Healthcare is permeated by phenomena of vulnerability and their ethical significance. Nonetheless, application of this concept in healthcare ethics today is largely confined to clinical research. Approaches that further elaborate the concept in order to make it suitable for healthcare as a whole thus deserve renewed attention. Conceptual analysis. Taking up the task to make the concept of vulnerability suitable for healthcare ethics as a whole involves two challenges. Firstly, starting from the concept as it used in research ethics, a (...) more detailed characterization and systematization of the different realms of human abilities and the various ways in which these realms contain vulnerability is to be established. Secondly, at the same time, the sought-after concept of vulnerability should avoid picturing the relation between healthcare recipient and provider as a relation between a dependent individual in need and another individual capable of providing all the help necessary. An adequate concept of vulnerability should enable one to understand when and in which respects care providers may be vulnerable as well. Philosophical accounts of vulnerability can help to meet both of these challenges. Philosophical accounts of vulnerability can help to make the concept of vulnerability suitable for healthcare ethics as a whole. They come with a price, though. While the ethical role of vulnerability in medical ethics usually is to signify states of affairs that are to be diminished or overcome, philosophical accounts introduce forms of vulnerability that are regarded as valuable. Further analyzing and systematizing forms and degrees of vulnerability thus comprises the task to distinguish between amounts and types of vulnerability that can count as valuable, and amounts and types of vulnerability that are to be alleviated. (shrink)

Despite enthusiasm for patient-centered care, the practice of patient-centered care is proving challenging. Further, it is curious that the literature about this subject does not explicitly address patient autonomy, since patients guide care in patient-centered care, and respect for patient autonomy is a prominent health-care value. We argue that by explicitly adopting a relational conception of autonomy as an essential component, patient-centered care becomes more coherent, is strengthened, and could help practitioners to make better use of a principle of respect (...) for autonomy. Hence, its use appears promising to narrow the theory–practice gap. (shrink)

This book approaches ethical and legal issues in medicine from the patient's viewpoint and argues that many patients do not want the full burden of decision making that contemporary bioethics has thrust upon them.

John Christman has argued that constitutively relational accounts of autonomy, as defended by some feminist theorists, are problematically perfectionist about the human good. I argue that autonomy is constitutively relational, but not in a way that implies perfectionism: autonomy depends on a dialogical disposition to hold oneself answerable to external, critical perspectives on one's action-guiding commitments. This type of relationality carries no substantive value commitments, yet it does answer to core feminist concerns about autonomy.

This collection of new essays examines philosophical issues at the intersection of feminism and autonomy studies. Are autonomy and independence useful goals for women and subordinate persons? Is autonomy possible in contexts of social subordination? Is the pursuit of desires that issue from patriarchal norms consistent with autonomous agency? How do emotions and caring relate to autonomous deliberation? Contributors to this collection answer these questions and others, advancing central debates in autonomy theory by examining basic components, normative commitments, and applications (...) of conceptions of autonomy. Several chapters look at the conditions necessary for autonomous agency and at the role that values and norms -- such as independence, equality, inclusivity, self-respect, care and femininity -- play in feminist theories of autonomy. Whereas some contributing authors focus on dimensions of autonomy that are internal to the mind -- such as deliberative reflection, desires, cares, emotions, self-identities and feelings of self-worth -- several authors address social conditions and practices that support or stifle autonomous agency, often answering questions of practical import. These include such questions as: What type of gender socialization best supports autonomous agency and feminist goals? When does adapting to severely oppressive circumstances, such as those in human trafficking, turn into a loss of autonomy? How are ideals of autonomy affected by capitalism? and How do conceptions of autonomy inform issues in bioethics, such as end-of-life decisions, or rights to bodily self-determination? (shrink)

The second edition of this classic text substantially revises and extends the original, so as to take account of theoretical and policy developments and to enhance its international scope. Drawing on a range of disciplines and literatures, the book provides an unusually broad account of citizenship. It recasts traditional thinking about the concept so as to pinpoint important theoretical issues and their political and policy implications for women in their diversity. Themes of inclusion and exclusion (at national and international level), (...) rights and participation, inequality and difference are thus all brought to the fore in the development of a woman friendly, gender inclusive theory and praxis of citizenship. (shrink)

The current debate on euthanasia in the Lowlands is a perfect examplification of the predominance of the principle of respect for autonomy in present-day medical-ethical decisionmaking. The aim of this article is the exploration of the more fundamental philosophical issues concerning the current status of autonomy in medical ethics. The starting point for this exploration is an analysis of the principle of respect for autonomy. The authors argue that the view on autonomy in contemporary bioethical discussions is more related to (...) the Millian understanding of autonomy rather than to Kant’s conception of respect for autonomy. The uncompromising veneration of personal autonomy and the subsequent view on the human self as unencumbered is placed under critique because this portrayal of the human person is rather unreal especially in medical-ethical decisionmaking where the fragility of human life is at stake. Furthermore, extending the claims of autonomy risks to undermine the public sphere. The defence of the principle of autonomy is taken on by the quality-of-life ethic that values human life because of its qualities. Being capable of making autonomous decisions is one of this main qualities. By this, the quality-of-life approach runs counter to an idea that is deeply ingrained in medicine, viz. the sanctity of human life that holds both the inviolability and the equal value of human life. These two approaches can, however, be integrated in Christian ethics by adopting a view on quality-of-life judgements in which the proportionality of benefits and burdens has a pivotal function. To conclude this article, the authors argue for a non-absolutist account of autonomy based on two modes of decentrement of the human self: the fundamental passivity at the core of the human person and the intersubjectivity of the human existence. (shrink)

Health-care professionals in end-of-life care are frequently confronted with patients who seem to be ‘ambivalent’ about treatment decisions, especially if they express a wish to die. This article investigates this phenomenon by analysing two case stories based on narrative interviews with two patients and their caregivers. First, we argue that a respectful approach to patients requires acknowledging that coexistence of opposing wishes can be part of authentic, multi-layered experiences and moral understandings at the end of life. Second, caregivers need to (...) understand when contradictory statements point to tensions in a patient’s moral experience that require support. Third, caregivers should be careful not to negatively label or even pathologize seemingly contradictory patient statements. (shrink)

Respect for autonomy is typically considered a key reason for allowing physician assisted suicide and euthanasia. However, several recent papers have claimed this to be grounded in a misconception of the normative relevance of autonomy. It has been argued that autonomy is properly conceived of as a value, and that this makes assisted suicide as well as euthanasia wrong, since they destroy the autonomy of the patient. This paper evaluates this line of reasoning by investigating the conception of valuable autonomy. (...) Starting off from the current debate in end-of-life care, two different interpretations of how autonomy is valuable is discussed. According to one interpretation, autonomy is a personal prudential value, which may provide a reason why euthanasia and assisted suicide might be against a patient’s best interests. According to a second interpretation, inspired by Kantian ethics, being autonomous is unconditionally valuable, which may imply a duty to preserve autonomy. We argue that both lines of reasoning have limitations when it comes to situations relevant for end-of life care. It is concluded that neither way of reasoning can be used to show that assisted suicide or euthanasia always is impermissible. (shrink)

A contrast is often drawn between standard adult capacities for autonomy, which allow informed consent to be given or withheld, and patients' reduced capacities, which demand paternalistic treatment. But patients may not be radically different from the rest of us, in that all human capacities for autonomous action are limited. An adequate account of paternalism and the role that consent and respect for persons can play in medical and other practice has to be developed within an ethical theory that does (...) not impose an idealised picture of unlimited autonomy but allows for the variable and partial character of actual human autonomy. (shrink)

This collection of original essays explores the social and relational dimensions of individual autonomy. Rejecting the feminist charge that autonomy is inherently masculinist, the contributors draw on feminist critiques of autonomy to challenge and enrich contemporary philosophical debates about agency, identity, and moral responsibility. The essays analyze the complex ways in which oppression can impair an agent's capacity for autonomy, and investigate connections, neglected by standard accounts, between autonomy and other aspects of the agent, including self-conception, self-worth, memory, and the (...) imagination. (shrink)

BackgroundHealthcare is permeated by phenomena of vulnerability and their ethical significance. Nonetheless, application of this concept in healthcare ethics today is largely confined to clinical research. Approaches that further elaborate the concept in order to make it suitable for healthcare as a whole thus deserve renewed attention.MethodsConceptual analysis.ResultsTaking up the task to make the concept of vulnerability suitable for healthcare ethics as a whole involves two challenges. Firstly, starting from the concept as it used in research ethics, a more detailed (...) characterization and systematization of the different realms of human abilities and the various ways in which these realms contain vulnerability is to be established. Secondly, at the same time, the sought-after concept of vulnerability should avoid picturing the relation between healthcare recipient and provider as a relation between a dependent individual in need and another individual capable of providing all the help necessary. An adequate concept of vulnerability should enable one to understand when and in which respects care providers may be vulnerable as well. Philosophical accounts of vulnerability can help to meet both of these challenges.ConclusionsPhilosophical accounts of vulnerability can help to make the concept of vulnerability suitable for healthcare ethics as a whole. They come with a price, though. While the ethical role of vulnerability in medical ethics usually is to signify states of affairs that are to be diminished or overcome, philosophical accounts introduce forms of vulnerability that are regarded as valuable. Further analyzing and systematizing forms and degrees of vulnerability thus comprises the task to distinguish between amounts and types of vulnerability that can count as valuable, and amounts and types of vulnerability that are to be alleviated. (shrink)

The concept of autonomy plays a central role in bioethics,1 but there is no consensus as to how we should understand it beyond a general notion of self-determination. The conception of autonomy deployed in applied ethics2 can have crucial ramifications when it is applied in real-world scenarios, so it is important to be clear. However, this clarity is often lacking when autonomy is discussed in the bioethics literature. In this paper we outline three different conceptions of autonomy, and argue that (...) a substantive, perfectionist approach meets the theoretical requirements for an account of autonomy and also provides practical guidance. As Rebecca Walker argues, bioethics requires a more conceptually adequate account... (shrink)

In this article we attempt to situate nursing within the interprofessional care team with respect to processes of ethical practice and ethical decision making. After briefly reviewing the concept of interprofessionalism, the idea of a nursing ethic as ‘unique’ within the context of an interprofessional team will be explored. We suggest that nursing’s distinct perspective on the moral matters of health care stem not from any privileged vantage point but rather from knowledge developed through the daily activities of nursing practice. (...) Because of their position vis-à-vis patients and families in everyday clinical care, nurses cultivate ethical knowledge of at least two forms: (1) relational knowledge; and (2) embodied knowledge. Through the integration of these forms of knowledge, nurses develop a unique moral perspective and can make a meaningful contribution to the realm of ethics in interprofessional care. (shrink)

Should the authority to make treatment decisions be extended to the competent patient's family? Neither arguments from fairness nor communitarian concerns justify such an infringement on patient autonomy.

The received view in medical contexts is that informed consent is both necessary and sufficient for patient autonomy. This paper argues that informed consent is not sufficient for patient autonomy, at least when autonomy is understood as a "relational" concept. Relational conceptions of autonomy, which have become prominent in the contemporary literature, draw on themes in the thought of Charles Taylor. I first identify four themes in Taylor's work that together constitute a picture of human agency corresponding to the notion (...) of agency implicit in relational accounts of autonomy. Drawing on these themes, I sketch two arguments against the position that informed consent secures autonomy. The first is that informed consent is an "opportunity" concept whereas autonomy is an "exercise" concept; the second is that informed consent requires merely weak evaluation and not strong evaluation. On Taylor's analysis of agency, strong evaluation is required for agency and for autonomy. (shrink)

Whether the law should permit voluntary euthanasia or physician-assisted suicide is one of the most vital questions facing all modern societies. Internationally, the main obstacle to legalisation has proved to be the objection that, even if they were morally acceptable in certain 'hard cases', voluntary euthanasia and physician-assisted suicide could not be effectively controlled; society would slide down a 'slippery slope' to the killing of patients who did not make a free and informed request, or for whom palliative care would (...) have offered an alternative. How cogent is this objection? This book provides the general reader with a lucid introduction to this central question in the debate, not least by reviewing the Dutch euthanasia experience. It will interest all in any country whether currently for or against legalisation, who wish to ensure that their opinions are better informed. (shrink)

Principle-based formulations of bioethical theory have recently come under increasing scrutiny, particularly insofar as they give prominence to personal autonomy. This essay critiques the dominant conceptualization of autonomy and urges an alternative formulation freed from the individualistic assumptions that pervade the prevailing framework. Drawing on feminist perspectives, I discuss the need for a vision of patient autonomy that joins relational experiences to individuality and acknowledges the influence of patterns of power and authority on the exercise of patient agency. Deficiencies in (...) the current models of science and social relations guiding medical practice are analyzed, particularly (1) the tendency to disregard the patients self-knowledge and (2) failure to recognize limitations on the generalizability of medical knowledge. Models of social relations such as mothering and friendship are explored to advance a conception of autonomy better suited to the practical activities of medicine. In conclusion, I consider how acknowledgement of the specificity and complexity of social relations can contribute to reconfiguration of other principles comprising the standard framework of bioethics, particularly beneficence, justice, and equality. (shrink)

Nurses may, and often do, experience moral distress in their careers. This is related to the complicated work environment and the complex nature of ethical situations in everyday nursing practice. The outcomes of moral distress may include psychological and physical symptoms, reduced job satisfaction and even inadequate or inappropriate nursing care. Moral distress can also impact retention of nurses. Although research has grown considerably over the past few decades, there is still a great deal about this topic that we do (...) not know including how to deal well with moral distress. A critical key step is to develop a deeper understanding of relational practice as it pertains to moral distress. In this article, exploration of the experience of moral distress among nurses is guided by the key elements of relational ethics. This ethical approach was chosen because it recognizes that ethical practice is situated in relationships and it acknowledges the importance of the broader environment on influencing ethical action. The findings from this theoretical exploration will provide a theoretical foundation upon which to advance our knowledge about moral distress. (shrink)

In the Netherlands, in 2002, euthanasia became a legitimate medical act, only allowed when the due care criteria and procedural requirements are met. Legally, an Advanced Euthanasia Directive can replace direct communication if a patient can no longer express his own wishes. In the past decade, an exponential number of persons with dementia share a euthanasia request with their physician. The impact this on physicians, and the consequent support needs, remained unknown. Our objective was to gain more insight into the (...) experiences and needs of Dutch general practitioners and elderly care physicians when handling a euthanasia request from a person with dementia. We performed a qualitative interview study. Participants were recruited via purposive sampling. The interviews were transcribed verbatim, and analyzed using the conventional thematic content analysis. Eleven general practitioners and elderly care physicians with a variety of experience and different attitudes towards euthanasia for PWD were included. Euthanasia requests appeared to have a major impact on physicians. Difficulties they experienced were related to timing, workload, pressure from and expectations of relatives, society’s negative view of dementia in combination with the ‘right to die’ view, the interpretation of the law and AEDs, ethical considerations, and communication with PWD and relatives. To deal with these difficulties, participants need support from colleagues and other professionals. Although elderly care physicians appreciated moral deliberation and support by chaplains, this was hardly mentioned by GPs. Euthanasia requests in dementia seem to place an ethically and emotionally heavy burden on Dutch GPs and elderly care physicians. The awareness of, and access to, existing and new support mechanisms needs further exploration. (shrink)

History's judgment on the success of bioethics will not depend solely on the conceptual creativity and innovation in the field at the level of ethical and political theory, but this intellectual work is not insignificant. One important new development is what I shall refer to as the relational turn in bioethics. This development represents a renewed emphasis on the ideographic approach, which interprets the meaning of right and wrong in human actions as they are inscribed in social and cultural practices (...) and in structures of lived meaning and interdependence; in an ideographic approach, the task of bioethics is to bring practice into theory, not the other way around. The relational turn in bioethics may profoundly affect the critical questions that the field asks and the ethical guidance it offers society, politics, and policy. The relational turn provides a way of correcting the excessive atomism of many individualistic perspectives that have been, and continue to be, influential in bioethics. Nonetheless, I would argue that most of the work reflecting the relational turn remains distinctively liberal in its respect for the ethical significance of the human individual. It moves away from individualism, but not from the value of individuality.In this review essay, I shall focus on how the relational turn has manifested itself in work on core concepts in bioethics, especially liberty and autonomy. Following a general review, I conclude with a brief consideration of two important recent books in this area: Jennifer Nedelsky's Law's Relations and Rachel Haliburton's Autonomy and the Situated Self. (shrink)

Personal autonomy is often taken to consist in self-government or self-determination. Personal autonomy thus seems to require self-control. However, there is reason to think that autonomy is compatible with the absence of self-control. Akratic action, i.e., action performed against the agent’s better judgement, can be free. And it is also plausible to think that free actions require autonomy. It is only when you determine what you do yourself that you act freely. It follows that akratic actions can be autonomous. At (...) least in some cases, it is the agent herself, and not some alien part of her, who determines her akratic actions. But akratic actions are usually thought to be paradigm cases of self-control failure. Thus, we have reason both to conclude that autonomy requires self-control and that autonomy is compatible with the absence of self-control. My aim is to discuss the main solutions to this paradox. (shrink)

In this article I wish to show how care ethics puts forward a fundamental critique on the ideal of independency in human life without thereby discounting autonomy as a moral value altogether. In care ethics, a relational account of autonomy is developed instead. Because care ethics is sometimes criticized in the literature as hopelessly vague and ambiguous, I shall begin by elaborating on how care ethics and its place in ethical theory can be understood. I shall stipulate a definition of (...) care ethics as a moral perspective or orientation from which ethical theorizing can take place. This will mean that care ethics is more a stance from which we can theorize ethically, than ready-made theory in itself. In conceiving care ethics in this way, it becomes possible to make clear that, for instance, a moral concept of autonomy is not abandoned, but instead is given a particular place and interpretation. In the final part of this article I will show how ‘relational autonomy’ can be applied fruitfully in the practice of psychiatric care. (shrink)

BackgroundRespect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately (...) operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.MethodsUsing PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.ResultsFifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.ConclusionsThree main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations. (shrink)

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite (...) over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%).Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

Most recent accounts of personal autonomy acknowledge that the social environment a person lives in, and the personal relationships she entertains, have some impact on her autonomy. Two kinds of conceptualizing social conditions are traditionally distinguished in this regard: Causally relational accounts hold that certain relationships and social environments play a causal role for the development and on-going exercise of autonomy. Constitutively relational accounts, by contrast, claim that autonomy is at least partly constituted by a person’s social environment or standing. (...) The central aim of this paper is to raise the question how causally and constitutively relational approaches relate to the fact that we exercise our autonomy over time. I argue that once the temporal scope of autonomy is opened up, we need not only to think differently about the social dimension of autonomy. We also need to reconsider the very distinction between causally and constitutively relational accounts, because it is itself a synchronic (and not a diachronic) distinction. (shrink)

Most contemporary bioethicists believe that Western bioethical principles, such as the principle of autonomy, are universally binding wherever bioethics is found. According to these bioethicists, these principles may be subject to culturally‐conditioned further interpretations for their application in different nations or regions, but an ‘abstract content’ of each principle remains unchanged, which provides ‘an objective basis for moral judgment and international law’. This essay intends to demonstrate that this is not the case. Taking the principle of autonomy as an example, (...) this essay argues that there is no such shared ‘abstract content’ between the Western bioethical principle of autonomy and the East Asian bioethical principle of autonomy. Other things being equal, the Western principle of autonomy demands self‐determination, assumes a subjective conception of the good and promotes the value of individual independence, whilst the East Asian principle of autonomy requires family‐determination, presupposes an objective conception of the good and upholds the value of harmonious dependence. They differ from each other in the most general sense and basic moral requirement. (shrink)

ABSTRACT This paper critically examines the liberal model of decision making for the terminally ill and contrasts it with the familial model that can be found in some Asian cultures. The contrast between the two models shows that the liberal model is excessively patient‐centred, and misconceives and marginalises the role of the family in the decision making process. The paper argues that the familial model is correct in conceiving the last journey of one's life as a sharing process rather than (...) a process of exercising one's prior or counterfactual choice, and concludes by suggesting a policy framework for the practice of familialism that can answer the liberal challenge that familialism cannot safeguard the patient from abuse and neglect. (shrink)

Family members do not have an official position in the practice of euthanasia and physician assisted suicide in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and ethical questions. Therefore, the aim of this review is to explore how family members are involved in the Dutch practice of EAS according to empirical research, and to map out themes that could serve as a starting point (...) for further empirical and ethical inquiry. A systematic mixed studies review was performed. The databases Pubmed, Embase, PsycInfo, and Emcare were searched to identify empirical studies describing any aspect of the involvement of family members before, during and after EAS in the Netherlands from 1980 till 2018. Thematic analysis was chosen as method to synthesize the quantitative and qualitative studies. Sixty-six studies were identified. Only 14 studies had family members themselves as study participants. Four themes emerged from the thematic analysis. 1) Family-related reasons to request EAS. 2) Roles and responsibilities of family members during EAS decision-making and performance. 3) Families’ experiences and grief after EAS. 4) Family and ‘the good euthanasia death’ according to Dutch physicians. Family members seem to be active participants in EAS decision-making, which goes hand in hand with ambivalent feelings and experiences. Considerations about family members and the social context appear to be very important for patients and physicians when they request or grant a request for EAS. Although further empirical research is needed to assess the depth and generalizability of the results, this review provides a new perspective on EAS decision-making and challenges the Dutch ethical-legal framework of EAS. Euthanasia decision-making is typically framed in the patient-physician dyad, while a patient-physician-family triad seems more appropriate to describe what happens in clinical practice. This perspective raises questions about the interpretation of autonomy, the origins of suffering underlying requests for EAS, and the responsibilities of physicians during EAS decision-making. (shrink)

A contrast is often drawn between standard adult capacities for autonomy, which allow informed consent to be given or withheld, and patients' reduced capacities, which demand paternalistic treatment. But patients may not be radically different from the rest of us, in that all human capacities for autonomous action are limited. An adequate account of paternalism and the role that consent and respect for persons can play in medical and other practice has to be developed within an ethical theory that does (...) not impose an idealised picture of unlimited autonomy but allows for the variable and partial character of actual human autonomy. (shrink)

This article is based on the findings of a study that elicited the views of terminally ill patients, their carers and bereaved carers on the palliative care services they received. It explores the range of ethical issues revealed by the data. Although the focus of the original study was on community services, the participants frequently commented on all aspects of their experience. They described some of its positive and negative aspects. Of concern was the reported lack of sensitivity to the (...) role of the family among health professionals. The family, as carers, service users and advocates, represent a challenge to professional boundaries and the ethical norms of confidentiality and best interest. The accounts reveal the complexity of the ethical issues that characterize terminal care, issuing specific ethical challenges to nurses and other health professionals involved in this field. (shrink)

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)

The realities of long‐term care call for a refurbished, concrete concept of autonomy that systematically attends to the history and development of persons and takes account of the experiences of daily living.