Death Café, Bauman and striving for human connection in ‘liquid times’

The death-positive movement, the latest enactment of the death awareness movement, posits that contemporary societies are suffering under a ‘death taboo’ and that people should talk more about death. In this article, we analyse an international social franchise aligned with this movement – Death Café – whereby strangers gather in a café setting to talk informally about death and dying. Drawing on interviews conducted with 49 Death Café organisers in 34 countries, we apply the theories of Zygmunt Bauman to interpret this social initiative. Our analysis shows that the way in which the temporary café space is staged for atmosphere and attended by strangers who engage in ‘taboo’ conversation, all serves to engender feelings of intimacy and connection. Rather than viewing Death Cafés as primarily spaces for death awareness-raising, we interpret them as paradigmatic examples of what Bauman termed ‘peg’ communities, constructed to assuage the loneliness experienced by individuals in liquid modernity

The global spread of death café: a cultural intervention relevant to policy?

New demographic and epidemiological trends mean people are dying at older ages and over long periods of time, from multiple, chronic illnesses. There is a perception that these growing and changing needs will require novel community responses. One starting point is having ‘conversations’ about dying and death, and in this the phenomenon of ‘Death Café’ merits attention. In the first study of its kind, we report on interviews with forty-nine Death Café organisers in thirty-four countries, exploring how this ‘cultural intervention’, first developed in the UK, has transferred elsewhere. Using thematic analysis, we identify competing tensions between: local translation of Death Café and a desire for international alignment alongside instrumental use of the Death Café form and its incidental effects. The passion and commitment of Death Café organisers is compelling but may not lead to the behavioural change required to support a new public face of dying

Orchestrating households as collectives of participation in the distributed energy transition: new empirical and conceptual insights

Building on recent dialogue between sustainability transition theories and Science and Technology Studies (STS), this article conceptually and empirically studies and analyses the orchestration of households as collectives of participation in the process of distributed energy transition. Synthesising across past studies, we explore three types of what we call ‘collectives of orchestration’, relatively durable collectives that work to orchestrate participation at a distance in space and time. These are: a) collectives of policy production and regulation, b) collectives of research, development and innovation, and c) collectives of technology design. We explore how these collectives enroll households, and the ways in which they mediate participation through different strategies and techniques, producing conditions for various modes of participation. We proceed to discuss the co-production of participation in and by households, including ways in which households can re-configure issues around which research and demonstration projects are set up. Through this exercise, we identify four distinct processes through which orchestration is enacted: 1) the production of visions, expectations and imaginations, 2) network construction and re-configuration, 3) scripting and 4) domestication

Assisted dying and palliative care in three jurisdictions: Flanders, Oregon, and Quebec

Background: An increasing number of jurisdictions around the world are legalizing assisted dying. This creates a particular challenge for the field of palliative care, which often precludes producing premature death by the injection or self-administration of lethal medications upon a patient’s voluntary request. A 2019 systematic scoping review of the literature about the relationship between palliative care and assisted dying in contexts where assisted dying is lawful, found just 16 relevant studies that included varied and combined stances ranging from complete opposition, to collaboration and integration. Building on that review, the present study was conducted in Quebec (Canada), Flanders (Belgium), and Oregon (USA), with the objective of exploring the relationship between palliative care and assisted dying in these settings, from the perspective of clinicians and other professionals involved in the practice. Methods: Semi-structured in-depth qualitative interviews were conducted with 29 professionals from Oregon [10], Quebec [9] and Flanders [10]. Participants were involved in the development of policy, management, or delivery of end of life care services in each of the jurisdictions. Data was analyzed thematically and followed a procedure of data immersion, and the construction of a thematic and interpretive account. Results: Three themes were identified from each of the locations. Flanders: the integrated approach; discontents in palliative care; concerns about liberalization of assisted dying laws. Oregon: the role of hospice; non-standardized protocols and policies; concerns about access to medications and care. Quebec: a contested relationship; the special situation of independent hospice; lack of knowledge about and access to palliative care. Conclusions: No clear and uniform relationship between palliative care and assisted dying can be identified in any of the three locations. The context and practicalities of how assisted dying is being implemented alongside access to palliative care need to be considered to inform future laws. We seek a better understanding of whether and in what ways assisted dying presents a threat to palliative care

Interpreting outcome following foot surgery in people with rheumatoid arthritis

BACKGROUND: Foot surgery is common in RA but the current lack of understanding of how patients interpret outcomes inhibits evaluation of procedures in clinical and research settings. This study aimed to explore which factors are important to people with RA when they evaluate the outcome of foot and ankle surgery. METHODS AND RESULTS: Semi structured interviews with 11 RA participants who had mixed experiences of foot surgery were conducted and analysed using thematic analysis. Responses showed that while participants interpreted surgical outcome in respect to a multitude of factors, five major themes emerged: functional ability, participation, appearance of feet and footwear, surgeons' opinion, and pain. Participants interpreted levels of physical function in light of other aspects of their disease, reflecting on relative change from their preoperative state more than absolute levels of ability. Appearance was important to almost all participants: physical appearance, foot shape, and footwear were closely interlinked, yet participants saw these as distinct concepts and frequently entered into a defensive repertoire, feeling the need to justify that their perception of outcome was not about cosmesis. Surgeons' post-operative evaluation of the procedure was highly influential and made a lasting impression, irrespective of how the outcome compared to the participants' initial goals. Whilst pain was important to almost all participants, it had the greatest impact upon them when it interfered with their ability to undertake valued activities. CONCLUSIONS: People with RA interpret the outcome of foot surgery using multiple interrelated factors, particularly functional ability, appearance and surgeons' appraisal of the procedure. While pain was often noted, this appeared less important than anticipated. These factors can help clinicians in discussing surgical options in patients

Stewart-Treves syndrome: MR imaging of a postmastectomy upper-limb chronic lymphedema with angiosarcoma

The rare occurrence of angiosarcoma in postmastectomy upper-limb lymphedema with magnetic resonance (MR) imaging is discussed. Unfamiliarity with this aggressive vascular tumor and its harmless appearance often leads to delayed diagnosis. Angiosarcoma complicating chronic lymphedema may be low in signal intensity on T2-weighting and short tau inversion recovery (STIR) imaging reflecting the densely cellular, fibrous stroma, and sparsely vascularized tumor histology. Additional administration of intravenous contrast medium revealed significant enhancement of the tumorous lesions. Awareness of angiosarcoma and its MR imaging appearance in patients with chronic lymphedema may be a key to early diagnosis or allow at least inclusion in the differential diagnosis

Blurry lines and spaces of tension. Clinical-ethical and Existential issues in Intensive Care: A study of three European Intensive Care Units

“Come on”, the medical student said, practically tugging my sleeve. “We’re gonna go talk to a patient. And he has AIDS! It’s super interesting.” We went in a hurry, a young doctor, two medical students, and myself, off to see the patient, and to evaluate whether or not to admit him to the Intensive Care Unit. Walking briskly down the halls of the ICU on our way to the next floor, it did feel, I reluctantly admitted to myself, rather interesting indeed. I first entered the ICU as an observer for my Master thesis in philosophy in 2012, and then later in 2014 in connection with my PhD work. I had never experienced intensive care, and my expectations of the hospital were colored by typically Hollywood-ized television representations. Consequently, I expected an environment of glorious mayhem and constant dramatic action. Judging from the reactions I continue to get from friends and peers upon hearing about the object of my study, I suspect that their ideas are much the same as mine were. I have no medical or nursing training. Consequently, when I decided to do fieldwork in the ICU, not only did I receive a fair share of concerned looks; I was warned. On the one hand, there was the concern that such a topic might be awfully depressing. This is a tendency identified by several authors working on sensitive topics, especially end-of-life, or death (Hockey 2007). Concerns also centered on my physical well-being. A friend of mine who was an intern physician at the time cautioned me. Are you prepared for this? He asked. Prepared for the sights? The sounds? Indeed, it is no secret that the hospital, or any form of clinic, may confront the observer, next of kin, or the patients themselves with distinctly uncomfortable sights, sounds, and smells. Anyone who knows someone who has gone to medical or nursing school knows that fainting or vomiting are expected rites of passage during training, although this normally occurs in the surgical suite or by the autopsy table. As Kate Watson poignantly puts it, medicine (and I would add nursing) is “an odd profession in which we ask ordinary people to act as if feces and vomit do not smell, unusual bodies are not at all remarkable, and death is not frightening.” (2011: 43). Indeed, the medical gaze does not come naturally to most, and has to be achieved through training. Untrained as I was, I braced myself. Much of the time, being an observer in the ICU means observing in the classical sense of the word: standing on the sidelines and watching. Being trained in philosophy, I planned to conduct a form of epoché, disregarding any nuisances in order to get to the ‘real’ information, and I was prepared to take steps to prevent any emotional or somatic reactions from endangering my mission of observation. They were something that needed to be overcome. I prepared for gruesome sights of blood and goo, and if there was one thing that I did not expect, it was to be bored. Arriving at the main adult ICU of a large Norwegian university hospital then, I found myself profoundly surprised. There was in fact hardly a sound. There was no running, no yelling—there was hardly any talking at all. Quiet control reigned in this country of sleeping patients. No fuss, no movement, no emotion, and no unnecessary words were uttered. I quickly adapted to the general mood of the place, and understood that loud noises and commotion would have been perceived as quite disrespectful. As I moved from site to site, becoming increasingly familiar with the world of the ICU, I made a surprising and initially rather satisfying realization. The truth was that no amount of slime, bags of adult feces, blood and urine, open surgical wounds, necrotic skin, or amputated limbs had the appalling effect on me that I had anticipated. So little in fact, that I on several occasions felt prompted to lie to staff when they rhetorically questioned me, saying, “How hard it must be for you to be here.” Somehow, it felt like an insult to them if I told the truth that no; it did not really bother me. I was relieved that I managed to withstand feelings of nausea and disgust when faced with things that are normally thought to be quite off-putting. And of course, had I fainted at the sight of these things, any fieldwork in the clinic would have been nearly impossible to carry out. Indeed, I concluded, not without certain smugness; I might have made an excellent surgeon. Nevertheless, this is not to say that I remained unaffected—in the most literal sense of the word—by the experiences of the ICU. By its very nature, the intensive care unit can be an overwhelming space. One student who had previously spent time in many other hospital units, at one point described coming there as receiving a slap in the face. I suffered feverish dreams every night for weeks, waking up freezing in a clammy cover of my own cold sweat. I started regularly eating more. On several occasions, I felt a distinctive burning sensation coming from within, resulting in cold sweat on my forehead, peering through the pores of my skin, my heart pounding. seemingly in my stomach, eyeballs feeling too large for my eye sockets. Months after fieldwork was concluded, some of the people I had encountered continued to haunt my thoughts. Whilst observing, I frequently experienced the feeling of violating upon something, of performing some transgressive act by virtue simply of my presence. The reason for this autobiographical note, is that herein indeed, lay the very center of my investigation. Conducting ethnographic research on a high-tech biomedical environment, the researcher comes face to face with an exotic world that simultaneously feels strangely familiar. In my earliest exploration of intensive care, my Master thesis entitled “Fully human, fully technical” (Toute humaine, toute technique) (2012), I argued that this branch of technology-heavy, highperformance clinical practice had the possibility to destabilize categories, not least with regard to human existential concerns. Nature and culture, technology and biology, body and person, subjectivity and objectivity, science and art, life and death, the secular and the sacred. Dealing with these realities involves a balancing act—a separation, and a bridging, of categories. There is a definite allure to intensive care. It is a place where sometimes awesome—in the very literal sense of the word—recoveries take place. Simultaneously, it incites fear. This is a thesis about intensive care. It is about hospital work. It is about the closeness of life and death, and more generally about what it means to be human. The way care is practiced, and the ways in which death is enacted and talked about. The ways in which personhood takes form in this setting, and those for whom this category is restricted. All of these aspects reveal something about both the values of our society and of human resilience. In many ways I attempted in this thesis to work from the statement made by Foucault at the end of his “Naissance de la Clinique”, namely that if, in the biomedical era, medical scientists have been central to European culture, this is not due to their qualities as philosophers. It is because medical thought (la pensée médicale) engages intimately with the philosophical status of humankind (1966: 202). In the spring of 2014, between January and June, I conducted a multi-sited fieldwork in three European intensive care units—in Norway, France, and Spain. I spent a month at each place. This research was spurred by my Master thesis work for which I did a three-week long fieldwork in Norway in 2012. Combined, these field experiences comprise the empirical basis of my PhD project. Although the dissertation belongs to the discipline of social anthropology, the project deliberately crosses disciplinary boundaries, combining practical philosophy and ethics with ethnographic methods. The working title of the project was “Clinical-ethical and existential issues in intensive care.” My PhD project has been a part of the interdisciplinary, international research program “The Cultural Logic of Facts and Figures” (CUFF), funded by the Research Council of Norway. The overall ambition of the CUFF project was to examine a number of contemporary modes of objectification, measurement, and standardization to see how they constitute a cultural logic and shape four main dimensions of social life: meaning/representation, morality, notions of thinghood, and notions of personhood (NTNU, n.d.). It was decided already at the proposal stage of my work that I would write an articlebased thesis. In an article-based project, each article stands on its own as independently published or publishable pieces of academic production, allowing for a different focus in each article. There is little precedence for writing article-based dissertations in anthropology. In a casual discussion with two experienced anthropologists, one of them suggested, referencing the classical anthropologist Clifford Geertz, that in fact, since the discipline developed together with the format of the monograph, the two indeed became intertwined, and the monograph become the very language, or script, of anthropology. Consequently, the arrival of the article-based thesis into this discipline presents a problem, because there is no script for it. No recipe. My colleagues’ reasoning, in line with Geertz, resonated with me. Yet rather than see this lack of a script as a problem, I have chosen to view it as an opportunity to be creative. It is my hope, and intention, that the articles may take on a new richness and texture, through this preliminary part. Moreover, I would be delighted if my work could be a contribution to legitimating article-based thesis work within the discipline, and contributing to changing and evolving the script of anthropology

Medically timed death as an enactment of good death: an ethnographic study of three European intensive care units

The article is based on ethnographic observation and semistructured interviews with personnel in three European adult intensive care units. Intensive care is a domain of contemporary biomedicine centered on invasive and intense efforts to save lives in acute, critical conditions. It echoes our culture’s values of longevity. Nevertheless, mortality rates are elevated. Many deaths follow from nontreatment decisions. Medicalized dying in technological medical settings are often presented as unnatural, impersonal, and undesirable ways of dying. How does this affect the way in which death is experienced by intensive care professionals? What might the enactment of dying in intensive care reveal about our cultural values of good and bad dying

Dignity in practice: day-to-day life in intensive care units in Western Europe

Dignity is a key concept in contemporary health care ethics, but the practical meaning of dignity in care remains unclear. In this article, I show that in practice, different and possibly conflicting notions of what dignity means are engaged simultaneously in the care of critical patients. The empirical data is based on ethnographic fieldwork conducted in three separate intensive care units in three European countries, Spain, Norway, and France, in the spring of 2014. Four weeks were spent at each site. Using participant observations and semi-structured interviews with 24 intensive care unit staff, I illustrate how the ideal of patient dignity is carried out in practice in the daily life of these units