The video window: How video consultation technology reveals and redefines the art of medicine in Danish specialist practice.

In the contemporary landscape of technologically mediated healthcare, video consultations introduce a dynamic interplay of challenges and opportunities. Taking the notion of 'the art of medicine' as an analytical frame, and drawing on interviews with medical specialists as well as participant observation of video consultations with patients (carried out between February 2022 and January 2023), this article investigates how video consultation technology changes the practices of medical specialists in the Danish healthcare system. Informed by post-phenomenology, we approach video consultations metaphorically as 'windows' between medical specialists and patients, unveiling three pivotal dimensions characterizing these changes. First, the shift from a physical to a virtual consultation room requires a reevaluation of the authoritative nature of the clinic, emphasizing the need for negotiating and staging the clinical space online. Second, while video consultations limit doctors' ability to rely on traditional non-verbal cues such as body language, they offer glimpses into patients' home environments, exposing the influence of social preconceptions on medical evaluations. Third, the adoption of video consultations introduces new conditions for doctors' use of senses, accentuating the importance of reflecting on the roles of different sensory impressions in the art of medicine. Our study illuminates how video consultation technology simultaneously expands and constrains the engagement between medical specialists and patients. Despite their inherent limitations, video consultations bring medical specialists closer to some of the intricacies of patients' lives. This proximity offers new insights and renders visible the roles of caregivers and relatives in the patient's care. The metaphor of 'the video window' encapsulates this tension between distance and closeness in video consultations, portraying the patient as both fragmented and socially situated. Our study extends beyond traditional patient and provider satisfaction evaluations, providing nuanced insights into how video consultations reconfigure the art of medicine.

'We had conversations we wouldn't have had otherwise'-Exploring home-dwelling people with dementia and family members' experiences of deliberating on ethical issues in a literature-based intervention.

AIM: To explore home-dwelling people with dementia and family members' perceptions of the feasibility and acceptability of an intervention using dementia-related literature excerpts to facilitate conversations on ethical issues related to living with dementia. BACKGROUND: Ethical issues in dementia care emerge throughout the illness. In the early stages, they may involve decisions about disclosing the illness to the family, shifting roles and responsibilities, and considerations of transitioning to a nursing home. Addressing ethical issues and providing adequate support to home-dwelling people with dementia and their families are often lacking. DESIGN: An exploratory-descriptive qualitative study. METHODS: We conducted eight interviews with 14 home-dwelling persons with dementia and their family caregivers. Six were dyadic interviews, and two were individual interviews with family caregivers. We analysed the interview data using template analysis. We adhered to the COREQ checklist in reporting this study. RESULTS: Using excerpts from dementia-related literature was a feasible and acceptable way of initiating discussions on ethical issues among home-dwelling persons with dementia and family caregivers. However, engaging the families of newly diagnosed individuals was challenging due to emotional distress. The intervention provided peer support, including identifying with others and sharing experiences. Moreover, participating couples found intimacy and relational attunement through shared reflections. CONCLUSION: Based on the findings, it appears that the participants in this study felt that using excerpts from dementia-related literature to deliberate on ethical issues was feasible and acceptable. Deliberating on ethical issues with peers and family caregivers offers valuable social support and opportunities for strengthening relationships. IMPLICATIONS FOR PATIENT CARE: This study makes an important contribution by providing valuable insights into how ethical issues related to living with dementia can be addressed using related literature and suggests how the intervention can be integrated into existing care initiatives for home-dwelling people with dementia and their families. REPORTING METHOD: We have adhered to relevant EQUATOR guidelines with the COREQ reporting method. PATIENT OR PUBLIC CONTRIBUTION: A healthcare professional working as a so-called dementia coordinator (a title used in the Danish context) was involved in the conduct of this study by being responsible for the recruitment of home-dwelling people with dementia and their family members. Moreover, she had joint responsibility for facilitating the intervention along with the first author.

Venturing Inside the Body: Transformative Experiences of Pain, Anatomy and Age among Danish Patients Undergoing Awake Arthroscopic Surgery.

When patients who undergo awake arthroscopic surgery follow the surgery on a screen, medical image technologies enable a rare look inside one's own body. Based on ethnographic fieldwork at an orthopedic surgery unit in Denmark, we investigate how patients experience their bodies during surgery. Patients see surgery as proof of their pain, experience an anatomical re-categorization, and contemplate the decay of the aging body. We argue that awake arthroscopic surgery constitutes a liminal setting transforming patients' perceptions of their body and their sufferings. Furthermore, we discuss how awake arthroscopic surgery can be understood as a frame for producing new realities. It constitutes a particular way of seeing and understanding that highlights the seductiveness of the visual as an objective carrier of truth and reminds us to remain critical toward the power of certain frames of knowledge production in medical settings.

Attitudes of European students towards family decision-making and the harmonisation of consent systems in deceased organ donation: a cross-national survey.

BACKGROUND: European countries are increasingly harmonising their organ donation and transplantation policies. Although a growing number of nations are moving to presumed consent to deceased organ donation, no attempts have been made to harmonise policies on individual consent and the role of the family in the decision-making process. Little is known about public awareness of and attitudes towards the role of the family in their own country and European harmonisation on these health policy dimensions. To improve understanding of these issues, we examined what university students think about the role of the family in decision-making in deceased organ donation and about harmonising consent policies within Europe. METHODS: Using LimeSurvey© software, we conducted a comparative cross-sectional international survey of 2193 university students of health sciences and humanities/social sciences from Austria (339), Belgium (439), Denmark (230), Germany (424), Greece (159), Romania (190), Slovenia (190), and Spain (222). RESULTS: Participants from opt-in countries may have a better awareness of the family's legal role than those from opt-out countries. Most respondents opposed the family veto, but they were more ambivalent towards the role of the family as a surrogate decision-maker. The majority of participants were satisfied with the family's legal role. However, those who were unsatisfied preferred to limit family involvement. Overall, participants were opposed to the idea of national sovereignty over consent policies. They favoured an opt-out policy harmonisation and were divided over opt-in. Their views on harmonisation of family involvement were consistent with their personal preferences. CONCLUSIONS: There is overall division on whether families should have a surrogate role, and substantial opposition to granting them sole authority over decision-making. If European countries were to harmonise their policies on consent for organ donation, an opt-out system that grants families a surrogate decision-making role may enjoy the widest public support.

Mothering a population: How Danish mothers experience newborn dried blood spot samples and their considerations about re-use of samples for research purposes.

INTRODUCTION: Newborn dried blood spot (NDBS) samples have a primary clinical purpose of screening, but often also a secondary purpose of re-use for research purposes. This study investigates how Danish mothers experience the sample being taken, their considerations about potential re-use for research, and their reflections on the level of information they receive about NDBS samples and their re-use for research purposes. METHODS: This study is based on semi-structured interviews with 19 mothers of newborn babies, conducted within the first year after the birth. Mothers were recruited through online media and interviewed in their own homes or at the university. All interviews were coded thematically with an abductive approach. RESULTS: Generally, mothers have difficulties in recollecting the NDBS sample. Overall, they are pleased with the re-use of samples for research purposes. However, some mothers are concerned about the consent procedure. The mothers did not have one specific attitude towards more information about the research done using newborn samples. Based on our findings, we recommend a higher level of transparency regarding national genetic research in general; and, for the NDBS samples specifically, a more complete information and consent procedure. Further, we encourage more studies into what kinds of information parents might find useful about research based on NDBS samples. CONCLUSIONS: Mothers do not always remember experiencing the NDBS sample, are generally positive towards re-use for research purposes, but unsure about best information level.

"I Just Want Some Clear Answers": Challenges and Tactics Adopted by Migrants in Denmark When Accessing Health Risk Information about COVID-19.

Health risk communication plays a crucial role in preventing the spread of infectious disease outbreaks such as the current coronavirus (SARS-CoV-2). Yet, migrants are far too often forgotten in health risk communication responses. We investigate the challenges and efforts made by migrants in Denmark-in the initial months of the pandemic-to access information about COVID-19. We draw on 18 semi-structured interviews conducted in May and June 2020. All interviews are thematically coded and analyzed. Our analysis reveals that many of the migrants faced several challenges, including accessing information in a language understandable to them and navigating constant streams of official news flows issuing instructions about which actions to take. However, we also note that the participating migrants found numerous creative ways to address some of these challenges, often aided by digital tools, helping them access crucial health and risk information. This paper highlights that migrants constitute an underserved group in times of crises. They are vulnerable to getting left behind in pandemic communication responses. However, we also identify key protective factors, social resources, and agentic capabilities, which help them cope with health and risk information deficits. National governments need to take heed of these findings to inform future pandemic responses.

The public debate on organ donation and presumed consent in Denmark: Are the right issues being addressed?

The legal framework for organ donation in Denmark is informed consent. But due to the unsatisfactory number of organ donors, Denmark is considering changing legislation to presumed consent. This article discusses the public debate on organ donation and presumed consent in Denmark, and asks whether the right issues are being addressed in the quest towards more available organs and better donor rates? Basing our considerations on the various arguments in the debate and on scientific findings, we question the potential benefits of presumed consent and challenge some of the assumptions and rationalizations that characterize the discussions in Denmark regarding public support, public trust and the role of the family in donation decisions.

Channeling hope: An ethnographic study of how research encounters become meaningful for families suffering from genetic disease in Pakistan.

The Pakistani population has become particularly interesting for international genetic research due to its high rates of consanguinity. Based on 5 months fieldwork in Faisalabad among Pakistani genetic researchers from December 2015-January 2016 and February-April 2017 and interviews with 36 families and 14 researchers, this article focuses on research encounters. It demonstrates how genetic research figures in the lives of families affected by genetic medical conditions in light of their everyday struggles with disease, and considers their perspectives on destiny and hope. Through examining the potentials of the research encounter, we ask how research becomes meaningful in the lives of Pakistani families affected by genetic disease: how these families and individuals enable different modes of sharing tragic stories, contemplating hope and contesting logics of consanguinity. International genetic research depends on human raw material. If we wish to understand the precarious lives this research relies on, then the everyday struggles with disease, and the perspectives of families must be methodologically and theoretically engaged.

Guardians of 'the gift': the emotional challenges of heart and lung transplant professionals in Denmark.

This paper deals with the emotional challenges encountered by doctors and nurses caring for heart and lung transplant patients. Organ transplantation enables body parts from the dead to become usable in patients with no other life-saving option. These exchanges are not possible without transplant professionals carefully selecting, guiding and interacting with organ recipients before, during and after the transplant. Based on anthropological fieldwork at a Danish heart and lung transplant unit, the paper explores how doctors and nurses experience and handle the emotional challenges of their working life. By focusing on the everyday life of the transplant unit which, contrary to public understanding of transplant miracles, is sometimes characterised by sad cases and devastation, this paper argues that transplant professionals operate in the presence of death. Medically and emotionally they are at risk. They must take the difficult decisions of whether to admit critically ill patients onto the organ waiting list; face the distress of post-transplant sufferings and deaths; and deal with organ recipients who do not behave according to post-transplant recommendations. Drawing on a familiar metaphor for donated organs, it is suggested that transplant doctors and nurses are 'guardians of the gift'. Attention to the emotional burdens and rewards of this particular position enables new understandings of the practices of transplant medicine, of gift exchange theory, and of the role of emotion in medical practice.

From motivation to acceptability: a survey of public attitudes towards organ donation in Denmark.

BACKGROUND: Over the past three decades, public attitudes to organ donation have been a subject of numerous studies focusing on donor motivation. Here, we present a fresh approach. We suggest focusing on public acceptability instead of motivation. The point is to understand public attitudes well enough to avoid risking public support for organ transplantation. We conducted the study in Denmark because there have been significant developments in public attitudes to organ donation in this country. In the 1990s, Denmark was a country with very low public support for organ donation and Denmark was the last country in Europe to introduce brain death as a legal criterion of death, whereas today Eurobarometer surveys rate Denmark as one of the European countries with the highest support for deceased organ donation from brain dead donors. METHODS: We conducted a telephone survey in Denmark (N = 1195). A questionnaire was developed on the basis of preceding qualitative studies and pilot testing and included reuse of one item from earlier surveys to facilitate historical comparison. The analysis of the data was carried out using IBM SPSS Statistics 22 and focused on descriptive statistics. RESULTS: A clear majority of 91.9 % are positive or very positive towards organ donation; 85.8 % like the idea of their body being used after their death, 85.0 % is willing to donate their own organs, 82.1 % to donate their tissue and only 2.3 % find that too much has been done to promote organ donation. There is limited support for monetary incentives for organ donation (5.8 %) and presumed consent (30.4 %), while a majority (63.9 %) supports making it mandatory to register a personal decision. Religious self-identification has limited impact on attitudes. CONCLUSIONS: We can identify a shift over the past three decades from marked opposition to organ transplantation to strong support as well as a pattern in the contemporary public attitudes, which can help explain what is central to public acceptability: self-determination. Policies fostering choice are met with a majority of positive attitudes, while presumed consent and monetary incentives are met with more negative attitudes. Our approach calls for comparative studies in other countries to generate a better overall understanding of the conditions of acceptability, which need to be in place to ensure the long-term social robustness of organ donation and thereby safeguard this important medical technology.

"Make Sure Somebody Will Survive from This": Transformative Practices of Hope among Danish Organ Donor Families.

Based on anthropological fieldwork among Danish organ donor families and hospital staff in neurointensive care units, this article explores the transformative practices of hope in Danish organ donation. Focusing on various phases of the organ donation process, I demonstrate how families and professionals practice hope in astounding ways: when hoping for organs, when hoping for the end of patient suffering, when hoping for the usability of the donor body, and when hoping to help future donor families by sharing painful experiences. By focusing on such practices and transformations of hope, this article sheds light on the social negotiations of life and death among families and staffs in medical contexts and describes how the dignity of the deceased donor and the usability of the donor body are closely connected in family attempts to make donation decisions meaningful during and after a tragic death.

Transplantation as an abstract good: practising deliberate ignorance in deceased organ donation in Denmark.

This article investigates valuations of organ transfers that are currently seen as legitimising increasingly aggressive procurement methods in Denmark. Based on interviews with registered donors and the intensive care unit staff responsible for managing organ donor patients we identify three types of valuation: the needs of recipients, respect for donors' autonomy and support of donors' relatives in their grieving process. Sometimes these modes of valuation conflict with each other, and we show how our informants then respond with a form of deliberate ignorance. We suggest that deliberate ignorance has a more general salience in the organ transplant field by way of facilitating a perception of organ transplantation as an abstract moral good rather than a specific good for specific people. Furthermore, we suggest that multiple forms of ignorance sustain each other: a desire for ignorance with respect to the prioritisation of recipients sustains pressure for more organs; this pressure necessitates more aggressive measures in organ procurement and these measures increase the need for ignorance in relation to the actual procedures as well as the actual recipients. These attempts to avoid knowledge are in remarkable contrast to the otherwise widespread policy emphasis on education and information in this medical domain.

Organ donation and the ethics of muddling through.

Organ donation offers opportunities for people in critical care units to help save the lives of other patients. It is not always easy, however, to handle the transition from treating a patient to preserving a potential donor, and organ donation consistently provokes ethical questions in critical care units. What do we expect ethics to deliver? In light of a recent ethics conference in Denmark, we suggest that by acknowledging that decisions made in the clinic rarely abide to rational decision trees with clear ethical priorities, we can better learn from each other's experiences. We suggest embracing an 'ethics of muddling through' to enhance relevant reflections and stimulate a productive dialogue among health professionals.