Eva Feder Kittay combines a philosopher’s appeal to logic and an advocate’s call for action. Over the years she has written cogently about theories of caregiving and dependence, shared her experiences as a parent of a disabled child, and now adds what she has learned about caring for elderly relatives. In this commentary I want to clarify a few points in her far-ranging essay. I also want to suggest broadening her focus on paying for long-term care to include reforming (...) the long-term care system. Finally, I have reservations about the high standards she sets for reciprocity between caregivers and care recipients. While Kittay sees similarities (as well as differences) in the needs of children and young adults .. (shrink)

The stressful nature of caring for an older adult with a chronic disease, such as Alzheimer’s disease, can create barriers between the caregiver-care recipient, as they try to navigate their continuously changing social relationship. Interpersonal synchrony, is an innovative approach that could help to sustain caregiving relationship dynamics by promoting feelings of connection and empathy through shared behavior and experiences. This review investigates the current literature on interpersonal synchrony from an interdisciplinary perspective by examining interpersonal synchrony through psychological, neural, (...) and hormonal measures across the adult lifespan. We then present a case for examining the degree to which interpersonal synchrony can be used to facilitate affiliation and well-being in the caregiver-care recipient relationship. We find that there is significant evidence in healthy adult populations that interpersonal synchrony can support affiliative feelings, prosocial behavior, and well-being. Characterizing the psychological, neural, and hormonal mechanisms of interpersonal synchrony is a first step towards laying the groundwork for the development of tools to support relational closeness and empathy in the caregiving context. Finally, we explore the strengths and limitations of using interpersonal synchrony to support relational well-being, and discuss possible avenues for future research. (shrink)

The literature on migrant care workers has tended to place little emphasis on the multiple relationships that migrant carers form with care recipients, employers/managers and work colleagues. This article makes a contribution to this emerging field, drawing on data from qualitative interviews carried out with 40 migrant care workers employed in the institutional and domiciliary care sectors in Dublin, Ireland. While the analysis revealed generally positive carer—care recipient relationships, significant racial and cultural tensions were (...) evident within the vertical and especially the horizontal relationships in the care workplace. The article argues that these findings highlight the need for additional research on the relationships formed in the long-term care sector and further theorizing on the meaning and importance of the affective components of care work within increasingly commodified care markets. (shrink)

I argue that it is appropriate for adult recipients of personal care to feel and express gratitude whenever care providers are inspired partly by benevolence, and deliver a real benefit in a manner that conveys respect for the recipient. My focus on gratitude is consistent with important aspects of feminist ethics of care, including its attention to the particularities and vulnerabilities of caregivers and care recipients, and its concern with how relations of care (...) are shaped by social hierarchies and public institutions. In addition, it goes beyond the current preoccupations of care ethicists both by introducing gratitude as an important aspect of morally valuable relations of care and by stressing the significance of attending not only to the needs but also the capacities of recipients of care. (shrink)

There has been little previous scholarship regarding the aims, options and impact of ethics education on residential care‐givers. This manuscript details findings from a pragmatic cluster trial evaluating the impact of three different approaches to ethics education. The focus of the article is on one of the interventions, an immersive simulation experience. The simulation experience required residential care‐givers to assume the profile of elderly care‐recipients for a 24‐hr period. The care‐givers were student nurses. The project (...) was reviewed favourably by a university ethics committee, and participants provided informed consent. Data from six postsimulation experience focus groups were analysed thematically and three themes were identified: the experience of vulnerability, dignity in care and the organisation of care. Findings suggest that the immersive simulation experience had a powerful immediate impact as participants described epiphanous insights relating to their care experiences. It is suggested that reflecting on and recording epiphanous events has the potential to sustain ethical care practices. Further research is required to evaluate the impact of different ethics education interventions in different cultural contexts. Exploration is also required regarding the meaning and significance of care epiphanies, those “most delicate and evanescent of moments,” for the sustainability of ethical care. (shrink)

One barrier to optimal pain management in the neonatal intensive care unit is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are vulnerable to pain and harm, and completely (...) dependent on others for pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate’s family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers. (shrink)

We vindicate the widespread intuition that there is something morally problematic with for-profit corporations providing care to young children and elders. But instead of putting forward an empirical argument showing that for-profit corporations score worse than not-for-profits when it comes to meeting the basic needs of these vulnerable groups, we develop a philosophical argument about the nature of the relationship between a care organisation, its role-occupants, and care recipients. We argue that the correlation between profit and (...) lower-quality care is a result of intrinsic features of a for-profit model, combined with conceptual features of meaningful caring relationships, such that non-profits are the most reliable institutional providers of adequate care. Our claim is that care requires a kind of commitment that for-profit institutions are constituted to avoid, and that non-profit institutions are constituted to embrace. (shrink)

An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely (...) to become involved in the caring process and informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers. (shrink)

Research on mental health of non-professional caregivers has focused on caregivers of people with specific diseases, especially dementia. Less is known about caregivers of people with other diseases. The aims of this study were (a) to determine the caregivers’ emotional state in a random sample of caregivers of people in situations of dependency, (b) to analyze the association between each disease of the care-recipient (a variety of 23 diseases included in the International Classification of Diseases) and the emotional state (...) of the caregiver, and (c) based on the theoretical model, to analyze the relationship of the different study variables in the appearance of the emotional distress of the caregiver. A sample of 491 non-professional caregivers was selected randomly (89.0% women, average age 55.3 years). Trained psychologists collected sociodemographic and care-related characteristics and evaluated the global emotional distress, somatic symptoms, anxiety-insomnia, social dysfunction, depression, probable mental disorder case, self-esteem and social support. It was found that (a) the caregivers showed moderate emotional distress, and 33.8% presented a probable mental disorder. (b) Caring for a care-recipient with cat's cry syndrome or epilepsy was related to suffering from social dysfunction, and caring for a care-recipient with autism was related to having a probable mental health case. (c) Social support mediated the relationship between social class, daily hours of care, monthly family income, self-esteem and global emotional distress. There is an important impact on the emotional state of the caregivers. This impact was similar in caregivers of care-recipients with different diseases, except in caregivers caring for a care-recipient with cat's cry syndrome or epilepsy (related to social dysfunction), and in caregivers caring for a care-recipient with autism (related to having a probable mental health case). (shrink)

This paper examines moral dilemmas faced by family caregivers of older adults who employ live-in migrant care workers. Being both a family caregiver as well as an employer of a live-in migrant care worker often puts family members at a crossroad, where moral decisions must be made. Lacking a formal role, family members do not have a professional code of ethics or other clear rules that can guide their actions, and their choices are rooted in cultural, community, familial, (...) and personal values. This paper discusses moral dilemmas that result from family caregivers’ dual commitment, to the wellbeing of their older sick relative who is the recipient of care, and to the wellbeing of the live-in care worker whom they employ. The paper uses relational ethics as a theoretical framework to discuss three cases that involve complex moral decision making in real life. (shrink)

In the early twenty-first century, we stand on the threshold of welcoming robots into domains of human activity that will expand their presence in our lives dramatically. One provocative new frontier in robotics, motivated by a convergence of demographic, economic, cultural, and institutional pressures, is the development of “carebots”—robots intended to assist or replace human caregivers in the practice of caring for vulnerable persons such as the elderly, young, sick, or disabled. I argue here that existing philosophical reflections on the (...) ethical implications of carebots neglect a critical dimension of the issue: namely, the potential moral value of caregiving practices for caregivers. This value, I argue, gives rise to considerations that must be weighed alongside consideration of the likely impact of carebots on care recipients. Focusing on the goods internal to caring practices, I then examine the potential impact of carebots on caregivers by means of three complementary ethical approaches: virtue ethics, care ethics, and the capabilities approach. Each of these, I argue, sheds new light on the contexts in which carebots might deprive potential caregivers of important moral goods central to caring practices, as well as those contexts in which carebots might help caregivers sustain or even enrich those practices, and their attendant goods. (shrink)

An implicit assumption in most works on change recipient reactions is that employees are self-centred and driven by a utilitarian perspective. According to large parts of the organizational change literature, employees’ reactions to organizational change are mainly driven by observations around the question ‘what will happen to me?’ We analysed change recipients’ reactions to 26 large-scale planned change projects in a policing context on the basis of 23 in-depth interviews. Our data show that change recipients drew on observations (...) with three foci to assess change, making sense of change as multidimensional and mostly ambivalent in nature. In their assessment of organizational change, recipients care not only about their own personal outcomes, but go beyond self-interested concerns to show a genuine interest in the impact of change on their colleagues and organization. Meaningful engagement of employees in organizational change processes requires recognizing that reactions are not simply ‘all about me’. We add to the organizational change literature by introducing a behavioural ethics perspective on change recipients’ reactions highlighting an ethical orientation where moral motives that trigger change reactions get more attention than is common in the change management literature. Beyond the specifics of our study, we argue that the genuine concern of change recipients for the wellbeing of others, and the impact of the organizations’ activities on internal and external stakeholders, needs to be considered more systematically in research on organizational change. (shrink)

Aging populations have become a major concern in the developed world and are expected to require novel care strategies. Public policies, health-care regimes and technology developers alike stress the need for a more individualized care to meet the increased demand for care services in response to demographic change. Increasingly, care services are offered to individuals with diseases and or disabilities in their homes by means of Personalized Health-Monitoring (PHM) technologies. PHM-based home care is typically (...) portrayed as the key to a cost-effective future care that better can accommodate the needs of an aging population and promote care recipients’ independence. In light of the emerging technology-based home care, this article sets forth to investigate the significance and implications of a strong emphasis on independence in relation to this novel care form. Notions of independence as used by care planners, care providers and technology developers are examined in relation to ICT-based home care and the reasonableness of independence as an aim for future health-care is critically discussed. In conclusion, the need for a shift from a strong emphasis on independence to a right to healthy dependence is advocated. (shrink)

Many studies have shown that women are more likely than men to be living kidney donors, and the discrepancy is particularly marked in heterosexual couples: wives are more likely than husbands to donate a kidney to their spouse. This ‘ Gender Kidney Donation Gap’ can be understood in terms of Carol Gilligan’s claims about gender differences in ethical decision-making style, making it appropriate to analyse responses to this imbalance using an ethic of care. This article centres the vast majority (...) of living donors, those who donate in the context of a significant pre-existing relationship. A cost-neutral approach is unfair on donors who make society richer and healthier by helping a loved one. However, models of kidney sale fail to offer an acceptable alternative, either (a) compelling donors to sell into a pool where they do not know the recipient or (b) allowing affluent individuals unfair access to kidneys. Drawing on surrogacy law in England and Wales, a model of compensation is proposed that includes a range of non-financial benefits. This option celebrates donation and expresses gratitude to all donors while avoiding the pitfalls of the marketplace, with an emphasis on fair treatment of donors. Nevertheless, if more generous treatment led to a 10% increase in directed donation, then it would be equivalent to doubling ‘altruistic’ stranger donations. As long as the Gender Kidney Donation Gap persists, the best response is to minimise the discomfort and disruption caused to donors by their profound act of kindness. (shrink)

The intersection between virtue and care ethics is underexplored in contemporary moral philosophy. This thesis approaches care ethics from a neo-Aristotelian virtue ethical perspective, comparing the two frameworks and drawing on recent work on care to develop a theory thereof. It is split into seven substantive chapters serving three major argumentative purposes, namely the establishment of significant intertheoretical agreement, the compilation and analysis of extant and new distinctions between the two theories, and the synthesis of care (...) ethical insights with neo-Aristotelianism to generate a virtue ethical theory of care. In the first two chapters, I outline virtue ethics and care ethics, and argue for considerable agreement over central premises. Chapter 2 summarises the foundational commitments of care ethics, focusing particularly on their relational ontology and its links to the other ethical claims care ethicists universally ascribe to, namely particularism, partialism, the moral salience of emotions, and the rejection of hard public/private distinctions. Chapter 3 lays out the central concepts in neo-Aristotelian virtue ethics, including eudaimonism, virtue, and character traits, and drawing a number of comparisons between virtue and care ethics specifically with regard to relational ontology and the meta-ethical commitments it underpins. In addition to doing the necessary expository work for the remainder of the thesis, Chapters 2 and 3 also argue that care ethics and virtue ethics have much more in common than is typically acknowledged – the first major contribution of this thesis to the literature. Chapters 2 and 3 to provide at least a prima facie justification for pursuit of the questions I confront in the remainder of the thesis. In Chapter 4, I ask what differentiates these two ethical theories. I survey some of the differences which philosophers in either camp have identified and offer some of my own. I suggest that several of those differences either rest on misunderstandings of one ethic or the other, or that in erecting a divide between virtue and care ethics they also disunify ethics of care. I do, however, identify two differences which seem defensible. Specifically, they are that virtue ethics seems to lack an account of care, which I define minimally as a response or responsiveness to need, and that virtue and care ethics organise their meta-ethical and normative concepts differently. This chapter thus presents a second contribution to the literature: a study of the differences between virtue ethics and care ethics. It also serves to set the trajectory for the remaining chapters, where I respond to the claim that virtue ethics lack an account of care. I spend the remainder of the thesis constructing what I take to be a satisfying foundation for a virtue ethical theory of care. In Chapter 5, I offer three initially viable means of incorporating care into virtue ethics, all of which treat care as a virtue. These are the analogical approach, according to which care is analogous to an existing virtue; the additive approach, according to which care is a novel virtue; and the bundling approach, according to which care is a bundle of virtues. I also offer and evaluate reasons to reject the claim that care is a virtue, concluding that the claim is indeed a viable one so long as the concept of care is sufficiently thick, and I contend that analogical approaches, and particularly analogies with charity, outperform the others. Chapter 5 therefore serves two ends. First, it proffers a novel meta-analysis of concepts of care as a virtue, and thus makes a third contribution to the literature. In doing so, it makes an inroad into the second: the development of a neo-Aristotelian theory of care. Chapter 6 continues this project. I attempt to show how care can be construed as an act-type and a practice. I argue in this chapter that practices are a subcategory of actions, and that care qualifies as an Anscombean act-type which aims at the meeting of needs relating to the care-recipient’s flourishing. I go on to consider the implications of this account for ethics which deploy care as a moral concept, maintaining that it not only offers a better account of consequences than theories of care which include success criteria, but also that it affords us interesting insights into the distinction between ‘caring about’ and ‘caring for’ which allow us to make sense of certain tenets of neo-Aristotelianism. This represents a contribution to both discourses, since neither care nor virtue ethicists working at the intersection of their respective normative theories have delved very deeply into the philosophy of action. Chapter 7 discusses caring relations, suggesting that a virtue ethical theory of caring relations can lean on the work care ethicists have done, and adding some necessary refinements, such as a distinction between ideal and non-ideal caring relations, and a theory of caring relations as reasons for action. This final chapter also draws these three concepts of care together by arguing that virtuous caregivers who are invested in the flourishing of those for whom they care are also sensitive to the relations those care-recipients bear to their institutional environment. I argue that because they are caring participants in caring relations, virtuous agents are characteristically motivated by states of need and dependency to engage in certain sorts of conventionally political practices. In other words, the virtue or virtues of caring characteristically manifest in certain sorts of political or social practices, relating specifically to those areas of moral life. This allows us to build upon recent work in feminist virtue ethics of the sort offered by Tessman and Friedman. I also offer a novel analysis of migration, suggesting that the account of care presenting here is analytically useful both when it comes to historical cases of migration such as the underground railroads and escapes from Nazi-occupied Europe, but also for contemporary issues such as the migrations occurring in the Southern United States and in much of Europe. I thus conclude not only that virtue ethicists ought to incorporate care into their normative framework, and that the theory of care presented here is a coherent one, but that this leads us naturally into applied topics such as virtue politics. I conclude the thesis by considering some its implications and by identifying some further avenues for research. (shrink)

The expansion of the older population suggests that there will be significant numbers in need of care and support in their own home environment. Yet, little is known about the kind of situations professionals are faced with and how they intervene in the living environment of older people. Qualitative data were collected over a period of 1.5 years from a multi-disciplinary community-based geriatric team in the Netherlands, and participant observations carried out. Forty-two cases discussed within the team meetings were (...) analysed. Results demonstrate that providing care to older people is a dynamic process and revolves around various paradoxes as experienced by professionals. This is illustrated by presenting three paradoxes that emerged within the data: respecting autonomy versus preserving safety; the care needs of the care recipients versus the capacity of their informal carers to cope; and holding a formal orientation versus a tailored orientation on tasks. Providing care in the home environment of older people requires from professionals a continuous anticipation of (un)expected evolutions in situations of their care recipients. In order to optimally support older people professionals need ‘professional discretion’. They must be supported to systematically reflect on and legitimize their intervention strategies. (shrink)

Background: Not all patients are considered equal. For patients who are considered to be “very important persons,” care can be different from that of other patients with advantages of greater access to resources, special attention from staff, and options for luxurious hospital amenities. While very important person care is common and widely accepted by healthcare administration, it has negative implications for both very important person and non-very important person patients, supports care disparities and inequities, and can create (...) serious ethical dilemmas for healthcare professionals. Very important person care can also result in negative care outcomes for its recipients. Objective: This article sought to explore the implications and ethical considerations of very important person care within the context of United States healthcare system, and integrate bioethical principles and American Nurses Association Code of Ethics for Nurses to influence recommendations for managing ethical dilemmas associated with very important person care. Method: A synthesis of the literature on very important person care was undertaken for this article. Ethical considerations: Ethical conduct was considered and respected when performing the literature review, referencing sources, and establishing authorship. Findings: According to the published literature, very important person care bares both positive and negative implications for patients, and negative implications for nurses. Nurses are the most affected by the demands from their administrators to provide special care and attention to patients in the “very important person” category and their families. Very important person care can be disruptive, disorienting, challenging, and stressful to nurses. Conclusion: While physicians and other healthcare professionals have commented on very important person care, limited work has been done in nursing. There have not been any empirical studies on very important person care. Therefore, in order to minimize the negative implications of very important person care, studies of this phenomenon are warranted. Exposing very important person care is important in the development of an ethical healthcare system. Moreover, understanding the ethical principles surrounding the concept of very important person care will empower nurses to effectively manage conflicts and ethical dilemmas that arise with very important person care. (shrink)

Some care home residents with dementia have the capacity, some do not. Staff may need to make decisions about administering care interventions to someone whom they believe lacks the capacity to consent to it, but also resists the intervention. Such intervention can be termed forced care. The literature on forced care (especially reflecting empirical work) is scant. This study aims to investigate how the ethics of forced care is navigated in practice, through ten semi-structured interviews (...) with staff in 1 care home in the North East of England. Participants generally avoided situations where there was overt restraint, taking a flexible approach by either modifying their own behaviour or using covert techniques. The underlying justification given for decisions or actions tended to be that the recipients of care should be valued because of their intrinsic worth as fellow human beings. Participants attempted to put themselves in the position of the resident or think about what a beloved elderly relative would want. The intervention seemed acceptable to staff if the resident was not distressed. When staff were presented with scenario-based questions around capacity they were more successful than when asked direct questions relating to the Mental Capacity Act. Scenario-based training may be helpful to reinforce familiarity and facility with the principles of the Mental Capacity Act. (shrink)

With robots being introduced into caregiving, particularly for older persons, various ethical concerns are raised. Among them is the fear of replacing human caregiving. While ethical concepts like well-being, autonomy, and capabilities are often used to discuss these concerns, this paper brings forth the concept of social dignity to further develop guidelines concerning the use of robots in caregiving. By social dignity, we mean that a person’s perceived dignity changes in response to certain interactions and experiences with other persons. In (...) this paper, we will first present the concept of social dignity, and then identify a niche where robots can be used in caregiving in an ethical manner. Specifically, we will argue that, because some activities of daily living are performed in solitude to maintain dignity, a care recipient will usually prefer robotic assistance instead of human assistance for these activities. Secondly, we will describe how other philosophical concepts, which have been commonly used to judge robotic assistance in caregiving for the elderly so far, such as well-being, autonomy, and capabilities, are less useful in determining whether robotic assistance in caregiving is ethically problematic or not. To conclude, we will argue that social dignity offers an advantage to the other concepts, as it allows to ask the most pressing questions in caregiving. (shrink)

The aim of this article is to demonstrate the usefulness of qualitative research for studying the ethics of care, bringing to light the lived experience of health care recipients, together with the importance of methods that allow reconstruction of the processes underlying this lived experience. Lived experiences of families being approached for organ donation, parents facing the imminent death of their child and patients being treated using stem cell transplantation are used to illustrate how ethical principles are (...) differentiated, modified or contradicted by the narrative context of persons concerned. The integration of empirical data into ethics will help caregivers in their ethical decision making and may enrich care ethics as a narrative and interpretative field. (shrink)

Choice over home care has become an important pillar in the provision of publicly financed long-term care for people of all ages. In many European welfare states, cash-for-care schemes give care recipients greater choice over home care arrangements by allowing them to pay for care provided by acquaintances, friends and even family members. Paying for such informal care, however, is increasingly contested due to growing care needs, rising costs and the perceived (...) need to tighten access to publicly funded care. Citizens in paid care-giving roles are thus pressured to continue their care unpaid or re-divide their care-giving responsibilities with lay ?citizen-carers?. On the basis of a Dutch case study, this article examines how paid family care-givers experience this call for greater self-sufficiency in providing care. An analysis of 25 interviews and 21 letters of complaint revealed that care-givers felt trapped between their desire to derive social status from paid work and their inability to reject or re-divide previously paid care responsibilities. In a society where all citizens are expected to work, care-givers feel that their previously paid care-giving is devalued from a public to a private matter, despite the government's attempts to reframe care as an act of good citizenship. (shrink)

The duty to provide care is foundational to the nursing profession and the work of nurses. Unfortunately, violence against nurses at the hands of recipients of care is increasingly common. While employers, labor unions, and professional associations decry the phenomenon, the decision to withdraw care, even from someone who is violent or abusive, is never easy. The scant guidance that exists suggests that the duty to care continues until the risk of harm to the nurse (...) is unreasonable, however, “reasonableness” remains undefined in the literature. In this paper, I suggest that reasonable risk, and the resulting strength of the duty to provide care in situations where violence is present, hinge on the vulnerability of both nurse and recipient of care. For the recipient, vulnerability increases with the level of dependency and incapacity. For the nurse, vulnerability is related to the risk and implications of injury. The complex interplay of contextual vulnerabilities determines whether the risk a nurse faces at the hands of a violent patient is reasonable or unreasonable. This examination will enhance our understanding of professional responsibilities and can help to clarify the strengths and limitations of the nurse's duty to care. (shrink)

The chronic worldwide lack of organs for transplantation and the continuing improvement of strategies for in situ organ preservation have led to renewed interest in elective non-therapeutic ventilation of potential organ donors. Two types of situation may be eligible for elective intensive care: patients definitely evolving towards brain death and patients suitable as controlled non-heart beating organ donors after life-supporting therapies have been assessed as futile and withdrawn. Assessment of the ethical acceptability and the risks of these strategies is (...) essential. We here offer such an ethical assessment using the four principles of medical ethics of Beauchamp and Childress applying them in their broadest sense so as to include patients and their families, their caregivers, other potential recipients of intensive care, and indeed society as a whole. The main ethical problems emerging are the definition of beneficence for the potential organ donor, the dilemma between the duty to respect a dying patient's autonomy and the duty not to harm him/her, and the possible psychological and social harm for families, caregivers other potential recipients of therapeutic intensive care, and society more generally. Caution is expressed about the ethical acceptability of elective non-therapeutic ventilation, along with some proposals for precautionary measures to be taken if it is to be implemented. (shrink)

This case report illustrates the ethical issues involved in paediatric liver transplantation, especially in terms of assessing recipient suitability and the role of parents as donors. Ms. X was a child with advanced chronic liver disease who undergone an elective living donor liver transplant with her father as the donor. Post-operatively, she was in a critically ill state as a result of acute liver graft failure with resultant multi-organ dysfunction. A re-transplant was done at 36 hours after the first one, (...) this time with her mother as the donor. She responded well to the transplant, however by post-operative day 8, it was evident that she had features of severe brain stem dysfunction and brain death was subsequently certified. The ethical issues that arise from this case, including the need for careful assessment of recipient suitability for a transplant and the specific considerations of using parents as organ donors, are discussed. (shrink)

Analyses of care work typically speak of three necessary roles of care: the care worker, the care recipient, and an economic provider who makes care materially possible. This model provides no place for addressing the difficult political questions care poses for liberal representative democracy. I propose to fill this space with a new caring role to connect the care unit to the political sphere, as the economic provider connects the care unit to (...) the economic sphere. I call this role that of the “care claimant.” The labor of claiming care consists in the development, expression, and advancement of the interests of the care unit. The argument for employing this fourth care role begins by comparing Nel Noddings's phenomenological care unit to Sara Ruddick's family-based analysis. It then moves to discuss the way Eva Kittay emphasizes the dependency of the charge and its political ramifications to illustrate the need for a care claimant. After distinguishing the care claimant from the other roles of care, I examine the power relationships in the care unit and the position of the care claimant in the public sphere. (shrink)

Systematic study of the intersection of ethics consultation services and solid organ transplants and recipients can identify and illustrate ethical issues that arise in the clinical care of these patients, including challenges beyond resource allocation. This was a single-centre, retrospective cohort study of all adult ethics consultations between January 1, 2007, and December 31, 2017, at a large academic medical centre in the north-eastern United States. Of the 880 ethics consultations, sixty (6.8 per cent ) involved solid organ (...) transplant, thirty-nine (65.0 per cent) for candidates and twenty-one (35.0 per cent ) for recipients. Ethics consultations were requested for 4.3 per cent of heart, 4.9 per cent of lung, 0.3 per cent of liver, and 0.3 per cent of kidney transplant recipients over the study period. Nurses were more likely to request ethics consultations for recipients than physicians (80.0 per cent vs 20.0 per cent, p = 0.006). The most common reason for consultation among transplant candidates was discussion about intensity of treatment or goals of care after the patient was not or was no longer a transplant candidate. The most common reason for ethics consultation among transplant recipients was disagreement between transplant providers and patients/families/non-transplant healthcare professionals over the appropriate intensity of treatment for recipients. Very few consultations involved questions about appropriate resource allocation. Ethics consultants involved in these cases most often navigated communication challenges between transplant and non-transplant healthcare professionals and patients and families. (shrink)

The aim of this study was to elucidate municipal night registered nurses’ (RNs) experiences of the meaning of caring in nursing. The research context involved all night duty RNs working in municipal care of older people in a medium-sized municipality located in central Sweden. The meaning of caring in nursing was experienced as: caring for by advocacy, superior responsibility in caring, and consultative nursing service. The municipal night RNs’ experience of caring is interpreted as meanings in paradoxes: ‘being close (...) at distance’, the condition of ‘being responsible with insignificant control’, and ‘being interdependently independent’. The RNs’ experience of the meaning of caring involves focusing on the care recipient by advocating their perspectives. The meaning of caring in this context is an endeavour to grasp an overall caring responsibility by responding to vocational and personal demands regarding the issue of being a RN, in guaranteeing ethical, qualitative and competent care for older people. (shrink)

Ethical issues in biomedical research are traditionally examined as distinct from those of clinical care. However, this traditional framing may obscure questions of equity and fairness in both rese...

This article adds to critiques of discourses and practices of care that are enmeshed with coloniality. It does so via examining the prominent model of helping marginalized people through giving them the opportunity to care for themselves and their own by being recruited into paid (care) work, thus, becoming “useful” participants in society. This usefulness is read as a colonial project of subordinate inclusion into neoliberal racial capitalism. A perverse ideology of care is mobilized to extract (...) surplus value from marginalized workers “integrated” into the lower echelons of social reproduction. Using historic and contemporary examples, the argument is developed in three steps: First, I discuss how care workers are included via subordination. Second, I analyze how an inversion of care receiver and caregiver transforms marginalized care workers into recipients of integration measures, rendering their care work invisible. Third, I show how racial usefulness, the interpellation that racialized workers be/come “useful,” is undergirded by productivism within neoliberal racial capitalism. (shrink)

Over the past several years, healthcare has been profoundly altered by the growth of managed care. Because managed care integrates the financing and delivery of healthcare services, it dramatically alters the roles and relationships among providers, payers, and patients. While analysis of this change has focused on whether and how managed care can control costs, an increasingly important concern among healthcare providers and recipients is the impact of managed care on the physicianpatient relationship, but little (...) data have been collected and analyzed. We designed a survey for distribution to Wisconsin physicians to analyze the prevalence and types of managed care arrangements in the state, and the impact of these arrangements on physicians and their relationships with patients. (shrink)

The analysis of data from electronic health records aspires to facilitate healthcare efficiencies and biomedical innovation. There are also ethical, legal and social implications from the handling of sensitive patient information. The paper explores the concerns, expectations and implications of the National Health Service England care.data programme: a national data sharing initiative of linked electronic health records for healthcare and other research purposes. Using Nissenbaum’s contextual integrity of privacy framework through a critical Science and Technology Studies lens, it examines (...) the way technologies and policies are developed to promote sustainability, governance and economic growth as the de facto social values, while reducing privacy to an individualistic preference. The state, acting as a new, central data broker reappropriates public ownership rights and establishes those information flows and transmission principles that facilitate the assetisation of NHS datasets for the knowledge economy. Various actors and processes from other contexts attempt to erode the public healthcare sector and privilege new information recipients. However, such data sharing initiatives in healthcare will be resisted if we continue to focus only on the monetary and scientific values of these datasets and keep ignoring their equally important social and ethical values. (shrink)

Background Little is known about the attitudes and practices of intensivists working in Lebanon regarding withholding and withdrawing life-sustaining treatments. The objectives of the study were to assess the points of view and practices of intensivists in Lebanon along with the opinions of medical, legal and religious leaders regarding withholding withdrawal of life-sustaining treatments in Lebanese intensive care units. Methods A web-based survey was conducted among intensivists working in Lebanese adult ICUs. Interviews were also done with Lebanese medical, legal (...) and religious leaders. Results Of the 229 survey recipients, 83 intensivists completed it, i.e. a response rate of. Most respondents were between 30 and 49 years old, Catholic Christians, anesthesiologists, working in Beirut. Ninety-two percent of them were familiar with the withholding and withdrawal concepts and 80% applied them. Poor prognosis of the acute and chronic disease and futile therapy were the main reasons to consider withholding and withdrawal of treatments. Ninety-five percent of intensivists agreed with the “Principle of Double Effect”. The main withheld therapies were vasopressors, respiratory assistance and CPR. Most of the respondents reported the decision was often to always multidisciplinary, involving the family, and the patient, or his advance directives or his surrogate and the nurses. The interviewees agreed there was a law governing withholding and withdrawal decisions/practices in Lebanon. Christians and Muslim Sunni leaders declared accepting those practices. Conclusion Withholding and withdrawal of LSTs in the ICU are known concepts among intensivists working in Lebanon and are being practiced. Our results could be used to inform and optimize therapeutic limitation in ICUs in the country. (shrink)

Ordeals are burdens placed on individuals that yield no benefits to others; hence they represent a dead-weight loss. Ordeals – the most common is waiting time – play a prominent role in rationing health care. The recipients most willing to bear them are those receiving the greatest benefit from scarce health-care resources. Health care is heavily subsidized; hence, moral hazard leads to excess use. Ordeals are intended to discourage expenditures yielding little benefit while simultaneously avoiding the (...) undesired consequences of rationing methods such as quotas or pricing. This analysis diagnoses the economic underpinnings of ordeals. Subsidies for nursing-home care versus home care illustrate. (shrink)

Conversation analysis of 53 emotive responses to troubles tellings on a peer support line discovered eight different methods for expressing empathy and/or sympathy. Emotive reactions, assessments, and formulating the gist of the trouble typically occur early on in a troubles telling. Reporting one’s own reaction was found in the midst of troubles telling, as a second reaction to ‘bad’ news or after callers’ reports of their own feelings. Naming another’s feelings and using an idiom occur towards the end of a (...) troubles telling. Sharing a similar experience of similar feelings and expressing one’s feelings were used in various places within a troubles telling and conveyed more than basic concern about the callers’ feelings. These and other differences between methods further detail the various ways support providers and recipients perform empathy and/or sympathy in situ. (shrink)

Care ethics emphasizes responsibility as a key element for caring practices. Responsibilities to care are taken by certain groups of people, making caring practices into moral and political practices in which responsibilities are assigned, assumed, or implicitly expected, as well as deflected. Despite this attention for social practices of distribution and its unequal result, making certain groups of people the recipient of more caring responsibilities than others, the passive aspect of a caring responsibility has been underexposed by (...) class='Hi'>care ethics. By drawing upon the work of the French phenomenologist Jean-Luc Marion, a care ethical conceptualization of responsibility can by enriched, by scrutinizing how responsibility is literally a response to something else. This paper starts with a vignette of an everyday situation of professional care. After that the current body of care ethical literature on responsibility is presented, followed by Marion’s phenomenology of givenness, using his analysis of Caravaggio’s painting The Calling of St. Matthew and resulting in his redefinition of responsibility. In the next section we present a table in which we juxtapose four distinct paradigms of responsibility, which we will describe briefly. The final section consists of an exploration of the paradigms by an analysis of the vignette and results in a conclusion concerning what Marion’s view has to offer to care ethics with regard to responsibility. (shrink)

Norway provides total social welfare coverage for organ transplantations, including free immunosuppressive medication and prepaid life-long follow up for both recipients and donors. Despite these benefits the proportion of living kidney donors has in recent years declined from around 40% of all kidney transplantations to 24%. This study suggests harnessing patient- and donor-narratives as a tool for addressing the current fall in donation rates. The hospital records of 18 recipient/donor dyads were compared with patient and donor accounts elicited in (...) semi-structured interviews. Narratives afford a pertinent supplement to the primarily biomedical and technical information stored in medical records. Even in condensed form, the messages embedded in narratives contribute to a ‘thicker’ understanding of the complexity of living kidney donation -decisions. Narratives represent a source of education for referring-nephrologists wishing to deepen their evaluation skills and avoid making decisions based on insufficient insight into patients’ and potential donors’ values and life-situation. Recipients’ and donors’ unedited accounts of their motivations, worries, doubts and expectations afford a revealing and edifying supplement to the primarily biomedical and technical information stored in medical records. In narratives, the predicaments and dilemmas surrounding LKD become visible and debatable and can serve as support for future donors, recipients and the nephrologists responsible for evaluation–conclusions. Generating narratives raises a number of practical, epistemic and normative challenges. (shrink)

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients (...) responded.Main outcome measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (shrink)

This article assesses the possible impact of the Care Act 2014 on the provision of social care for elderly and disabled adults in England, focusing particularly on the balance between ensuring adequate care and affecting the property rights of the recipients of social care, their families, and others who might have legal or moral claims to their property. The article uses the European Convention on Human Rights to measure the Act’s implications, arguing that normative problems (...) remain despite the Act’s general compatibility with the Convention. (shrink)

Care-dependency constitutes an important issue with regard to the approval of end-of-life decisions, yet attitudes towards assisted suicide and euthanasia are understudied among care-dependent older adults. We assessed attitudes towards assisted suicide and euthanasia and tested empirical correlates, including socio-demographics, religiosity, physical illness, psychological distress and social isolation. A nationwide cross-sectional survey among older care allowance recipients in private households in Austria was conducted in 2016. In computer-assisted personal interviews, 493 respondents were asked whether or not (...) they approved of the availability of assisted suicide and euthanasia in case of long-term care dependency and whether or not they would consider using assisted suicide or euthanasia for themselves. Multiple logistic regression analysis was used to assess the impact of potential determinants of attitudes towards assisted suicide and euthanasia. About a quarter of the sampled care-dependent older adults approved of the availability of assisted suicide and euthanasia respectively indicated the will to make use of assisted suicide or euthanasia. Attitudes towards assisted suicide were most favourable among care-dependent older adults living in urban areas, those who did not trust physicians, those who reported active suicide ideation, and individuals with a strong fear of dying. With regard to euthanasia, living alone, religiosity and fear of dying were the central determinants of acceptance. Positive attitudes towards and will to use assisted suicide and euthanasia were expressed by a substantial minority of care-dependent older adults in Austria and are driven by current psychological suffering and fear of the process of dying in the future. Community-based psychosocial care should be expanded to address psychological distress and fears about end-of-life issues among care-dependent older adults. (shrink)

Background Care-dependency constitutes an important issue with regard to the approval of end-of-life decisions, yet attitudes towards assisted suicide and euthanasia are understudied among care-dependent older adults. We assessed attitudes towards assisted suicide and euthanasia and tested empirical correlates, including socio-demographics, religiosity, physical illness, psychological distress and social isolation. Methods A nationwide cross-sectional survey among older care allowance recipients in private households in Austria was conducted in 2016. In computer-assisted personal interviews, 493 respondents were asked whether (...) or not they approved of the availability of assisted suicide and euthanasia in case of long-term care dependency and whether or not they would consider using assisted suicide or euthanasia for themselves. Multiple logistic regression analysis was used to assess the impact of potential determinants of attitudes towards assisted suicide and euthanasia. Results About a quarter of the sampled care-dependent older adults approved of the availability of assisted suicide and euthanasia respectively indicated the will to make use of assisted suicide or euthanasia. Attitudes towards assisted suicide were most favourable among care-dependent older adults living in urban areas, those who did not trust physicians, those who reported active suicide ideation, and individuals with a strong fear of dying. With regard to euthanasia, living alone, religiosity and fear of dying were the central determinants of acceptance. Conclusions Positive attitudes towards and will to use assisted suicide and euthanasia were expressed by a substantial minority of care-dependent older adults in Austria and are driven by current psychological suffering and fear of the process of dying in the future. Community-based psychosocial care should be expanded to address psychological distress and fears about end-of-life issues among care-dependent older adults. (shrink)

In this paper, we seek to re-conceptualize the ethical framework through which ethicists and medical professionals view the practice of live kidney donations. The ethics of organ donation has been understood primarily within the framework of individual rights and impartiality, but we show that the ethic of care captures the moral situation of live kidney donations in a more coherent and comprehensive way, and offers guidance for practitioners that is more attentive to the actual moral transactions among donors and (...) recipients. A final section offers guidelines for the practice of live kidney transplants that emerge from an ethic of care. (shrink)

This study articulates the relationship between conceptualisations of time and the accounts of good care in an acute setting. Neoliberal healthcare services, with their focus on efficiencies, predominantly calculate quality care based on time‐on‐the‐clock workforce management planning systems. However, the ways staff conceptualise and then relate to diverse meanings of time have implications for good care and for staff morale. This phenomenological study was undertaken in acute medical–surgical wards, investigating the contextual, temporal nature of care embedded (...) in human relations. The study interviews involved 17 participants: 11 staff, 3 previous patients and 3 family members. Data were analysed iteratively to surface the phenomenality of temporality and good care. The following constituents of the data set are explored that together illustrate the relationship between the conceptualisations of time and the accounts of good care in an acute setting: patient time as a relational journey; patient time, sovereign time and time ethics and time, teamwork and flow. The findings are clinically significant because they offer a contrasting narrative about the relationship between time and care quality. The experiences of giving and receiving good care are indivisible from how temporality is experienced and the social relations within which care is embedded. Healthcare staff experience temporality differently from patients and families, a point that healthcare participants in this study appeared to comprehend and accommodate. For all parties involved in providing care or being the recipient of care, however, the capacity to be present was valued as a humanising ethic of care. Our study reinforces the importance of not creating presumptive binaries about which temporal structures are more or less humanising—there is a place for a fast‐paced tempo, which can be experienced as being in the flow of human relations with one's team and on behalf of patients. (shrink)

Donation after cardiac death (DCD) is associated with many problems, including ischemic injury, high rates of delayed allograft function, and frequent organ discard. Furthermore, many potential DCD donors fail to progress to asystole in a manner that would enable safe organ transplantation and no organs are recovered. DCD protocols are based upon the principle that the donor must be declared dead prior to organ recovery. A new protocol is proposed whereby after a donor family agrees to withdrawal of life-sustaining treatments, (...) premortem nephrectomy is performed in advance of end-of-life management. Since nephrectomy should not cause the donor's death, this approach satisfies the dead donor rule. The donor family's wishes are best met by organ donation, successful outcomes for the recipients, and a dignified death for the deceased. This proposal improves the likelihood of achieving these objectives. (shrink)

Deep brain stimulation (DBS) is an effective treatment for the debilitating motor symptoms of Parkinson’s disease and other neurological disorders. However, clinicians and commentators have noted that DBS recipients have not necessarily experienced the improvements in quality of life that would be expected, due in large part to what have been described as the ‘psychosocial’ impacts of DBS. The premise of this paper is that, in order to realise the full potential of DBS and similar interventions, clinical services need (...) to be arranged in such a way that these psychosocial dimensions are recognised and managed. Our starting point is that the psychosocial effects of DBS ‘in the field’ present us with analytically-useful disruptions: they disturb and foreground deeply held assumptions relating to the individual, health and its treatment, and which in a crude form manifest as the myth of technological solutionism within health care. Drawing on scholarship in medical sociology and science and technology studies (STS), we argue that DBS brings to the fore the relational dimensions of personhood, and demonstrates the emotional and social turmoil that can result if the relational dimensions of personhood are ignored by clinical services. In light of this, we argue that DBS should be implemented within a regime of care. Drawing on ethnographic research of a paediatric DBS clinical service, we provide an example of a regime of care, and conclude by reflecting on what other DBS services might learn from this paediatric service. (shrink)

This article offers a reading of Ken Loach’s 2016 film I, Daniel Blake, a fictionalised account of experiences of the UK welfare system in conditions of austerity. We consider, firstly, the significant challenge the film poses to dominant figurations of welfare recipients under austerity, through a focus on vulnerability to state processes. We follow with a reading of some of the film’s interventions in relation to reciprocity, drawing on the important trajectories of care, community and resistance that the (...) film renders visible through the collective stories of the major characters. Finally, we conclude with reflections on citizenship, subject narratives and alternative imaginaries of ‘deservingness’. Our article offers an ‘against the grain’ reading (hooks, 1996; Wearing, 2013) of the film, highlighting some of the radical possibilities of the more minor moments, character arcs and subject positionalities within the film’s central narrative of Daniel’s experiences in the shadow of the steadily crumbling welfare state. (shrink)

As this nation embarks on new efforts to reform the U.S. health system, we face a critical unfinished agenda from the mid- 1960s: persistent racial, ethnic, and socioeconomic disparities in health and health care. Medicaid, Medicare, and Community Health Centers — public programs with very different legislative histories and financing mechanisms — were the first federally funded, nationwide efforts to improve health care access for low-income and elderly Americans. Members of racial and ethnic minority groups also greatly benefited (...) from these efforts because recipients of federal funds, such as Medicare, were required to comply with the newly passed Civil Rights Act of 1964, which barred racial discrimination. Unquestionably, government played a major role in the gains in health care access that have occurred in the last half century. Yet today all Americans do not have the same opportunities for health, access to care, or quality of care when they receive it. (shrink)

Well and Good presents a combination of "classic" and little-known cases in health care ethics. These cases, accompanied by information about the major ethical theories, give students a chance to grapple with the ethical challenges faced by health care practitioners, policy makers, and recipients. The authors' narrative style and leading questions provoke student interest and engagement, while allowing instructors the freedom to draw from the theoretical perspectives they consider most useful. This fourth edition includes an expanded discussion (...) of feminist ethics, and new cases addressing pandemic ethics, humanitarian aid, the social determinants of health, research and aboriginal communities, and a number of other emerging issues. (shrink)