All articles in May 2019’s special issue of Bioethics offer profound insights into the issue of “being a burden to others” in relation to wishes to die, which are highly relevant for ethical debates about end‐of‐life care and physician‐assisted dying. In this reply, we wish to stress the importance of acknowledging and analyzing the sociopolitical context of the phenomenon “being a burden” in relation to wishes to die and we will show how this analysis could benefit (...) from a care ethical approach. As discussions in care ethics have made clear, caring practices are both social and political practices. An empirical and ethical analysis of “being a burden” therefore needs to take institutional and societal norms and structures into account, in addition to first‐person experiences and concepts such as caring needs, relational autonomy, and interdependency. Besides the relevance of the sociopolitical context for the phenomenon “being a burden” as such, the sociopolitical context also seems relevant for the investigation of the phenomenon, which we will illustrate by reflecting on “being a burden” in relation to the practice of physician‐assisted dying in the Netherlands. (shrink)

Ewing, Selena R Sometimes we find a question in bioethics that seems so mundane and common that nobody cares to consider it, and yet it has no easy answer. The question of my current research project is this. When an elderly person, perhaps your parent or your patient, says 'I don't want to be a burden,' what do they mean and how should we respond?

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational (...) phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others. A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has (...) worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide. The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others. A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has (...) worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide. The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others. A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has (...) worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide. The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

Ewing, Selena R Sometimes we find a question in bioethics that seems so mundane and common that nobody cares to consider it, and yet it has no easy answer. The question of my current research project is this. When an elderly person, perhaps your parent or your patient, says 'I don't want to be a burden,' what do they mean and how should we respond?

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, (...) critics claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective. (shrink)

Ein Argument gegen die ärztliche Beihilfe zum Suizid lautet, Patienten könnten sich um Suizidassistenz bemühen, weil sie sich als Belastung empfinden. Dabei wird die Selbstbestimmtheit eines so motivierten Todeswunsches in Frage gestellt. Ist dieses Argument überzeugungskräftig? Empirische Daten zeigen, dass die ärztliche Beihilfe zum Suizid auf der Grundlage dieses Motivs den ethischen Prinzipien der Sorge um das Patientenwohl und des Respekts vor der Autonomie des Patienten nicht widersprechen muss. Denn das Empfinden, anderen zur Last zu fallen, kann trotz adäquater palliativmedizinischer (...) Betreuung wesentlich zu einem Leidensdruck am Lebensende beitragen. Zudem ist dieses Motiv eng verknüpft mit der Sorge um das Wohl der Angehörigen, die einer erheblichen Belastungssituation ausgesetzt sein können. Da aber das Wohlergehen der Familie zu den elementaren Werten von schwerstkranken Patienten am Lebensende gehört, kann der Wunsch nach ärztlicher Beihilfe zum Suizid auch auf der Basis dieses Motivs Ausdruck eines selbstbestimmten Patientenwillens sein. Andererseits korreliert das Empfinden, anderen zur Last zu fallen, mit einer depressiven Verstimmung. Dieser Zusammenhang ist deshalb relevant, da bei depressiven Störungen eine Einschränkung der Selbstbestimmungsfähigkeit vorliegen kann. Vor diesem Hintergrund sind Zweifel an der Selbstbestimmtheit eines so motivierten Sterbewunsches durchaus begründet. Aufgrund des bestehenden Wissensdefizits bei der Feststellung der Selbstbestimmungsfähigkeit ist die Mitwirkung des Arztes bei einem so motivierten Todeswunsch daher ethisch fragwürdig. (shrink)

Ein Argument gegen die ärztliche Beihilfe zum Suizid lautet, Patienten könnten sich um Suizidassistenz bemühen, weil sie sich als Belastung empfinden. Dabei wird die Selbstbestimmtheit eines so motivierten Todeswunsches in Frage gestellt. Ist dieses Argument überzeugungskräftig? Empirische Daten zeigen, dass die ärztliche Beihilfe zum Suizid auf der Grundlage dieses Motivs den ethischen Prinzipien der Sorge um das Patientenwohl und des Respekts vor der Autonomie des Patienten nicht widersprechen muss. Denn das Empfinden, anderen zur Last zu fallen, kann trotz adäquater palliativmedizinischer (...) Betreuung wesentlich zu einem Leidensdruck am Lebensende beitragen. Zudem ist dieses Motiv eng verknüpft mit der Sorge um das Wohl der Angehörigen, die einer erheblichen Belastungssituation ausgesetzt sein können. Da aber das Wohlergehen der Familie zu den elementaren Werten von schwerstkranken Patienten am Lebensende gehört, kann der Wunsch nach ärztlicher Beihilfe zum Suizid auch auf der Basis dieses Motivs Ausdruck eines selbstbestimmten Patientenwillens sein. Andererseits korreliert das Empfinden, anderen zur Last zu fallen, mit einer depressiven Verstimmung. Dieser Zusammenhang ist deshalb relevant, da bei depressiven Störungen eine Einschränkung der Selbstbestimmungsfähigkeit vorliegen kann. Vor diesem Hintergrund sind Zweifel an der Selbstbestimmtheit eines so motivierten Sterbewunsches durchaus begründet. Aufgrund des bestehenden Wissensdefizits bei der Feststellung der Selbstbestimmungsfähigkeit ist die Mitwirkung des Arztes bei einem so motivierten Todeswunsch daher ethisch fragwürdig. (shrink)

Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta‐ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social (...) dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients’ personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care. (shrink)

In response to the growing social discontent at what is perceived as generational injustice, due to younger generations of voters facing long-term negative consequences from issues disproportionately decided by the votes of older generations of voters, there have been suggestions to introduce an upper age voting threshold. These have been all but universally dismissed as offensive and contrary to basic democratic values. In the present article, I show that the idea is in fact entirely consonant with present-day democratic practices and (...) far from without a precedent. Hence, I describe how the aforementioned generational injustice can be rectified using a simple vote weighting scheme which is easy to implement and interpret. Lastly, I discuss the societal effects that this alteration of the voting system would have on the distribution of the origins of political power. (shrink)

Gossip is often serious business, not idle chitchat. Gossip allows those oppressed to privately name their oppressors as a warning to others. Of course, gossip can be in error. The speaker may be lying or merely have lacked sufficient evidence. Bias can also make those who hear the gossip more or less likely to believe the gossip. By examining the social functions of gossip and considering the differences in power dynamics in which gossip can occur, we contend that gossip may (...) be not only permissible but virtuous, both as the only reasonable recourse available and as a means of resistance against oppression. (shrink)

Objectives To evaluate whether the requirement of “minimal risk and burden” for paediatric research without direct benefit to the subjects compromises the ability to obtain data necessary for improving paediatric care. To provide evidence-based reflections on the EU recommendation that allows for a higher level of risk. Design and setting Systematic analysis of the approval/rejection decisions made by the Dutch Central Committee on Research involving Human Subjects (CCMO). Review methods The analysis included 165 proposals for paediatric research without direct (...) benefit that were reviewed by the CCMO between January, 2000, and July, 2007. A separate, in-depth analysis of all drug studies included 18 early phase drug studies and nine other drug studies without direct benefit. Results 11 out of 165 studies were definitively rejected because the CCMO did not regard the risk and/or burden to be minimal. In three of these 11 cases (including two early phase drug studies) the requirement of minimal risk and burden was cited as the only reason for rejection. Four other early phase drug studies also involved risks and/or burdens that were not regarded to be minimal but were nevertheless approved. Conclusions The requirement of minimal risk and burden, aiming to protect research subjects, occasionally leads to rejection of protocols. Early phase drug studies relatively often do not comply with the requirement. Committees may find ways to approve important studies that formally should be rejected, but that is not a desirable solution. The regulatory framework should be revised to make such occasional exceptions to the requirement legitimate and transparent. (shrink)

In some recent cases in Anglo-American law juries ruled contrary to an expert's testimony even though that testimony was never challenged, contradicted or questioned in the trial. These cases are shown to raise some theoretical questions about formal dialogue systems in computational dialectical systems for legal argumentation of the kind recently surveyed by Bench-Capon (1997) and Hage (2000) in this journal. In such systems, there is a burden of proof, meaning that if the respondent questions an argument, the proponent (...) is obliged to offer some support for it give it up. But what should happen in a formal system of dialogue if the proponent puts forward an argument and the respondent fails to critically question it, and simply moves on to another issue? Is this some kind of fault that should have implications? Should it be taken to imply that, by default, the respondent has conceded the argument? What, if anything, should be the outcome of such a failure to question in a formal dialogue system of argumentation? These questions are considered by examining some legal cases of expert opinion testimony in relation rules for formal dialectical argumentation systems. (shrink)

Confucianism demands that individuals comport themselves according to the strictures of ritual propriety—specific forms of speech, clothing, and demeanor attached to a vast array of life circumstances. This requires self-regulation, a cognitive resource of limited supply. When this resource is depleted, a person can experience undesirable consequences such as social isolation and alienation. However, one’s cultural background may be an important mediator of such costs; East Asians, in particular, seem to have comparatively greater self-regulatory strength. I offer some considerations as (...) to why this may be so, and what insights it may afford to theories of virtue generally. (shrink)

THIS ESSAY FIRST PRESENTS GENERAL GUIDELINES FOR INTERPRETING magisterial documents using Lumen gentium's triple criteria of considering the character, manner, and frequency of magisterial teaching in order to better determine its relative authority and weight. Next, these criteria are applied to a close reading of Pope John Paul Il's various documents that deal with end-of-life issues, especially his controversial March 2004 address to the participants in the International Congress on Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas. This (...) analysis concludes that the pope did not in fact assert that artificial hydration and nutrition had to be used in virtually every medical case, such as patients diagnosed to be in a persistent vegetative state. (shrink)

As they age, many people are afraid that they might become a burden to their families and friends. In fact, fear of being a burden is one of the most frequently cited reasons for individuals who request physician aid in dying. Why is this fear so prevalent, and what are the issues underlying this concern? I argue that perceptions of individual autonomy, dependency, and dignity all contribute to the fear of becoming a burden. However, this fear (...) is misplaced; common conceptions of these values should be re-framed and re-examined. Practices that support a more community-centered type of autonomy can be found in dependency and dignity. This paper offers some practical examples of how to address common end-of-life situations that may cause anxiety to patients who are worried about being a burden. These practices include discussing expectations, both for care and how the relationship among the participants might change, and modeling respectful caregiving behaviors. Most difficult of all, though, includes cultural and societal attitude changes so that people recognize the good in receiving care and get used to the idea that they do not need to do anything to be valuable. (shrink)

Working as clinical ethicists in an academic hospital, we find that practitioners tend to take a principle‐based approach to moral dilemmas when it comes to (not) treating patients who feel like a burden, in which respect for autonomy tends to trump other principles. We argue that this approach insufficiently deals with the moral doubts of professionals with regard to feeling that you are a burden as a motive to decline or withdraw from treatment. Neither does it take into (...) adequately account the specific needs of the patient that might underlie their feeling of being a burden to others. We propose a care ethics approach as an alternative. It focuses on being attentive and responsive to the caring needs of those involved in the care process—which can be much more specific than either receiving or withdrawing from treatment. This approach considers these needs in the context of the patient's identity, biography and relationships, and regards autonomy as relational rather than as individual. We illustrate the difference between these two approaches by means of the case of Mrs K. Furthermore, we show that a care ethics approach is in line with interventions that are found to alleviate feeling a burden and maintain that facilitating moral case deliberation among practitioners can supports them in taking a care ethics approach to moral dilemmas in (not) treating patients who feel like a burden. (shrink)

The prominent burden-sharing principles in the emerging literature of the political theory of climate change fail to sufficiently tackle the task they set out to solve. This paper sets out properties that an alternative principle should aim to meet. Based on these properties, it develops a consequentialist moral principle – the wastefulness principle. This principle holds that it is wrong to waste a shared, scarce resource. The paper argues that this principle can be used to solve the question of (...) who should bear the burdens of anthropogenic climate change in a more suitable way than existing principles. After developing the wastefulness principle, this paper discusses in a non-exhaustive manner how it can be employed in the real world, which challenges it might meet, and how additional principles might solve them. (shrink)

Objective: To explore the experiences of people with a “terminal illness”, focusing on the patients’ perspective of euthanasia and assisted suicide.Method: A qualitative study using narrative interviews was conducted throughout the UK. The views of the 18 people who discussed euthanasia and assisted suicide were explored. These were drawn from a maximum variation sample, who said that they had a “terminal” illness, malignant or non-malignant.Results: That UK law should be changed to allow assisted suicide or voluntary euthanasia was felt strongly (...) by most people. Those who had seen others die were particularly convinced that this should be a right. Some had multiple reasons, including pain and anticipated pain, fear of indignity, loss of control and cognitive impairment. Those who did not want to be a burden also had other reasons for wanting euthanasia. Suicide was contemplated by a few, who would have preferred a change in the law to allow them to end their lives with medical help and in the company of family or friends. The few who opposed a change in UK law, or who felt ambivalent, focused on involuntary euthanasia, cited religious reasons or worried that new legislation might be open to abuse.Conclusion: Qualitative research conducted on people who know they are nearing death is an important addition to the international debate on euthanasia and assisted suicide. Those who had seen others die were particularly convinced that the law should be changed to allow assisted death. (shrink)

Moral relativism is often rejected on grounds that it is either descriptively inadequate, at best, or self-defeating, at worst. In this essay, I swim against the predominant anti-relativistic philosophical tide. My minimal aim is to show that relativism is neither descriptively inadequate nor self-defeating. My maximal aim is to outline the beginnings of an argument that relativism is a truth resting on deep facts about the human normative predicament. And I shall suggest that far from being a source of (...) cultural degeneracy, the fact of relativism has the potential to ground a culture that is deeply life-affirming. My argument against the twin charges of descriptive inadequacy and self- defeat turns on a distinction between tolerant and intolerant relativism. I concede that many of the standard arguments against relativism do have force against tolerant relativism. But against intolerant relativism, those arguments are entirely unavailing. The crucial difference between the tolerant and intolerant relativist is that although the intolerant relativist agrees with the tolerant relativist that norms are relative, she insists that agents are sometimes entitled to hold others to norms by which they are not bound. I shall argue that just because the intolerant relativist allows that we are sometimes entitled to hold others to norms by which we are bound but they are not, she is able to escape both the charge of descriptive inadequacy and the charge of self- defeat. In particular, I shall show that the intolerant relativist has a coherent and satisfying account of the nature of moral disagreement and moral argument. Establishing the ultimate truth of relativism, however, would take more than showing that one form of relativism escapes certain standard arguments against relativism. Though I do not pretend to conclusively discharge the burden of showing that relativism is true in the space of this essay, I do sketch the beginnings of an account of what I call the bindingness of norms that has intolerant relativism as more or less straight-forward downstream consequence. If there are independent grounds for accepting that account of bindingness, then there are independent grounds for accepting intolerant moral relativism. (shrink)

These two small works are a good supplement to Rescher’s recent trilogy. Whereas the systems-theoretic approach is employed in Methodological Pragmatism in dealing with the problem of the legitimation of claims to factual knowledge or cognitive rationality, Dialectics deals with the argumentation aspect of thesis-introduction rather than the logical aspect of thesis-derivation. Although some key notions such as the idea of burden of proof and presumption have been stated in the former work, what is offered here is a systematic (...) discussion of a disputational model of inquiry. The principal aims are "to exhibit the sociocommunal roots of the foundations of rationality, to provide an instrument for the critique of scepticism implicit in the cognitive solipsism of the Cartesian approach, and to illuminate the communal and controversy-oriented aspects of rational argumentation and inquiry—scientific inquiry in particular." Again, Rescher limits his discussion to "the probative mechanism in the factual domain." This book, if it were not for its price, should be a good supplement to a course in "informal" logic which focuses on argumentation rather than on mere evaluation of arguments. Plausible Reasoning provides the mechanism for evaluation of plausibility claims as distinct from probabilistic ones. The basic differences between these two types of claims are clearly discussed. "Plausibility is essentially a classificatory concept which ranks theses in terms of the standing and solidity of their cognitive basis. Plausibility grades theses by an external or extrinsic standard of the hierarchical nature of their supporting bases. It classifies propositions by the status of the evidential sources or validating principles that vouch for them. Probability weighs alternatives and evaluates theses by this relative contentual weight of the supporting considerations."—A.S.C. (shrink)

Taking steps to build a more dementia‐friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what (...) they might consider a “good life” with dementia. Specific proposals, such as payment for dementia care managers and new systems to support high‐quality, symptom‐based palliative care beyond the hospice benefit of only six months, would improve and reframe how many people in the United States experience a dementia illness. Such changes should be incorporated into discussions about improving and respecting preferences in the later stages of dementia. (shrink)

In this paper, I argue that established responses to the demandingness objection fail to acknowledge an alternative explanation of the intuitive pull of this objection for a significant subset of norms being subject to it. This is the class of imperfect collective duties, which give rise to conceptually distinct objections from fairness that nonetheless permeate many clear examples of intuitively problematic moral demands. Such duties obtain where it is morally required to attain a certain outcome O, yet obtaining O (...) does not require each moral agent to do as much as they individually can but instead requires a finite amount of effort that can be variously allocated to different agents – think of classic collective action problems such as protesting against an unjust policy, lobbying a government, donating to disaster relief, or hosting refugees. -/- In such cases, our collective ability to attain O grounds a collective duty C to attain O, but this collective duty can be translated into various schemes of individual duties P to contribute towards O. Accordingly, this decomposition of C raises a problem of distributive justice. In fact, many intuitive objections to unfair distributions in such cases can be readily accounted for with the conceptual apparatus of prominent theories of distributive justice, but not by standard theories of interpersonal morality. For instance, the moral relevance of the fact that performing a composite duty P is more burdensome for agent A than for agent B can readily be explained in luck-egalitarian terms. Yet both utilitarians and contractualists could not account for this fact independently of an appeal to the demandingness objection, provided that the moral importance of the outcome attainable through P still trumps reasons against it that are due to the burden borne by the agent. -/- Put briefly, then, we need to clearly distinguish objections that morality demands _too much_ of me from objections that morality demands too much _of me_. Doing so is likely to make accepting the demandingness of morality properly construed more intuitively plausible, perhaps as mitigated by certain existing responses. (shrink)

BackgroundIn the early phase of the COVID-19 pandemic, many restrictions hit people in ways never seen before. Mental wellbeing was affected and burden was high, especially for high-risk groups such as parents. However, to our knowledge no research has yet examined whether being a parent was not only a risk for psychological burden but also a way to cope with the COVID-19 pandemic.MethodsAn online survey was used to collect data from 1,121 participants from April to June 2020. (...) In addition to demographic variables, risk factors and protective factors were collected. The dataset was divided into three groups: parents whose children lived at home, parents whose children did not live at home, and people who were not parents.ResultsA linear mixed effect model showed that parents had no higher burden than non-parents, and even less when children did not live at home. Expected risk factors were generally less important, and there were no differences between parents and non-parents. In contrast, parents had advantages in protective factors.ConclusionIn the early phase of the COVID-19 pandemic, it was shown that parents were not necessarily at risk due to additional burden, but also had prospects of coping better with the situation than people without children. (shrink)

Over the last years the association ‘the Christian articles of faith’ in which protestant and catholic dogmatic theologians working at various Dutch universities participate has organized a autumn-conference. The theme of the 2005 conference was: the notae ecclesiae especially the holiness. One of the guest speakers was Robert Jenson, who read his paper Can holiness be a nota ecclesiae?. He starts with a critical examination of the qualifications ‘proprietas’ and ‘nota’, but the main burden of the paper is a (...) discussion of ‘holiness’. Taking his clue from the use of holy in the story of the Annunciation Jenson argues that holiness is to be understood in a Trinitarian way: ‘actual holiness and the triune God are, by an extension of an ancient theological rule, the very same thing. From which it follows that creatures can be holy only by sharing the triune life.’ Since the holiness of the church is the holiness of the Body of Christ, decisive for understanding the holiness of the Church is the understanding of the holiness of Christ. Instead of the traditional ‘metaphysical’ interpretation of Chalcedon, Jenson puts forward a ‘somewhat riskier’ Christology: the humanity of Christ is not just the receptacle for some created graces , but is the holiness. As with Christ the holiness of the Church is visible sub contrario. (shrink)

Clinical investigators must engage in just subject recruitment and selection and avoid unduly influencing research participation. There may be tension between the practice of keeping payments to participants low to avoid undue influence and the requirements of justice when recruiting normal healthy volunteers for phase 1 drug studies. By intentionally keeping payments low to avoid unduly influenced participation, investigators, on the recommendation or insistence of institutional review boards, may be targeting or systematically recruiting healthy adult members of lower socio-economic groups (...) for participation in phase 1 studies. Investigators are at risk of routinely failing to fulfill the obligation of justice, which prohibits the systematic targeting and recruiting of subjects for reasons unrelated to the nature of the study. Insofar as we take seriously the obligation to engage in just subject recruitment and selection, I argue that we must acknowledge the implications low payments might have for subject recruitment and selection and examine the effect of low payments. If low payments de facto target the less well-off for phase 1 studies, we must defend the priority ranking of the obligation to avoid undue influence over the obligation of justice or adopt an alternative recruitment approach. This paper identifies a number of alternatives to the current system of low-value payments to research participants. (shrink)

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)

Patients and physicians do not know the cost of medical procedures. Opaque medical billing thus contributes to exorbitant, rising medical costs, burdening the healthcare system and individuals. After criticizing two proposed solutions to the problem of opaque medical billing, I argue that the Centers for Medicare and Medicaid Services should pursue a rule requiring that patients be informed by the physician of a reasonable out-of-pocket expense estimate for non-urgent procedures prior to services rendered.

There is a remedy available for many of our ailments: Psychopharmacology promises to alleviate unsatisfying memory, bad moods, and low self-esteem. Bioethicists have long discussed the ethical implications of enhancement interventions. However, they have not considered relevant evidence from psychology and economics. The growth in autonomy in many areas of life is publicized as progress for the individual. However, the broadening of areas at one’s disposal together with the increasing individualization of value systems leads to situations in which the range (...) of options asks too much of the individual. I scrutinize whether increased self-determination and unbound possibilities are really in a person’s best interests. Evidence from psychology and economics challenges the assumption that unlimited autonomy is best in all cases. The responsibility for autonomous self-formation that comes with possibilities provided by neuro-enhancement developments can be a burden. To guarantee quality of life I suggest a balance of beneficence, support, and respect for autonomy. (shrink)

Patients at the end of their life who express a wish to die sometimes explain their wish as the desire not to be a burden to others. This feeling needs to be investigated as an emotion with an intrinsically dialogical structure. Using a phenomenological approach, two key meanings of the feeling of being a burden to others as a reason for a wish to die are identified. First, it is an existential suffering insofar as it contains the (...) perception of a plight so desperate that it can only be relieved by the end of the patient’s existence. Second, it is an empathic concern that implies caring about those who bear the burden of caring for the person at the end of their life. It is therefore a moral emotion, encompassing a series of difficulties, including the subjective perception of a stark imbalance between giving and taking, the adequacy of the representation of the caregiver burden in the patient’s mind, and the danger of diminishing the worth of one’s life out of shame or self‐denigration. R. D. Laing’s terminology of crossed perspectives in interexperience is used to systematically distinguish the actual caregiver burden, the patient’s view of the caregiver burden, the stress for the patient in feeling that s/he is a burden to the caregiver, and the caregiver’s view of the patient’s stress. The sense of being a burden implies the belief that the caregiver feels burdened, and the fear that this burden could become unbearable. (shrink)

According to the normativist, it is built into the nature of belief itself that beliefs are subject to a certain set of norms. I argue here that only a normativist account can explain certain non‐normative facts about what it takes to have the capacity for belief. But this way of defending normativism places an explanatory burden on any normativist account that an account on which a truth norm is explanatorily fundamental simply cannot discharge. I develop an alternative account that (...) can achieve explanatory adequacy where this sort of truth privileging account falls short. (shrink)

This paper explores how whiteness as the transcendental norm shapes the meaning structure of Black-being-in-the-world. If home is a place, a site, a dwelling of acceptance, where one is allowed to feel safe, to relax, to let one’s guard down, then being Black in white supremacist America is anathema to being at home for Black people. Indeed, to be Black is to be a stranger, something “strange,” “scary,” “dangerous,” an “outsider.” To be Black within white America belies (...) what it means to dwell, to reside, to rest. In other words, one’s sense of racialized Black embodiment remains on guard, unsettled, hyperalert. Phenomenologically, there is a profound sense of alienation, where one’s racialized body is ostracized and shunned. On this score, I examine, within the mundane context of an elevator, how the dynamics of intersubjectivity and sociality are strained through the dynamics of the white gaze. The white gaze, among other things, functions to police the meaning of the Black body and attempts to de-subjectify Black embodiment. In this way, the only real perspective is white. Black bodies are deemed devoid of a perspective on the world as there is no subjectivity, no sense of agential meaning making. One might say that Black people, on this view, constitute an essence, a typified mode of being. Unlike the existentialist thesis where existence precedes essence, Black people are locked into an objecthood, a fungible and fixed essence. This racial and racist myth is what, for Schutz, would collapse the importance that he places on intersubjectivity and sociality. Indeed, within this paper, I delineate the threatening, necro-political dimensions of whiteness that I experienced after writing the well-known article “Dear White America.” That experience cemented, for me, and for many other readers, what it means to occupy the residence of whiteness, an abode that can take one’s life in the blink of an eye. The experience of the racialized stranger means walking a tightrope, a precarious situation where one flirts with death, where one’s body is deemed hypersexual, inferior, frightening, and monstrous. Based upon this construction, the white body is deemed the site of virtue, safety, deliverer, protector of all things white and pure. Think here of “the white man’s burden” or the idea of “white manifest destiny.” Stain, blemish, taint, and defilement are indelible markers of the stranger. And based upon the logics of racial purity, one must extinguish the “vermin,” the “criminals,” the “rapists.” While I don’t explore this within the paper, Schutz scholars will immediately recognize the genocidal implications of what would have been at stake for Schutz had he not escaped Adolf Hitler’s anti-Semitic gaze and his Anschluss of Austria. My sense is that Schutz would have understood not just the horrors of white racism but would appreciate the necessity of theorizing the need to rethink home as existentially capacious and intersubjectively vibrant. I conclude this paper by thinking through the concept of “breakdown”, delineating its spatial, phenomenological, and subjectively embodied implications. Breakdown, as I use the term, upends forms of white racialized habituation, creating possible embodied psychic space for what I term un-suturing, which involves undoing the machinations of white safety in the face of alterity, where the stranger invokes wonder and self-critique. (shrink)

Norwegian health professionals, elderly people and family members experience ethical problems involving end-of-life decision making for elders in the context of the values of Norwegian society. This study used ethical inquiry and qualitative methodology to conduct and analyze interviews carried out with 25 health professionals, six elderly people and five family members about the ethical problems they encountered in end-of-life decision making in Norway. All three participant groups experienced ethical problems involving the adequacy of health care for elderly Norwegians. Older (...) people were concerned about being a burden to their families at the end of their life. However, health professionals wished to protect families from the burden of difficult decisions regarding health care for elderly parents at the end of life. Strategies are suggested for dialogue about end-of-life decisions and the integration of palliative care approaches into health care services for frail elderly people. (shrink)

Suicide is amongst the top ten causes of death for all age groups in most countries of the world. It is the second most important cause of death in the younger age group (15-19 yrs.) , second only to vehicular accidents. Attempted suicides are ten times the successful suicide figures, and 1-2% attempted suicides become successful suicides every year. Male sex, widowhood, single or divorced marital status, addiction to alcohol ordrugs, concomitant chronic physical or mental illness, past suicidal attempt, adverse (...) life events, staying in lodging homes or staying alone, or in areas with a changing population, all these conditions predispose people to suicides. The key factor probably is social isolation. An important WHO Study established that out of a total of 6003 suicides, 98% had a psychiatric disorder. Hence mental health professionals have an important role to play in the prevention and management of suicide. Moreover, social disintegration also increases suicides, as was witnessed in the Baltic States following collapse of the Soviet Union. Hence, reducing social isolation, preventing social disintegration and treating mental disorders is the three pronged attack that must be the crux of any public health programme to reduce/prevent suicide. This requires an integrated effort on the part of mental health professionals (including crisis intervention and medication/psychotherapy), governmental measures to tackle poverty and unemployment, and social attempts to reorient value systems and prevent sudden disintegration of norms and mores. Suicide prevention and control is thus a movement which involves the state, professionals, NGOs, volunteers and an enlightened public. Further, the Global Burden of Diseases Study has projected a rise of more than 50% in mental disorders by the year 2020 (from 9.7% in 1990to 15% in 2020). And one third of this rise will be due to Major Depression. One of the prominent causes of preventable mortality is suicidal attempts made by patients of Major Depression. Therefore facilities to tackle this condition need to be set up globally on a warfooting by governments, NGOs and health care delivery systems, if morbidity and mortality of the world population has to be seriously controlled . The need, first of all, is to identify suicide prevention as public health policy, just as we think in terms of Malaria or Polio eradication, or have achieved smallpox eradication. (shrink)

A key concern of global ethics is the equitable distribution of benefits and burdens amongst persons belonging to different populations. Until recently, the philosophical literature on global distribution was dominated by the question of how benefits and burdens should be divided amongst contemporaries. Recent years, however, have seen an increase in research on the scope and content of our duties to future generations. This has led to a number of innovative attempts to extend principles of distribution across time while retaining (...) a focus on the entitlements of the existing poor. In this article, I examine a key aspect of intergenerational justice, namely, the appropriate 'pattern' of well-being that should be obtained across generations. With the aid of research into the impacts of global climate change, I evaluate a number of rival accounts of the pattern of justice and go on to explore the merits of a 'global sufficientarian' ethic, which holds that as many persons as possible should enjoy a satisfactory level of well-being regardless of when or where they live. (shrink)

The first is that a miracle, understood as an event produced by a transcendent agent overriding the usual course of nature, involves a violation of the laws of nature. Larmer argues that events are explained by reference to both relevant laws and units of mass/energy in the sequences to be explained. He contends that a miracle need not be conceived as involving a violation of natural law, but rather as the creation or annihilation of mass/energy by a transcendent agent. In (...) reply to the objection that this account would violate the first law of thermo-dynamics, he distinguishes two forms of the principle -- one metaphysical, one scientific -- and aruges that a miracle would not violate the principle considered as a scientific law. The second assumption is that miracle testimony cannot serve as evidence for theism. Larmer demonstrates that the logical ties connecting the concept of miracle to theism need not imply that one must be a theist to evaluate miracle testimony properly. All that is required is that one is prepared to entertain theism as a hypothesis. Attacking these assumptions allows Larmer to show that Humean balance-of-probabilities arguments, based on a presumed conflict between evidence which establishes belief in the laws of nature and evidence in favour of miracles, miss the point if miracles need not be defined as violations of the laws of nature. He argues that, in the absence of a general argument demonstrating that the testimonial evidence in favour of miracles conflicts with the evidence for the laws of nature, it is up to the atheist to demonstrate, on a case-by-case basis, why the testimonial evidence is to be rejected. His conclusion is that, contrary to what is usually thought, the burden of proof lies not upon the shoulders of the theist, but upon the shoulders of the atheist. (shrink)

Hundreds of thousands of individuals experience traumatic injuries each year. Some are mild to moderate in nature and patients experience full functional recovery and little change to their physical appearance. Others result in enduring, if not permanent, changes in physical functioning and appearance. Reconstructive plastic surgical procedures are viable treatments options for many patients who have experienced the spectrum of traumatic injuries. The goal of these procedures is to restore physical functioning and reduce the psychosocial burden of living with (...) an appearance that may be viewed negatively by the patient or by others. Even after receipt of reconstructive procedures, many patients are left with residual disfigurement. In some, disability and disfigurement may be so profound that individuals are candidates for vascularized composite allotransplantation procedures, i.e., the transplantation of a vascularized human body part containing multiple tissue types as an anatomical and/or structural unit. This narrative review paper summarizes the literature on the psychosocial burden experienced by those who have visible disfigurement. While many of these individuals experience stigma and discrimination, relatively few studies have employed a stigma framework to understand the psychosocial sequelea. This paper briefly addresses this framework. Last, particular focus is given to the psychosocial issues of individuals with particularly severe injuries who are potential candidates for VCA procedures. (shrink)

What is sin? Is it simply wrongdoing? Why do its effects linger over time? In this sensitive, imaginative, and original work, Gary Anderson shows how changing conceptions of sin and forgiveness lay at the very heart of the biblical tradition. Spanning nearly two thousand years, the book brilliantly demonstrates how sin, once conceived of as a physical burden, becomes, over time, eclipsed by economic metaphors. Transformed from a weight that an individual carried, sin becomes a debt that must be (...) repaid in order to be redeemed in God's eyes. Anderson shows how this ancient Jewish revolution in thought shaped the way the Christian church understood the death and resurrection of Jesus and eventually led to the development of various penitential disciplines, deeds of charity, and even papal indulgences. In so doing it reveals how these changing notions of sin provided a spur for the Protestant Reformation. Broad in scope while still exceptionally attentive to detail, this ambitious and profound book unveils one of the most seismic shifts that occurred in religious belief and practice, deepening our understanding of one of the most fundamental aspects of human experience. (shrink)

In theory, cochlear implants hold out the possibility of enabling profoundly prelingually deaf children to hear. For these children's parents, who are usually hearing, this possibility is a great relief. Yet the decision to have this prosthetic device implanted ought not to be viewed as an easy or obvious one. Implant efficacy is modest and the burdens associated with them can be great. Moreover, the decision to forgo cochlear implantation for one's child, far from condemning her to a world of (...) meaningless silence, opens the child up to membership in the Deaf community, which has a rich history, language, and value system of its own. (shrink)

Advances in science and technology have created a plethora of medical therapies in various forms including drugs, devices, and equipment. Many of these therapies are not curative, however, and patients sometimes find themselves being more burdened than benefited by them. These situations result in ethical dilemmas for which the bioethicist is sometimes consulted to resolve. Using philosophical principles of maximizing good, minimizing harm, being just, and respecting the values of others, the bioethicist counsels patients, families, and hospital personnel, (...) sometimes functioning as advocate, arbitrator, negotiator, mediator, and teacher. (shrink)

There is a paucity of treatment options for cognitively normal individuals with drug resistant genetic generalized epilepsy. Centromedian nucleus of the thalamus deep brain stimulation may be a viable treatment for GGE. Here, we present the case of a 27-year-old cognitively normal woman with drug resistant GGE, with childhood onset. Seizure semiology are absence seizures and generalized onset tonic clonic seizures. At baseline she had 4–8 GTC seizures per month and weekly absence seizures despite three antiseizure medications and vagus nerve (...) stimulation. A multidisciplinary committee recommended off-label use of CM DBS in this patient. Over 12-months of CM DBS she had two GTC seizure days, which were in the setting of medication withdrawal and illness, and no GTC seizures in the last 6 months. There was no significant change in the burden of absence seizures. Presently, just two studies clearly document CM DBS in cognitively normal individuals with GGE or idiopathic generalized epilepsy [in contrast to studies of cognitively impaired individuals with developmental and epileptic encephalopathies ]. Our results suggest that CM DBS can be an effective treatment for cognitively normal individuals with GGE and underscore the need for prospective studies of CM DBS. (shrink)

Alcohol use disorder is a burden to society creating social and health problems. Detection of AUD and its effects on the brain are difficult to assess. This problem is enhanced by the comorbid use of other substances such as nicotine that has been present in previous studies. Recent machine learning algorithms have raised the attention of researchers as a useful tool in studying and detecting AUD. This work uses AUD and controls samples free of any other substance use to (...) assess the performance of a set of commonly used machine learning classifiers detecting AUD from resting state functional network connectivity derived from independent component analysis. The cohort used included 51 alcohol dependent subjects and 51 control subjects. Despite alcohol, none of the 102 subjects reported use of nicotine, cannabis or any other dependence or habit formation substance. Classification features consisted of whole brain rsFNC estimates undergoing a feature selection process using a random forest approach. Features were then fed to 10 different machine learning classifiers to be evaluated based on their classification performance. A neural network classifier showed the highest performance with an area under the curve of 0.79. Other good performers with similar AUC scores were logistic regression, nearest neighbor, and support vector machine classifiers. The worst results were obtained with Gaussian process and quadratic discriminant analysis. The feature selection outcome pointed to functional connections between visual, sensorimotor, executive control, reward, and salience networks as the most relevant for classification. We conclude that AUD can be identified using machine learning classifiers in the absence of nicotine comorbidity. (shrink)

This paper will compare the presentation of solidarity in mainstream Christian ethics with the practices of solidarity as described in recent novels about immigrant and refugee experiences. The practice of solidarity in diaspora communities illuminates aspects of solidarity that have been hidden in mainstream Christian ethics. 1) Solidarity can be a “burdened virtue” that does not necessarily lead to flourishing. 2) Solidarity is practiced by “narrative selves” that inherit identities, relationships, and obligations.

In this paper I argue that it is morally important for doctors to trust patients. Doctors' trust of patients lays the foundation for medical relationships which support the exercise of patient autonomy, and which lead to an enriched understanding of patients' interests. Despite the moral and practical desirability of trust, distrust may occur for reasons relating to the nature of medicine, and the social and cultural context within which medical care is provided. Whilst it may not be possible to trust (...) at will, the conscious adoption of a trusting stance is both possible and warranted as the burdens of misplaced trust fall more heavily upon patients than doctors. (shrink)

This paper considers the probative burdens of proposing action or policy options in deliberation dialogues. Do proposers bear a burden of proof? Building on pioneering work by Douglas Walton (2010), and following on a growing literature within computer science, the prevailing answer seems to be “No.” Instead, only recommenders—agents who put forward an option as the one to be taken—bear a burden of proof. Against this view, we contend that proposers have burdens of proof with respect to their (...) proposals. Specifically, we argue that, while recommenders that Φ bear a burden of proof to show that □Φ (We should / ought to / must Φ), proposers that Φ have a burden of proof to show that ◇Φ (We may / can Φ). A burden of proposing may be defined as, which reads: Those who propose that we might Φ are obliged, if called upon, to show that Φ is possible in any of four ways which we call worldly, deontic, instrumental, and practical. So understood, burdens of proposing satisfy the standard formal definition of burden of proof. (shrink)