense to Illness J. Ladriere. Towards a New Approach to Medical Humanism L. Cassiers. Section III: The Life-Transcending Parameters in the Interpretation of Suffering, Death, and Human Existence: Buddhism, Judaism, Christianity. The Meaning of Suffering in Buddhism and Christianity H. Barreau. The Christian Interpretation of Suffering W. Pannenberg. La maladie dans la tradition juive. Orthodoxie et orthopraxie M.R. Macina. La souffrance de Job J.-M. Van Cangh. La sense de la maladie: Une perspective spirituelle chretienne E. Bianchi.La signification des miracles de Jesus J. Dore. Index of Names.

Regressing or progressing: what next for the doctor–patient relationship?

This commentary reflects the professional life story of a respected editor, poet, and champion of medical humanities, Johanna Shapiro. A psychologist by training, Johanna's work in medical humanities is well known and respected by health professionals in multiple venues. It is within family medicine that Johanna found her professional home. Her work has focused on the value of storytelling as a vehicle of healing, helping health professionals at all levels of training better understand their patients' experiences of illness and healing. The understanding helps patients more deeply connect to their illness and wellness. This commentary offers a tribute to Johanna's professional life and her contributions to family and narrative medicine. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

This paper aims to provide an initial response to Angela Woods's endeavour to ‘(re)ignite critical debates around this topic’ in her recent essay ‘The limits of narrative: provocations for the...

That wounds might speak

This resource documents the longitudinal clinical experience (LCE) introduced at the Icahn School of Medicine. This longitudinal program allows the students to further understand the experience of illness from the patients' perspective, learn from the clinician's approach in caring for patients with chronic illnesses, and identify methods to navigate the healthcare system in caring for chronically ill patients. The LCE program partners a patient cared for by an Icahn School of Medicine faculty member with two first-year medical students. The students establish a long-term relationship with the patient and the physician over the length of the course. Students observe first-hand challenges faced by patients living with chronic illnesses, how their chronic medical conditions impact their quality of life, and the coping mechanisms they have developed to live with the challenges their chronic illnesses pose. During their time with the patient, students reflect on the patient's experience through a series of written assignments related to the patient's life history, medication management and reconciliation, and their own reflection. They also can select from a list of additional reflection assignments as they relate to the patient. Topics for these additional reflections include: behavior modification, health insurance, health literacy, advance care planning, home environment assessment, nutrition assessment, and social determinants of health. When asked to reflect on this experience, some students disclosed a nonexistent, minimal, or unclear relationship mainly due to limited contact with care team and unfamiliarity of patients' needs. However, many students had positive encounters and established meaningful relationships with their LCE patient and felt their patient was trustworthy, respectful and welcoming.

Literature helps: listening to the narrative of medicine

This article argues that Zola's late novel Fécondité, while on the surface a transparently didactic roman à thèse articulating populationist concerns, is in fact at the same time a roman de mœurs implicated genealogically in a broader range of issues than pro-natalist ethics and various behavioural and therapeutic bêtes noires, containing identifiable traces of other contemporary pathological concerns, contingently marshalled for pro-natalist ends. Exploiting the terminological flexibility of what Peter Cryle and Alison Moore have referred to as a long-established ‘constellation of themes’ constituted by ‘impotence, frigidity and sterility’, Fécondité participates in the fin-de-siècle production of a key sexological concept. It does so through relentless deployment of the malleable motif of female sexual coldness – a signifier of pathological conditions named in contemporary medical and pseudo-medical literature as ‘frigidité’, ‘froideur’, and so on – and its polyvalent application to distinct pathologies manifesting in a variety of its female characters, in particular inabilities to desire, to conceive, and, significantly, to climax. Zola's novel appears at a moment where women's sexual pleasure was becoming normalised, to the extent that its absence now counted as a pathological disorder; Fécondité deploys tropes of coldness – consequential upon anti-reproductive practices – to suggest that it is attempted disruption of the natural reproductive order that ensures such disordered absence. Ultimately, while Fécondité is readable as didactic expression of a ‘humanitarian’ natalist ethics and representation of doctor-patient encounters, treatment, experience of illness and other ‘medical humanities’ concerns, it is however important not to overlook this representation's discursive contingencies, particularly the coalescence of sexological and populationist concerns at a moment when both were of considerable significance. Fécondité in this sense straddles two major fin-de-siècle discursive economies, offering an ideal object for a critical medical humanities valuing the pathological as well as the pathographical.

ObjectivesTo examine whether illness or healthcare experiences have a more significant influence on living well, and which factors in these experiences have the most influence.MethodsInformation collected included demographic data, illness and healthcare experience, and the LTCQ to measure living well. Data was collected via online survey platform Qualtrics. Two separate 2-stage hierarchical multiple regressions were run to investigate how much variance in living well with long-term conditions is accounted for by established and exploratory illness and healthcare experience factors.Results70 participants met the inclusion criteria of the study, with 54 included in the analysis. Results showed that illness experience had a significant influence on living well while healthcare experience did not. The factors of illness intrusiveness in illness experience and patient assessment of chronic illness care in healthcare experience significantly impacted living well.Discussion: This study examines the influences of illness and healthcare experiences on the ability to live well with LTCs. Future research could focus on specific LTCs and compare which factors they find significantly affect living well. The findings pave the way for future explorations into the factors influencing living well differ between LTCs and the best interventions to improve living well with LTCs.

The study of illness narratives, or pathography, is an emerging discursive scholarship within the field of medical humanities. Centering the connection between narrativity and identity, illness narratives stand as a meaningful response to perceived medical subjugation. This paper turns to a particular case study of hyperandrogenism, a medical condition characterized by “excessive” levels of male hormones (androgens) such as testosterone. When identified in the female body, the increased androgens are associated with “masculinizing” symptoms including excess body and facial hair, male-pattern baldness, infertility, elevated sex drive, increased muscle mass, and absence of menstrual bleeding. For the purposes of imaging new ways to situate the phenomenological experience of hyperandrogenism and illness of the gendered body, a linkage can be made between such an illness and Sigmund Freud’s conception of the uncanny. In line with Martin Heidegger’s conception of phenomenology, I will turn to the lived experience of women with hyperandrogenism through their digital illness narratives (writings of their experience of illness in online blogs), and outline how the experience of hyperandrogenism distorts temporal reality by making “alien” both the past and future. I will show how the gendered body, and therefore self-identity and selfhood, become abnormal in the sense of Freud’s uncanny. Finally, I will discuss how the experience of hyperandrogenism and illness of the gendered body work to trouble the notion of the “everyday.”

Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their...

This paper aims to (re)ignite debate about the role of narrative in the medical humanities. It begins with a critical review of the ways in which narrative has been mobilised...

In the field of health care, recovery, and pain management, more and more interest is being shown in the development of a patient-centred medicine able to overcome several of the obvious limitations of the predominant medical conception of the ars medendi . Over the last few decades, professionals and health agencies have refocused their attention on the original humanistic vocation of Western medicine, making use of the analysis tools of the Medical Humanities , as well as the actual results of their use in clinical practice. Drawing on the ongoing debate of the last few decades in English-speaking countries, the paper deals with two main issues. In view of a treatment strategy and more effective shared caring, the first part underlines the need for healthcare personnel to increase their propensity to listen empathetically and appreciate the patient’s story of his/her suffering. This will be followed by an in-depth examination of, on the one hand, the main structures involved in the illness experience and on the other, the ontological metamorphosis and the new order and set of values that such an experience generates. The paper ends with reference to the polymorphic and polycentric nature of the Medical Humanities and the holistic epistemology that characterizes them.