This article highlights the limitations of the tendency to frame health- and wellbeing-related digital tools (mHealth technologies) as empowering devices, especially as they play an increasingly important role in the National Health Service (NHS) in the UK. It argues that mHealth technologies should instead be framed as digital companions. This shift from empowerment to companionship is advocated by showing the conceptual, ethical, and methodological issues challenging the narrative of empowerment, and by arguing that such challenges, as well as the risk (...) of medical paternalism, can be overcome by focusing on the potential for mHealth tools to mediate the relationship between recipients of clinical advice and givers of clinical advice, in ways that allow for contextual flexibility in the balance between patiency and agency. The article concludes by stressing that reframing the narrative cannot be the only means for avoiding harm caused to the NHS as a healthcare system by the introduction of mHealth tools. Future discussion will be needed on the overarching role of responsible design. (shrink)

We argue that while digital health technologies (e.g. artificial intelligence, smartphones, and virtual reality) present significant opportunities for improving the delivery of healthcare, key concepts that are used to evaluate and understand their impact can obscure significant ethical issues related to patient engagement and experience. Specifically, we focus on the concept of empowerment and ask whether it is adequate for addressing some significant ethical concerns that relate to digital health technologies for mental healthcare. We frame these concerns using (...) five key ethical principles for AI ethics (i.e. autonomy, beneficence, non-maleficence, justice, and explicability), which have their roots in the bioethical literature, in order to critically evaluate the role that digital health technologies will have in the future of digital healthcare. (shrink)

Green bioethics is an area of research and scholarship that examines the impact of healthcare practices and policies on the environment and emphasises environmental values, such as ecological sustainability and stewardship. Some green bioethicists have argued that healthcare providers should inform patients about the environmental impacts of treatments and advocate for options that minimise adverse impacts. While disclosure of information pertaining to the environmental impacts of treatments could facilitate autonomous decision-making and strengthen the patient–provider relationship in situations where (...) patients have clearly expressed environmental concerns, it may have the opposite effect in other situations if makes patients feel like they are being judged or manipulated. We argue, therefore, that there is not a generalisable duty to disclose environmental impact information to all patients during the consent process. Providers who practice green bioethics should focus on advocating for system-level changes in healthcare financing, organisation and delivery and use discretion when bringing up environmental concerns in their encounters with patients. (shrink)

Several ethicists have defended the use of responsibility-based criteria in healthcare rationing. Yet in this article we outline two challenges to the implementation of responsibility-based healthcare rationing policies. These two challenges are, namely, that responsibility for past behavior can diminish as an agent changes, and that blame can come apart from responsibility. These challenges suggest that it is more difficult to hold someone responsible for health related actions than proponents of responsibility-sensitive healthcare policies suggest. We close by (...) discussing public health policies that could function as an alternative to contentious, responsibility-sensitive rationing policies. (shrink)

Artificial intelligence-based (AI) technologies such as machine learning (ML) systems are playing an increasingly relevant role in medicine and healthcare, bringing about novel ethical and epistemological issues that need to be timely addressed. Even though ethical questions connected to epistemic concerns have been at the center of the debate, it is going unnoticed how epistemic forms of injustice can be ML-induced, specifically in healthcare. I analyze the shortcomings of an ML system currently deployed in the USA to predict (...) patients’ likelihood of opioid addiction and misuse (PDMP algorithmic platforms). Drawing on this analysis, I aim to show that the wrong inflicted on epistemic agents involved in and affected by these systems’ decision-making processes can be captured through the lenses of Miranda Fricker’s account of hermeneutical injustice. I further argue that ML-induced hermeneutical injustice is particularly harmful due to what I define as an automated hermeneutical appropriation from the side of the ML system. The latter occurs if the ML system establishes meanings and shared hermeneutical resources without allowing for human oversight, impairing understanding and communication practices among stakeholders involved in medical decision-making. Furthermore and very much crucially, an automated hermeneutical appropriation can be recognized if physicians are strongly limited in their possibilities to safeguard patients from ML-induced hermeneutical injustice. Overall, my paper should expand the analysis of ethical issues raised by ML systems that are to be considered epistemic in nature, thus contributing to bridging the gap between these two dimensions in the ongoing debate. (shrink)

In this article we report relevant data that shed light on the topic of hope and patients’ expectations in the use of DBS, for standard, approved, and established indications, based on a broader qualitative study on the ethical and social challenges that healthcare providers face in the field of DBS.

Limited health literacy is a pervasive and independent risk factor for poor health outcomes. Despite decades of reports exhibiting that the healthcare system is overly complex, unneeded complexity remains commonplace and endangers the lives of patients, especially those with limited health literacy. In this article, we define health literacy and describe the empirical evidence associating health literacy and poor health outcomes. We recast the issue of poor health literacy from within the ethical perspective of the least well-off and argue (...) that poor health outcomes deriving from limited health literacy ought to be understood as a fundamental injustice of the healthcare system. We offer three proposals that attempt to rectify this injustice, including: universal precautions that presume limited health literacy for all healthcare users; expanded use of technology supported communication; and clinical incentives that account for limited health literacy. (shrink)

Peer commentary on Char, Abràmoff & Feudtner (2020) target article: "Identifying Ethical Considerations for Machine Learning Healthcare Applications" .

Background:To better understand the kinds of ethical challenges that emerge when using coercion in mental healthcare, and the importance of these ethical challenges, this article presents a systematic review of scientific literature.Methods:A systematic search in the databases MEDLINE, PsychInfo, Cinahl, Sociologicals and Web of Knowledge was carried out. The search terms derived from the population, intervention, comparison/setting and outcome. A total of 22 studies were included.Ethical considerations:The review is conducted according to the Vancouver Protocol.Results:There are few studies that study (...) ethical challenges when using coercion in an explicit way. However, promoting the patient’s best interest is the most important justification for coercion. Patient autonomy is a fundamental challenge facing any use of coercion, and some kind of autonomy infringement is a key aspect of the concept of coercion. The concepts of coercion and autonomy and the relations between them are very complex. When coercion is used, a primary ethical challenge is to assess the balance between promoting good and inflicting harm. In the included studies, findings explicitly related to justice are few. Some studies focus on moral distress experienced by the healthcare professionals using coercion.Conclusion:There is a lack of literature explicitly addressing ethical challenges related to the use of coercion in mental healthcare. It is essential for healthcare personnel to develop a strong awareness of which ethical challenges they face in connection with the use of coercion, as well as challenges related to justice. How to address ethical challenges in ways that prevent illegitimate paternalism and strengthen beneficent treatment and care and trust in connection with the use of coercion is a ‘clinical must’. By developing a more refined and rich language describing ethical challenges, clinicians may be better equipped to prevent coercion and the accompanying moral distress. (shrink)

Many researchers have documented how AI and data driven technologies have the potential to have profound effects on our lives—in ways that make these technologies stand out from those that went before. Around the world, we are seeing a significant growth in interest and investment in AI in healthcare. This has been coupled with rising concerns about the ethical implications of these technologies and an array of ethical guidelines for the use of AI and data in healthcare has (...) arisen. Nevertheless, the question of if and how AI and data technologies can be ethical remains open to debate. This paper aims to contribute to this debate by considering the wide range of implications that have been attributed to these technologies and asking whether current ethical guidelines take these factors into account. In particular, the paper argues that while current ethics guidelines for AI in healthcare effectively account for the four key issues identified in the ethics literature (transparency; fairness; responsibility and privacy), they have largely neglected wider issues relating to the way in which these technologies shape institutional and social arrangements. This, I argue, has given current ethics guidelines a strong focus on evaluating the impact of these technologies on the individual, while not accounting for the powerful social shaping effects of these technologies. To address this, the paper proposes a Multiscale Ethics Framework, which aims to help technology developers and ethical evaluations to consider the wider implications of these technologies. (shrink)

A notorious debate in the ethics of healthcare rationing concerns whether to address rationing decisions with substantial principles or with a procedural approach. One major argument in favour of procedural approaches is that substantial principles are indeterminate so that we can reasonably disagree about how to apply them. To deal with indeterminacy, we need a just decision process. In this paper I argue that it is a mistake to abandon substantial principles just because they are indeterminate. It is true (...) that reasonable substantial principles designed to deal with healthcare rationing can be expected to be indeterminate. Yet, the indeterminacy is only partial. In some situations we can fully determine what to do in light of the principles, in some situations we cannot. The conclusion to draw from this fact is not that we need to develop procedural approaches to healthcare rationing, but rather that we need a more complex theory in which both substantial principles and procedural approaches are needed. (shrink)

This issue’s “Legal Briefing” column continues coverage of recent legal developments involving medical decision making for unbefriended patients. These patients have neither decision-making capacity nor a reasonably available surrogate to make healthcare decisions on their behalf. This topic has been the subject of recent articles in JCE. It has been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the “single greatest category of problems” encountered in bioethics consultation. Moreover, the scope of (...) the problem continues to expand, especially with rapid growth in the elderly population and with an increased prevalence of dementia.Unfortunately, most U.S. jurisdictions have failed to adopt effective healthcare decision-making systems or procedures for the unbefriended. “Existing mechanisms to address the issue of decision making for the unbefriended are scant and not uniform.” Most providers are “muddling through on an ad hoc basis.” Still, over the past several months, a number of state legislatures have finally addressed the issue. These developments and a survey of the current landscape are grouped into the following 14 categories. The first two categories define the problem of medical decision making for the unbefriended. The remaining 12 describe different solutions to the problem. The first six categories were covered in Part 1 of this article; the last eight categories are covered in this issue (Part 2). 1. Who are the unbefriended?2. Risks and problems of the unbefriended3. Prevention: advance care planning, diligent searching, and careful capacity assessment4. Decision-making mechanisms and standards5. Emergency exception to informed consent6. Expanded default surrogate lists: close friends7. Private guardians8. Volunteer guardians9. Public guardians10. Temporary and emergency guardians11. Attending physicians12. Other clinicians, individuals, and entities13. Institutional committees14. External committees. (shrink)

To promote ethical practices, healthcare managers must understand the ethical challenges encountered by key stakeholders. To characterize ethical challenges in Veterans Administration (VA) facilities from the perspectives of managers, clinicians, patients, and ethics consultants. We conducted focus groups with patients (n = 32) and managers (n = 38); semi-structured interviews with managers (n = 31), clinicians (n = 55), and ethics committee chairpersons (n = 21). Data were analyzed using content analysis. Managers reported that the greatest ethical challenge was (...) fairly distributing resources across programs and services, whereas clinicians identified the effect of resource constraints on patient care. Ethics committee chairpersons identified end-of-life care as the greatest ethical challenge, whereas patients identified obtaining fair, respectful, and caring treatment. Perspectives on ethical challenges varied depending on the respondent's role. Understanding these differences can help managers take practical steps to address these challenges. Further, ethics committees seemingly, are not addressing the range of ethical challenges within their institutions. (shrink)

Researchers have recently provided proof of concept for uterus transplantation, giving rise to a discussion about priority setting. This article analyses whether absolute uterine‐factor infertility (AUFI), the main indication for uterus transplantation, gives rise to a healthcare need and the extent to which such a need places justified claims on public funding in a needs‐based welfare system. It is argued that, regardless of the concept of health to which one subscribes, there is a healthcare need for uterus transplantation (...) in women with AUFI. The provision of alternative ways of addressing this need, such as surrogacy and adoption, reduces its severity. Hence, where such alternatives are publicly funded, uterus transplantation is unlikely to become cost‐effective. However, where surrogacy and adoption are not publicly funded, uterus transplantation should be given a similar priority level to other assisted reproductive technologies. In these circumstances, public funding for uterus transplants may well be justified, particularly in well‐funded healthcare system with relatively generous cost‐effectiveness thresholds. (shrink)

In this article, I apply the concept of solidarity to collective knowledge practices in healthcare. Generally, solidarity acknowledges that people are dependent on each other in many respects, and it captures those support practices that people engage in out of concern for others in whom they recognise a relevant similarity. Drawing on the rich literature on solidarity in bioethics and beyond, this article specifically discusses the role that epistemic solidarity can play in healthcare. It thus focuses, in particular, (...) on solidarity’s relationship with justice and injustice. In this regard, it is argued (1) that justice and solidarity are two equally important and complementary values that should both be considered in healthcare practices and institutions and (2) that solidarity often arises in unjust situations and can be a means to bring about justice. I transfer these ‘general’ insights about solidarity to knowledge practices in healthcare and link them to the discussion about epistemic injustices in healthcare and how to overcome them. I argue that epistemic solidarity can play an important role in overcoming epistemic injustices as well as—and independently from its contribution to justice—in knowledge production in medicine more generally. To demonstrate how epistemic solidarity can add to our understanding of collective knowledge practices, I discuss two examples: patients sharing their medical data for research purposes and healthcare professionals’ engagement with patients to better understand their afflictions. (shrink)

IntroductionThe objectives of this study are to assess and compare differences in the intensity, frequency, and overall severity of moral distress among a diverse group of healthcare professionals.MethodsParticipants from within Baylor Health Care System completed an online seven-point Likert scale (range, 0 to 6) moral distress survey containing nine core clinical scenarios and additional scenarios specific to each participant’s discipline. Higher scores reflected greater intensity and/or frequency of moral distress.ResultsMore than 2,700 healthcare professionals responded to the survey (response (...) rate 18.14 percent); survey respondents represented multiple healthcare disciplines across a variety of settings in a single healthcare system. Intensity of moral distress was high in all disciplines, although the causes of highest intensity varied by discipline. Mean moral distress intensity for the nine core scenarios was higher among physicians than nurses, but the mean moral distress frequency was higher among nurses. Taking into account both intensity and frequency, the difference in mean moral distress score was statistically significant among the various disciplines. Using post hoc analysis, differences were greatest between nurses and therapists.ConclusionsMoral distress has previously been described as a phenomenon predominantly among nursing professionals. This first-of-its-kind multidisciplinary study of moral distress suggests the phenomenon is significant across multiple professional healthcare disciplines. Healthcare professionals should be sensitive to situations that create moral distress for colleagues from other disciplines. Policy makers and administrators should explore options to lessen moral distress and professional burnout that frequently accompanies it. (shrink)

The value of conscience in healthcare ethics is widely debated. While some sources present it as an unquestionably positive attribute, others question both the veracity of its decisions and the effect of conscientious objection on patient access to health care. This paper argues that the right to object conscientiously should be broadened, subject to certain previsos, as there are many benefits to healthcare practice in the development of the consciences of practitioners. While effects such as the preservation of (...) moral integrity are widely considered to benefit practitioners, this paper draws on the work of Hannah Arendt to offer several original arguments in defence of conscience that may more directly benefit patients, namely that a pang of conscience may be useful in rapidly unfolding situations in which there is no time to reflect satisfactorily upon activities and that, given the hierarchical nature of healthcare institutions, a right to defy authority on the basis of conscience may benefit junior staff who lack the institutional power to challenge the orders of superiors. (shrink)

This article focuses on patients' participation in decision‐making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision‐making meetings within a Foucauldian perspective. Patients' participation in decision‐making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective of patients, (...) there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision‐making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision‐making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A ‘projectification’ of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de‐professionalization. In that light, participation of patients in decision‐making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. (shrink)

Muslim physicians and Islamic jurists analyze the moral dimensions of biomedicine using different tools and processes. While the deliberations of these two classes of experts involve judgments about the deliverables of the other's respective fields, Islamic jurists and Muslim physicians rarely engage in discussions about the constructs and epistemic frameworks that motivate their analyses. The lack of dialogue creates gaps in knowledge and leads to imprecise guidance. In order to address these discursive and conceptual gaps we describe the sources of (...) knowledge and reasoning employed by Islamic jurists and clinicians to resolve the question of when a patient must seek healthcare. As we examine both the scriptural evidence and legal reasoning of jurists and the types of medical evidence used by clinicians to address the same question, we draw attention to the epistemic frameworks and constructs at play and identify how constructs from one field may sharpen the deliberative exercises of the other. Hence our work advances discourses at the intersection of Islam and medicine and offers building blocks for a comprehensive Islamic framework that fully integrates the deliverables of medical science within the deliberations of Islamic jurists. (shrink)

Until recently, business issues in healthcare organizations were relatively insulated from clinical issues, for several reasons. The hospital at earlier stages of its development operated on a combination of charitable and equitable premises, allowing for providing care to be separated from financial support. Physicians, who were primarily responsible for clinical care, constituted an independent power nexus within the hospital and were governed by their own professional codes of ethics. In exchange for a great deal of control over their conditions (...) of practice, they took almost complete responsibility for patient care. Thus clinical and professional ethics could to some extent be compartmentalized from the business issues—a much easier feat when, as in much of the last few decades, virtually all care was reimbursed from some source or other. In addition, many HCOs were not categorized or treated as businesses, although of course they were presumed to be governed by the same expectation for good management as any other organization. (shrink)

Phenomenological interviews with queer women in rural Nova Scotia reveal significant forms of trauma experienced during labour and birth. Situating the accounts of participants within both phenomenological and intersectional analyses reveals harms enabled by structurally embedded heteronormative and homophobic healthcare practices and policies. Our account illustrates the breadth and depth of harm experienced and outlines how these violate core ethical principles and values in healthcare.

We explore how principles predicting the success of a medical information commons advantaged or disadvantaged three MIC initiatives in three Canadian provinces. Our MIC case examples demonstrate that practices and policies to promote access to and use of health information can help improve individual healthcare and inform a learning health system. MICs were constrained by heterogenous health information protection laws across jurisdictions and risk-averse institutional cultures. A networked approach to MICs would unlock even more potential for national and international (...) data collaborations to improve health and healthcare. (shrink)

BackgroundThe public’s attitudes to conscientious objection are likely to influence political decisions about CO and trust towards healthcare systems and providers. Few studies examine the pub...

This discussion paper aims to explore potential ethical and moral implications of (patient) centredness in nursing and healthcare. Healthcare is experiencing a philosophical shift from a perspective where the health professional is positioned as the expert to one that re‐centres care and service provision central to the needs and desires of the persons served. This centred approach to healthcare delivery has gained a moral authority as the right thing to do. However, little attention has been given to (...) its moral and ethical theoretical grounding and potential implications for nurses, persons served and the healthcare system. Based upon a review of academic and grey literature, centredness is proposed as a value‐laden concept in nursing inquiry. Potential moral and ethical implications of centredness on nurses/healthcare providers, persons served and the healthcare system are discussed. These challenges are then considered within the context of normative and relational ethical theories. These perspectives may offer guidance relative to how one should act in those circumstances as well as an understanding as to how interdependency and engagement with the other person(s) can help navigate the challenges of a centred care approach. Viewing centredness through an ethical theoretical lens provides a valuable discourse to nursing in efforts to expand the knowledge base and integrate centred approaches into practice and policy. (shrink)

“Chiaroscuro” is a art technique that makes use of light and shade to suggest depth and solidity on a flat surface. I argue that the standards regarding accountability in the second edition of the Core Competencies for Healthcare Ethics Consultation , are chiaroscuro, because, despite the offered lists of competencies, it is very difficult to imagine how consultants might be held accountable to such standards. It is not clear to which of the many suggested standards a consultant should be (...) held accountable, and even if one stipulates that only the tabulated competencies are meant as standards, the vague wording makes it hard to know how a consultant might fail to meet the standards or perform excellently. In addition, because terms such as “ethics” and “ethical” are not defined in the document, we are left with no way to determine whether consultants have made appropriate recommendations. The document is useful as a point of discussion, but not yet ready to serve as a tool for holding practitioners accountable. (shrink)

The amount of data available to healthcare practitioners is growing, and the rapid increase in available patient data is becoming a problem for healthcare practitioners, as they are often unable to fully survey and process the data relevant for the treatment or care of a patient. Consequently, there are currently several efforts to develop systems that can aid healthcare practitioners with reading and processing patient data and, in this way, provide them with a better foundation for decision-making (...) about the treatment and care of patients. There are also efforts to develop algorithms that provide suggestions for such decisions. However, the development of these systems and algorithms raises several concerns related to the privacy of patients, the patient–practitioner relationship, and the autonomy of healthcare practitioners. The aim of this article is to provide a foundation for understanding the ethical challenges related to the development of a specific form of data-processing systems, namely clinical algorithms. (shrink)

The aim of this study was to develop and validate a measure of robot use self-efficacy in healthcare work based on social cognitive theory and the theory of planned behavior. This article provides a briefing on technology-specific self-efficacy and discusses the development, validation, and implementation of an instrument that measures care workers’ self-efficacy in working with robots. The validity evaluation of the Finnish-language measure was based on representative survey samples gathered in 2016. The respondents included practical and registered nurses, (...) homecare workers, and physiotherapists. A majority of the respondents were female. The full instrument consists of a set of six task-specific self-efficacy items concerning general views of technological skills, confidence in learning robot use, and confidence in guiding others in robot use. Three items were chosen for the shorter version of the measure. The face validity, construct validity, and reliability were established to validate the instruments. Both 3-item and 6-item measures were found to be highly consistent in structure. Respondents with high levels of RUSH also reported more general self-efficacy and interest in technology, on average. A very brief instrument of three items is convenient to include in repeated employee surveys. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of (...) capacity is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides (...) a specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

The state subvention and distribution of health care not only jeopardize the financial sustainability of the state, but also restrict without a conclusive rational basis the freedom of patients to decide how much health care and of what quality is worth what price. The dominant biopolitics of European health care supports a healthcare monopoly in the hands of the state and the medical profession, which health care should be opened to the patient’s authority to deal directly for better basic (...) health care. In a world where it is impossible for all to receive equal access to the best of basic health care, one must critically examine the plausible scope of the authority of the state to limit access to better basic health care. Classical distributive justice affords a basis for re-examining the current European ideology of equality, human dignity, and solidarity that supports healthcare systems with unsustainable egalitarian concerns. (shrink)

This chapter discusses imaginary technologies that do not exist yet but are expected to be implemented in clinical work in the near future. Adopting a phenomenological view on the politics of organizational time, we illuminate how the rhetoric of futurity and protentional anticipation dominate managerial acts in healthcare organizations. This future-oriented management includes strategies of risk assessment, investments in emerging technologies, and other actions to reduce external uncertainty and move towards an enhanced capacity to cope with potential challenges. However, (...) we suggest that potentially harmful consequences of emerging technologies cannot be established reliably in advance by investigation, experiments, and risk assessments. The phenomenological notion of embodied information infrastructure allows us to consider how visions of complex technologies intertwine with clinical practices in healthcare professionals’ work. We use two examples of imaginary technologies—automated decision-making systems and care robotics—to concretize how the line between imaginary technologies and existing technologies becomes increasingly volatile in healthcare organizations. (shrink)

Background There is broad international agreement from clinicians and academics that healthcare rationing should be undertaken as explicitly as possible, and the BMA have publicly supported the call for more accountable priority setting for some time. However, studies in the UK and elsewhere suggest that clinicians experience a number of barriers to rationing openly, and the information needs of patients at the point of provision are largely unknown. Methodology In-depth interviews were undertaken with NHS professionals working at the community (...) level of provision, and with patients and professionals receiving or providing treatment for morbid obesity and breast cancer (n=52). Results Nearly all patients wanted to know about healthcare rationing and had high expectations of their clinical professionals to provide all relevant information about treatment options. However, professionals did not always understand these information requirements, and cases of implicit rationing were common. The existence of relevant national guidance was not always known about, meaning that patients were often reliant on other sources of information about treatment options, which included the popular media, the internet, patient advocacy groups and informal networks of support. Discussion Clinical professionals need to understand patients' need for detailed information when it comes to rationing, and to understand that they are the main gateway for this to be provided. However, disclosure could be distressing for both patients and professionals, and thus the most sensitive and acceptable ways to make this information available requires further investigation. (shrink)

Levinas's ethics has in the last decades exerted a significant influence on Nursing and Caring Science. The core of Levinas's ethics – his analyses of how our subjectivity is established in the ethical encounter with our neighbour or the Other – is applied both to healthcare practice and in the project of building an identity of Nursing and Caring Science. Levinas's analyses are highly abstract and metaphysical, and also non‐normative. Thus, his analyses cannot be applied directly to practical problems (...) and questions. Theorists in Nursing and Caring Science are generally aware of this. Nevertheless, many of them use Levinas's analyses to explore and solve questions of practical and normative character. This article focuses on the challenges and dilemmas of using Levinas in this manner.The article is divided into two parts. The first part presents some central ideas of Levinas's ethics based on the latter part of his authorship. The main focus is on the radicalism of Levinas's critique of the symbolic order (which includes concepts, categories, knowledge, etc.) – or as he puts it ‘the said’ – as a basis for subjectivity and responsibility. Levinas's notions of saying, anarchy, and singularity accentuate this point of view. These notions refer to conditions in the language, which counteract the symbolic order in the ethical encounter to such an extent that it becomes an incomprehensible. Levinas gives the argumentation a metaphysical frame: The encounter with the incomprehensible is an encounter with the Holy, which is not the ontological God, but a metaphysical desire. It is a mystery as to what this means, and herein lies possibly the main challenge when using Levinas's ethics in science and research: How to maintain the radicalism of his critique of the symbolic order when this is to be communicated in a scientific context that expects clarification of statements and ideas? The second part of the article explores this question by examining how some theorists use Levinas's ethics on questions and problems in the area of healthcare and Nursing and Caring Science. The focus is especially on the theorists' reception and use of the just mentioned notions. The study reveals that these theorists to a large extent transform Levinas's ethics according to their own approaches, with the result that his ethics loses its critical radicalism. Thus, I question the reason why they use Levinas. (shrink)

The advance in Internet of Things technology has increased the opportunities for a healthcare system design, which is an urgent need owing to the growth in population among the older adults in many countries. This requires giving thought to the kind of innovative technological design methods that can find suitable solutions for home care. The application of Health Smart Homes by means of the technologies of the Internet of Things, can be used to support rehabilitation treatment and help the (...) senior citizens to understand the importance of taking measures to maintain a healthy standard of living that can meet their needs. The aim of this article is to develop and assess a design method for the following purposes: to determine and map out the physical and emotional state of the home care users, such as senior citizens; to implement a participatory design that includes the user within its social, psychological and therapeutic context; to explore the flexible method when applied to older users; to provide a way for the users to be “personalized” through a wide range of solutions that involve analyzing the behavioral patterns of different individuals in a standardized manner and to define a set of smart technologies for each problem and senior citizen. This article sets out a collaborative method called FlexPersonas, which is employed for the flexible mapping of users and to improve decision-making with the support of Internet of Things technologies. In this context, computing systems can identify the behavior of the user and issue warnings to the Carers about any abnormal event. Studies with an interdisciplinary team point out the potential and drawbacks of the method. (shrink)

Dignity is a central value in care for aged adults, and it must be protected and respected. With demographic changes leading to an aging population, health ministries are increasingly investing in digitalization. However, using unfamiliar digital technology can be challenging and thus impact aged adults' dignity and well‐being. The INNOVATEDIGNITY project aims to research new, dignified ways of engaging with aged adults to shape digital developments in care delivery. This qualitative study aimed to explore how innovative digitally‐led healthcare have (...) influenced aged adults' well‐being and dignity through three studies conducted as part of the INNOVATEDIGNITY project: a scoping review, an empirical study and a policy analysis. The three documents were analysed to uncover meanings relevant to the research problem revealing four main themes: the advantages of new technologies in facilitating aged adults' well‐being, the rupture of dignity due to bewilderment in the digital world, aged adults' dignity is affected by their worries about human face of care being replaced by technology and preserving aged adults' dignity in digitally‐led healthcare. Digitalization in healthcare impacts aged adults' well‐being as providing new opportunities for care, but preserving aged adults' dignity when working with unfamiliar digital innovations is challenging. Aged adults need to be informed about the use of technology in their care and supported to develop the necessary digital skills to better adapt to digitally‐led healthcare. The circumstances, conditions and needs of individuals should remain central when implementing new technologies in healthcare settings in a dignified way. (shrink)

Self‐care, or self‐management, is presented in healthcare policy as a precursor to patient empowerment and improved patient outcomes. Alternatively, critiques of the self‐care agenda suggest that it represents an over‐reliance on individual autonomy and responsibility, without adequate support, whereby ‘self‐care’ is potentially unachievable and becomes ‘care left undone’. In this sense, self‐care contributes to a blame culture where ill‐health is attributed to personal behaviours or lack thereof. Furthermore, self‐care may represent a covert form of rationing, as the fiscal means (...) to enable effective self‐care and supplement, or replace, self‐care capacities, is not provided. This paper explores these arguments through a contemporary ethical analysis of the self‐care agenda. The terms self‐care and self‐management are used interchangeably throughout whereby self‐management is understood as a point in the wider self‐care continuum. (shrink)

As genetic testing for the presence of potentially health-affecting mutations becomes available for more genetic conditions, many people will soon be faced with the decision of whether or not to have a genetic test. Making an informed decision requires an understanding and evaluation of the arguments for and against having the test. As a case in point, this paper considers argumentation involving the decision of whether to have a BRCA gene test, one of the first commercially available genetic tests. First, (...) argumentation in a five-page patient brochure from a for-profit company that provides BRCA gene testing, is analyzed. Next, for comparison, argumentation on BRCA testing in materials for healthcare consumers written by a not-for-profit health plan and a government organization, is analyzed. In view of the challenges identified by considering these examples, this article discusses how argumentation-oriented computer systems may be able to help the healthcare consumer to make informed decisions about genetic testing. (shrink)

Good listening is an essential element in the provision of quality healthcare (Attree 2001). Good listening also supports accurate diagnosis, patient adherence to medical recommendations, and stron...

In this paper we argue that austerity creates working conditions that can undermine professionalism in healthcare. We characterise austerity in terms of overlapping economic, social and ethical dimensions and explain how these can pose significant challenges for healthcare professionals. Amongst other things, austerity is detrimental to healthcare practice because it creates shortages of material and staff resources, negatively affects relationships and institutional cultures, and creates increased burdens and pressures for staff, not least as a result of deteriorating (...) public health conditions. After discussing the multiple dimensions of austerity, we consider the challenges it creates for professional ethics in healthcare. We highlight three mechanisms—intensification of work, practitioner isolation, and organisational alienation—which pose acute problems for healthcare professionals working under conditions of austerity. These mechanisms can turn ‘routine moral stress’ into moral distress and, at the same time, make poor care much more likely. While professionalism clearly depends on individual capabilities and behaviours, it also depends upon a complex sets of social conditions being established and maintained. The problems caused by austerity reveal a need to broaden the scope of professional ethics so that it includes the responsibilities of ‘role constructors’ and not just ‘role occupiers’. Austerity therefore presents opportunities for health professionals and associated ‘role constructors’ to contribute to a reimagining of future models of healthcare professionalism. (shrink)

In this issue of Narrative Inquiries in Bioethics, fat individuals share their healthcare experiences. Through reading the narratives, it becomes clear that access to proper healthcare is often blocked for fat patients by a variety of things, including shame and fat stigma. From physical spaces in which they do not fit, to doctors who diagnose all of their problems as ‘fat’, similar themes are echoed across the stories. And common are the refrains for better treatment, less shame, and (...) access to evidenced based care from educated providers. In this manuscript, I highlight common themes from the stories and integrate them with themes from the literature. I allow the two dissenting narratives to suggest other ways of thinking about fatness and well–being. And I conclude by suggesting ways to provide better access to quality healthcare for fat individuals. (shrink)

In emergencies and disasters, ethics are affected by both personal and organizational factors. Given the lack of organizational ethical guidelines in the disaster management system in Iran, the present study was conducted to explain the personal factors affecting ethics and ethical behaviors among disaster healthcare workers. The present qualitative inquiry was conducted using conventional content analysis to analyze the data collected from 21 in-depth unstructured interviews with healthcare workers with an experience of attending one or more fields of (...) disaster. According to the data collected, personal factors can be classified into five major categories, including personal characteristics such as age and gender, personal values, threshold of tolerance, personal knowledge and reflective thinking. Without ethical guidelines, healthcare workers are intensely affected by the emotional climate of the event and guided by their beliefs. A combination of personal characteristics, competences and expertise thus form the basis of ethical conduct in disaster healthcare workers. (shrink)

Recent labor disputes between registered nurses and hospitals in Minnesota, California, and Pennsylvania raise moral questions about nurses’ professional obligations, nurses’ right to collectively bargain to preserve or improve wages, benefits, and working conditions, and patients’ right to medical care. Deontology and consequentialism focus too narrowly on nurses and patients, and thus ignore the nature of the healthcare community as a system of competing interests. When considered in this context, nurses’ strikes are shown to be consistent with this system (...) of competing interests, and thus are morally permissible. (shrink)

This paper is an empirical study of what solidarity in a Western European healthcare system means today. Drawing upon empirical research on the 2015 refugee cohort's health needs and their health-seeking behaviour, it unites claims from the literature on solidarity in the fields of migration and healthcare. I argue that the Austrian healthcare system not only is an example of ‘civic solidarity’ in the form of institutionalised obligations to citizens but that it also enacts political forms of (...) solidarity and produces political inclusion for marginalised groups such as refugees. My findings show that being entitled to and accessing services in the healthcare system holds meaning beyond the provision of care: It enables to act autonomously, to build familiar relationships with Austrian institutions, inclusion via the personal electronic health card and to support others in the same solidaristic system. These insights can be used to raise awareness about the inclusional function of healthcare services among practitioners. They also show how solidarity-based healthcare systems can be a motor for shaping positive relationships between immigrants and the host country, and point to additional modes of solidarity in the context of forced migration next to civil society and nonstate support structures. This paper builds upon ethnographic data that were collected between 2018 and 2020 in Vienna, Austria (observational notes before, during and after medical consultations with refugees; interviews with them; interviews with healthcare practitioners and other care providers). (shrink)

One prominent view in recent literature on resource allocation is Persad, Emanuel and Wertheimer’s complete lives framework for the rationing of lifesaving healthcare interventions (CLF). CLF states that we should prioritise the needs of individuals who have had less opportunity to experience the events that characterise a complete life. Persadet alargue that their system is the product of a successful process of reflective equilibrium—a philosophical methodology whereby theories, principles and considered judgements are balanced with each other and revised until (...) we achieve an acceptable coherence between our various beliefs. Yet I argue that many of the principles and intuitions underpinning CLF conflict with each other, and that Persadet alhave failed to achieve an acceptable coherence between them. I focus on three tensions in particular: the conflict between the youngest first principle and Persadet al’s investment refinement; the conflict between current medical need and a concern for lifetime equality; and the tension between adopting an objective measure of complete lives and accommodating for differences in life narratives. (shrink)

Many ethicists argue that we should respect persons when we distribute resources. Yet it is unclear what this means in practice. For some, the idea of respect for persons is synonymous with the idea of respect for autonomy. Yet a principle of respect for autonomy provides limited guidance for how we should distribute scarce medical interventions. In this article, however, I sketch an alternative conception of respect for persons—one that is based on an ethic of mutual accountability. I draw in (...) particular upon Stephen Darwall’s writings on respect and the second-person standpoint. I consider the implications of this conception of respect for the distribution of scarce, lifesaving healthcare resources. A second-personal account of respect rules out aggregative approaches to distribution, and instead requires that we give individual consideration to the claims that persons in need make on the resources in our control. The principles that we use to govern our allocation of resources, furthermore, should be principles that are acceptable to all reasonable agents. Building on this insight, the final section of this paper considers how a principle of need can be used as a means to make decisions about the allocation of lifesaving resources. -/- . (shrink)

The book provides a detailed introduction to a major debate in bioethics, as well as a rigorous account of the role of conscience in professional decision-making. Exploring the role of conscience in healthcare practice, this book offers fresh counterpoints to recent calls to ban or severely restrict conscience objection. It provides a detailed philosophical account of the nature and moral import of conscience, and defends a prima facie right to conscientious objection for healthcare professionals. The book also has (...) relevance to broader debates about religious liberty and civil rights, such as debates about the rights and duties of persons and institutions who refuse services to clients on the basis of a religious objection. The book concludes with a discussion of how to regulate individual and institutional conscientious objection, and presents general principles for the accommodation of individual conscientious objectors in the healthcare system. This book will be of value to students and scholars in the fields of moral philosophy, bioethics and health law. (shrink)

The pipeline framework for identifying ethical issues in machine learning healthcare applications outlined by Char et al. is a very useful starting point for the systematic consideration...

BackgroundThe clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the early detection of abnormalities, NIPT expanded rapidly and the test is currently commercially available in most of the world. As NIPT is being introduced globally, its clinical implementation should consider various challenges, including the role of the surrounding social and cultural contexts. We conducted a qualitative study with healthcare professionals in (...) Lebanon and Quebec as case studies, to highlight the relevance of cultural contexts and to explore the concerns that should be taken into account for an ethical implementation of NIPT.MethodsWe conducted semi-structured interviews with 20 healthcare professionals (HCPs), 10 from each country, practicing in the field of prenatal screening and follow up diagnostic testing, including obstetricians and gynecologists, nurses, medical geneticists and, genetic counselors. We aimed to 1) explore HCPs’ perceptions and views regarding issues raised by NIPT and 2) to shed light on ways in which the introduction of the same technology (NIPT) in two different contexts (Lebanon and Quebec) raises common and different challenges that are influenced by the cultural norms and legal policies in place.ResultsWe identified challenges to the ethical implementation of NIPT. Some are common to both contexts, including financial/economic, social, and organizational/ educational challenges. Others are specific to each context. For example, challenges for Lebanon include abortion policy and financial profit, and in Quebec challenges include lobbying by Disability rights associations and geographical access to NIPT.ConclusionsOur findings highlight the need to consider specific issues related to various cultural contexts when developing frameworks that can guide an ethically sound implementation of NIPT. Further, they show that healthcare professional education and training remain paramount in order to provide NIPT counseling in a way that supports pregnant women and couples’ choice. (shrink)

ponsibilities compounds these challenges. This article presents an overview of research and standards of practice regarding children's participation in research and healthcare decisions. Further research on children's competence to participate in healthcare decisions is recommended. Reasons for and against children's increased involvement in healthcare decisions are included. There is a preponderance of support for involving children in the process, and a dearth of well-articulated reasons to exclude them....

Background Policy instruments based on the working of markets have been introduced to empower consumers of healthcare. However, it is still not easy to become a critical consumer of healthcare. Objectives The aim of this study is to analyse the possibilities of the state to strengthen the position of patients with the aid of a new financial regime, such as personal health budgets. Methods Data were collected through in-depth interviews with executives, managers, professionals and client representatives of six (...) long-term care institutions. Results With the introduction of individual budgets the responsibility for budgetary control has shifted from the organisational level to the individual level in the caregiver-client relationship. Having more luxurious care on offer necessitates a stronger demarcation of regular care because organisations cannot simultaneously offer extra care as part of the standard care package. New financial instruments have an impact on the culture of receiving and giving care. Distributive justice takes on new meaning with the introduction of financial market mechanisms in healthcare; the distributing principle of ‘need’ is transformed into the principle of ‘economic demand’. Conclusion Financial instruments not only act as a countervailing power against providers insufficiently client-oriented, but are also used by providers to reinforce their own positions vis-à-vis demanding clients. Tailor-made finance is not the same as tailor-made care. (shrink)