In their article “A Research Ethics Framework for the Clinical Translation of Healthcare Machine Learning,” McCradden et al. highlight the various gaps that emerge when artificial intelligen...

Within contemporary health care, many of the decisions affecting the health and well-being of patients are not being made by the clinicians or health professionals, but by those involved in health care management. Existing literature on organizational ethics provides insight into the various structures, processes and strategies - such as mission statement, ethics committees, ethical rounds … - that exist to create an organizational climate, which fosters ethical practices and decision-making It does not, however, show how health care managers experience (...) their job as being intrinsically ethical in itself. In the present article, we investigate the way in which ethical values are present in the lived experiences and daily practice of health care management. What does it imply to take up a managing position within a health care institution and to try to do this in an ethically inspired way? We carried out a qualitative study (Grounded Theory Approach) to explore the essence of values-based leadership in health care. We interviewed 15 people with extensive experience in health care management in the fields of elderly care, hospital care and mental health care in the various regions of Flanders, Belgium. Six predominant themes, presented as metaphors, illustrate the essence of values-based leadership in health care management. These are: (1) values-based health care management as managing a large garden, (2) as learning and using a foreign language, (3) going on a trekking with an ethical compass, (4) embodying integrity and authenticity in a credible encounter with everyone, (5) being a present and trustworthy leader during sun and storm, and (6) contributing to human flourishing by giving people wings to fly. Notwithstanding the importance of organizing a good ethics infrastructure, values-based leadership in health care entails much more than that. It is about the co-creation of an integrated and comprehensive ethical climate of which community-model thinking and authentic leadership are essential components. As a never-ending process, the six metaphors can help leaders to take substantive proactive steps to shape a fruitful ethical climate within their organization. (shrink)

The Belgian Act on Euthanasia came into force on 23 September 2002, making Belgium the second country—after the Netherlands—to decriminalize euthanasia under certain due-care conditions. Since then, Belgian nurses have been increasingly involved in euthanasia care. In this paper, we report a qualitative study based on in-depth interviews with 18 nurses from Flanders (the Dutch-speaking part of Belgium) who have had experience in caring for patients requesting euthanasia since May 2002 (the approval of the Act). We found that the care (...) process for patients requesting euthanasia is a complex and dynamic process, consisting of several stages, starting from the period preceding the euthanasia request and ending with the aftercare stage. When asked after the way in which they experience their involvement in the euthanasia care process, all nurses described it as a grave and difficult process, not only on an organizational and practical level, but also on an emotional level. “Intense” is the dominant feeling experienced by nurses. This is compounded by the presence of other feelings such as great concern and responsibility on the one hand, being content in truly helping the patient to die serenely, and doing everything in one’s power to contribute to this; but also feeling unreal and ambivalent on the other hand, because death is arranged. Nurses feel a discrepancy, because although it is a nice death, which happens in dignity and with respect, it is also an unnatural death. The clinical ethical implications of these findings are discussed. (shrink)

Hojjat Soofi successfully developed a novel dementia-specific model of human flourishing.1 Based on a modified version of Nussbaum’s account of dignity (ie, the theoretical framework of the capabilities approach), and integrated with Kitwood and Bredin’s empirically informed list of indicators of well-being for people with dementia (ie, the field of empirically informed ethics), this model provides guidance on how to actually care for people with dementia in real-life practices, according to the moral requirements of respect for dignity. More specifically, we (...) deem the contributive value of the model to be threefold. (1) It is a successful specification and contextualisation of Nussbaum’s original list of capabilities in the context of dementia care. (2) The table clearly distinguishes between dementia-specific capabilities and their possibly dementia-related progressive deprivation (ie, the internal conditions), and the possible external setbacks or facilitators for human flourishing. (3) The model is proposed as being open to include new and additional insights from further empirical research on what forms of caregiving do (or do not) align with respect for the dignity of people with dementia. In our commentary, we want to focus on the source of dignity, that is, the locus and starting point of our moral requirements on which the author takes an explicit stance. First of all, by being founded on the list of dementia-specific capabilities, Soofi’s model places the source of our moral requirements of respect for the dignity of people with dementia within the persons themselves, ‘having some of the basis capabilities listed’ (p.6). This, in turn, brings classic discussions concerning a …. (shrink)

Does a human right to healthcare imply individual obligations to healthy behavior? Or put another way: Is a self-induced condition a relevant criterion for some sort of restriction of this right—like withholding or modifying treatment in circumstances where choices have to be made? For instance, should a drunk driver bear the costs of medical care that he needs after a car accident he has caused? Should there be a difference in healthcare entitlements between the smoker with a heart attack who (...) is seriously overweight and the 60-year old man who has always taken excellent care of himself and is suddenly stricken by leukemia? And how should we think about the risk-taking behavior of all the persons going on a skiing holiday or an exotic hiking trip? a. (shrink)

BackgroundIn our globalizing world, caregivers are increasingly being confronted with the challenges of providing intercultural healthcare, trying to find a dignified answer to the vulnerable situation of ethnic minority patients. Until now, international literature lacks insight in the intercultural care process as experienced by the ethnic minority patients themselves. We aim to fill this gap by analysing qualitative literature on the intercultural care encounter in the hospital setting, as experienced by ethnic minority patients.MethodsA systematic search was conducted for papers published (...) between 2000 and 2015. Analysis and synthesis were guided by the critical interpretive synthesis approach.ResultsFifty one articles were included. Four dimensions emerged, describing the intercultural care encounter as a meeting of two different cultural contexts of care, in a dynamic and circular process of balancing between the two cultural contexts, which is influenced by mediators as concepts of being human, communication, family members and the hospital’s organizational culture.ConclusionsThis review provides in-depth insight in the dynamic process of establishing intercultural care relationships in the hospital. We call for a broader perspective towards cultural sensitive care in which patients are cared for in a holistic and dignity-enhancing way. (shrink)

In this paper, a personalist ethical perspective on end-of-life care of severely ill newborns is presented by posing two questions. (1) Is it ethically justified to decide not to start or to withdraw life-sustaining treatment in severely ill newborns? (2) Is it ethically justified, in exceptional cases, to actively terminate the life of severely ill newborns? Based on five values—respect for life and for the dignity of the human person, quality of life, respect for the process of dying, relational autonomy, (...) and justice—an ethical assessment is conducted that brings us answers to the two ethical questions. (1) Noninitiation or withdrawal of life-sustaining medical treatment in severely ill newborns is ethically acceptable, and might even be a moral duty, when initiation or continuation of medical treatment can be considered futile or even harmful. (2) However, according to the personalist approach, it is not ethically acceptable to actively terminate the life of a severely ill newborn. (shrink)

For a significant number of patients, there exists no, or only little, interest in developing a treatment for their disease or condition. Especially with regard to rare diseases, the lack of commercial interest in drug development is a burning issue. Several interventions have been made in the regulatory field in order to address the commercial disinterest in these conditions. However, existing regulations mainly focus on the provision of incentives to the sponsors of clinical trials of orphan drugs, and leave unanswered (...) the overarching question about the rightful place of orphan drugs in resource allocation systems. In this article, we analyse the ethical aspects of funding research and development in the field of rare diseases. We then propose an ethical framework that can help health policy makers move forward in the difficult matter of fairly allocating resources for the prevention, diagnosis and treatment of rare diseases. (shrink)

This book offers a thorough reflection on the relationship between autonomy and paternalism, and argues that, from both theoretical and practical angles, the ...

The concept of benefit sharing pertains to the act of giving something in return to the participants, communities, and the country that have participated in global health research or bioprospecting activities. One of the key concerns of benefit sharing is the ethical justifications or reasons to support the practice of the concept in global health research and bioprospecting. This article evaluates one of such ethical justifications and its meaning to benefit sharing, namely justice. We conducted a systematic review to map (...) the various principles of justice that are linked to benefit sharing and analysed their meaning to the concept of benefit sharing. Five principles of justice have been shown to be relevant in the nuances of benefit sharing in both global health research and bioprospecting. The review findings indicate that each of these principles of justice provides a different perspective for a different benefit sharing rationale. For example, commutative justice provides a benefit sharing rationale that is focused on fair exchange of benefits between research sponsors and communities. Distributive justice produces a benefit sharing rationale that is focused on improving the health needs of the vulnerable research communities. We have suggested that a good benefit sharing framework particularly in global health research would be more beneficial if it combines all the principles of justice in its formulation. Nonetheless, there is a need for empirical studies to examine the various principles of justice and their nuances in benefit sharing among stakeholders in global health research. (shrink)

This paper addresses two ways in which scarcity in health care turns up and three ways in which this dual condition of scarcity can be approached. The first approach is the economic approach, which focuses on the causes of cost-increase in health care and on developing various mechanisms of rationing and priority-setting in health care. The second approach is the justice approach, which interprets scarcity as one of the Humean ‹Circumstances of Justice.’ Whereas these approaches interpret scarcity as a given (...) fact, the third approach casts doubt on this interpretation. Rather, it interprets scarcity as a social, anthropological, and technologically induced construction of Modernity. This paper supports the theories of Hans Achterhuis, Ivan Illich, and Nicholas Xenos but also further elaborates their views with regard to health care by offering an approach to scarcity that interprets it as an economic translation of finitude. I argue that this approach, which entails a contemporary revaluation of the ancient Socratic attitude on human life and finitude, will be better able to deal with the pressing contemporary issues of setting limits on health care because it mitigates contemporary health care’s tendency toward infinity in meeting – and creating – health care needs. (shrink)

Amsterdam University Press is a leading publisher of academic books, journals and textbooks in the Humanities and Social Sciences. Our aim is to make current research available to scholars, students, innovators, and the general public. AUP stands for scholarly excellence, global presence, and engagement with the international academic community.

In this book, an international group of philosophers, economists and theologians focus on the relationship between justice, luck and responsibility in health care. Together, they offer a thorough reflection on questions such as: How should we understand justice in health care? Why are health care interests so important that they deserve special protection? How should we value health? What are its functions and do these make it different from other goods? Furthermore, how much equality should there be? Which inequalities in (...) health and health care are unfair and which are simply unfortunate? Which matters of health care belong to the domain of justice, and which to the domain of charity? And to what extent should we allow personal responsibility to play a role in allocating health care services and resources, or in distributing the costs? With this book, the editors meet a double objective. First, they provide a comprehensive philosophical framework for understanding the concepts of justice, luck and responsibility in contemporary health care; and secondly, they explore whether these concepts have practical force to guide normative discussions in specific contexts of health care such as prevention of infectious diseases or in matters of reproductive technology. Particular and extensive attention is paid to issues regarding end-of-life care. (shrink)

This paper explores the significative structure and normative quality of the child wish by focusing on the concepts that are used when people speak about it. Does having children belong to the category of human needs, or is it rather something that people desire? The Principle of Precedence holds that needs tend to have a substantially greater moral impact than desires. In order to do justice both to people’s profound happiness that goes with fulfilment of the child wish and to (...) the great distress that goes with involuntary childlessness it seems to be right then to argue that having children belongs to the category of human needs; and to use the term from Harry Frankfurt, to the category of constrained volitional needs. Accordingly, it might be argued that society has a rights-based duty to prevent involuntary childlessness. Contrary to this, I defend the thesis that an ethics of desire, which conceives the child wish as rooted in a symbolic desire, leads to a more adequate understanding of the child wish in all its various phenomenological aspects. (shrink)

This paper explores the significative structure and normative quality of the child wish by focusing on the concepts that are used when people speak about it. Does having children belong to the category of human needs, or is it rather something that people desire? The Principle of Precedence holds that needs tend to have a substantially greater moral impact than desires. In order to do justice both to people’s profound happiness that goes with fulfilment of the child wish and to (...) the great distress that goes with involuntary childlessness it seems to be right then to argue that having children belongs to the category of human needs; and to use the term from Harry Frankfurt, to the category of constrained volitional needs. Accordingly, it might be argued that society has a rights-based duty to prevent involuntary childlessness. Contrary to this, I defend the thesis that an ethics of desire, which conceives the child wish as rooted in a symbolic desire, leads to a more adequate understanding of the child wish in all its various phenomenological aspects. (shrink)

Public-health measures are very effective and efficient means of improving health, yet public health is either neglected by the literature or fraught with unease, mainly due to the combination of the aggregate-distributive tension with the element of compulsion.The author argues that this unease can be decreased by 1) a pluralist-holistic view of health, situating the normative value of health in its effect on well-being, incorporating both the objective and subjective source of the value of health; and 2) by a rich (...) concept of reciprocity.This article supports Martha Nussbaum’s critique of social-contract thinking for placing too much weight on the scale of normal functioning and productive reciprocity, as well as Sen’s distinction between well-being and agency freedom.To reach an adequate understanding of the value and goal of public health within the general setting of health care, a pluralist conception of health, well-being and reciprocity is necessary. (shrink)

Objectives To describe the form and content of ethics policies on euthanasia in Flemish nursing homes and to determine the possible influence of religious affiliation on policy content. Methods Content analysis of euthanasia policy documents. Results Of the 737 nursing homes we contacted, 612 (83%) completed and returned the questionnaire. Of 92 (15%) nursing homes that reported to have a euthanasia policy, 85 (92%) provided a copy of their policy. Nursing homes applied the euthanasia law with additional palliative procedures and (...) interdisciplinary deliberations. More Catholic nursing homes compared to non-Catholic nursing homes did not permit euthanasia. Policies described several phases of the euthanasia care process as well as involvement of caregivers, patients, and relatives; ethical issues; support for caregivers; reporting; and procedures for handling advance directives. Conclusion Our study revealed that euthanasia requests from patients are seriously considered in euthanasia policies of nursing homes, with great attention for palliative care and interdisciplinary cooperation. (shrink)

Innovations permeate healthcare settings on an ever-increasing scale. Health technology innovations impact our perceptions and experiences of health, care, disease, etc. Because of the fast pace these HTIs are being introduced in different healthcare settings, there is a growing societal consensus that these HTIs need to be governed by ethical reflection. This paper reports a systematic review of argument-based literature which focused on articles reporting on ethical frameworks to screen or evaluate HTIs. To do this a four step methodology was (...) followed: Literature search conducted in five electronic literature databases; Identification of relevant articles; Development of data-extraction tool to analyze the included articles; Analysis, synthesis of data and reporting of results. Fifty-seven articles were included, each reporting on a specific ethical framework. These ethical frameworks existed out of characteristics which were grouped into five common ones: Motivations for development and use of frameworks; Objectives of using frameworks; Specific characteristics of frameworks ; Ethical approaches and concepts used in the frameworks; Methods to use the frameworks. Although this multiplicity of ethical frameworks shows an increasing importance of ethically analyzing HTIs, it remains unclear what the specific role is of these analyses. An ethics of caution, on which ethical frameworks rely, guides HTIs in their design, development, implementation, without questioning their technological paradigm. An ethics of desirability questions this paradigm, without guiding HTIs. In the end, a place needs to be found in-between, to critically assess HTIs. (shrink)